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Thx Jan

I try to not let it occupy our lives but it is there, every day, reminding us of

our limitations.

My husband is currently on a 12 hr home infusion of deferoxamine(remove excess

iron) which I have to administer every other day.  This is his sixth treatment

and every day we encounter new issues, an infection on one of the injection

sites. confusion, vision problems,vomiting, sleeps constanly, can't eat (tho his

stomach is growling) etc, etc....One day he took medication and didn't know what

he took, he came into the room with white powder residue on his mouth, I had to

induce vomiting.  I am awaiting a call back from Dr's office,we are not going to

continue on ths course of treatment, he is worst instead of better.  When he

doesn't take the treatment he is back to normal eating, coherent, playing with

dog, normal BP etc..

He flooded bathroom yesterday, as he didn't know how to turn off faucet. Trying

times, the mind is scrambled, unable to turn off this madness. 

Phyllis

 

________________________________

To: livercirrhosissupport

Sent: Monday, September 14, 2009 11:40:31 AM

Subject: Re: (unknown)

Phylllis - I know you asked the question of Diane, but I feel much the same

way. Of course, I never forget that I have it, but it isn't the topmost

thing on my mind. Some of the side effects are on my mind every day, the

lack of energy, having to ration it to do what I want to do including

reading all these emails and the emails from other sources. But, I think

it is the acceptance of my medical problems, finding new ways of doing

things that don't require so much energy, spacing activities, staying as

active as possible. And my faith makes it so much easier to not become

cirrhosis, cad, pad, kidney disease, peripheral neuropathy, hypothyroid

disease, I haven't even bothered to find out what effects hasimotos disease

has on me. I am not my medical problems. I am a child of God with a job to

do here on earth. The most troublesome problem on a daily basis, and

comparitively rather minor, is osteo arthritis. It keeps reminding you with

pain. But when you know God is with you, that is so much more important

than how you might leave this world, or what will happen to you while you

are here. Now when I had an abcessed tooth that really flared up after my

last angioplasty, hurt from the top of my head down the side of my neck,

that was hard to keep out of my mind,[?] but I still continued to do as much

as possible. Jan H

On Mon, Sep 14, 2009 at 11:53 AM, Phyllis Delgado <pdelgado354@ yahoo.com>wrote:

> wow, you don't let cirrhosis occupy your mind much? Tell me how to

> accomplish that?

>

>

>

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 10:10:30 PM

> Subject: Re: (unknown)

>

>

> Yes, Dave, Hospice care is for the end-of-life and is something you

> shouldn't consider until you have made your decision regarding

> transplant. Give it much thought and consideration, both for yourself and

> your grandson.

>

> None of us knows the number of our days. We walk about every day living

> like we think we will live forever; but the truth is that any of us could go

> within the next minute. I don't allow the thought that I have cirrhosis to

> occupy too much of my time. I live my life and try my best to take care of

> myself. When my time comes, it comes; end of story. I'm not a fatalist,

> just a realist.

>

> I am always here if you need a friend or an ear to listen. I can't hide my

> faith, but I won't shove it down your throat either. Good luck with the

> call to your doctor tomorrow!

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 6:57:15 PM

> Subject: Re: (unknown)

>

>

> Diane, thanks for the moral support, and for praying for me. I guess you

> could say, Lord knows I need it. What you were saying about my grandson is

> very true. His Grandmother, my X, is very sick also. He could easily lose

> out on knowing either of us well. He just turned two. My circumstances are

> so much better than some that it annoys me I get on so much self-pity. I

> could, when time comes, look into hospice. I think hospice is for the last

> 6 months. I may be wrong, though. I don't know how far away I am from

> needing a transplant yet. Several doc's gave me 5 yrs. a little less than 4

> yrs. ago. My liver doc would not give me a length, saying he does nor

> forecast the future. I appreciated him for that answer, and the others for

> their honesty. As they say be careful what you ask. I kind of wish now,

> when I asked, the other's would not have told me. I am sure they were going

> by percentage's giving my symptoms. If they

> were correct I am about 16 months away. As I have often thought, since

> their prediction, very few really know how long they have or how they will

> go. Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 6:23:35 PM

> Subject: Re: (unknown)

>

>

> Dave, you have in no way offended me. To say that have faith, without

> question, is certainly far from reality. I have come to a place in my life

> where I rarely allow myself to question God; that has not always been so. I

> struggled with my faith for many, many years through some terribly difficult

> circumstances. I hope I won't offend you by saying I will pray for you and

> ask you not to give up on God. He hasn't given up on you.

>

> That being said, I do honestly care about you and about what you are going

> through. Cirrhosis is hard, just plain HARD. Every day is a journey into

> the unknown and leads us down paths we never dreamed we would have to walk.

> Uncertainly and depression are familiar friends. I do so hope your doctor

> can help you with the edema. BTW, I just wanted to add that you should give

> serious consideration to that transplant. Whether you do it or not, give it

> every chance when deciding. You have a beautiful grandson who would so

> desperately miss his Grandpa, and I'd be willing to bet your daughter would

> sure miss you too! Sometimes, bad things happen to good people so they can

> reacess their lives and make fresh starts.

>

> I'm praying for you Dave!

>

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 6:13:15 PM

> Subject: Re: (unknown)

>

>

> Diane, this is one of my biggest problems. I do not have a strong belief

> in the here after, religion, etc. I do not want to offend those that do. I

> wish I did, but I don't. I see how much it helps people, but I have not

> been able to grasp the concept. I come from a family that both parents were

> strong believers and they took me to church regularly. I don't know why I

> have had such a hard time with faith. I am not of the belief that the world

> happened in a vacuum. There is a degree of spirituality in me. I'm sure

> you don't want me to go into the usual talk of why bad things happen to good

> people and good things happen to bad people. I just am unable to square the

> suffering people endure with the idea of God having his hand on the

> throttle, so to speak. I hope I have not offended you or anyone. I admire

> your ability to believe without question. I know there is a force of good

> in the universe, and certainly a evil in the

> universe. I know it would help me if I had your faith, but it avoids me or

> I avoid it. Whichever way it is, the outcome for me is the same, lack of

> faith for which I, in the end, pay the price.

> Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 5:28:49 PM

> Subject: Re: (unknown)

>

>

> Hi Dave,

>

> No, Terry opted not to try for a transplant. He had been at death's door a

> couple of times prior to even knowing about his liver disease. He felt much

> more peaceful about death than dealing with life after a transplant. Also,

> he had a genetic disorder that predisposed him to liver disease. He thought

> it would be selfish of him to ask for a donor liver, knowing his body would

> begin attacking it as soon as it was transplanted, when so few are

> available. It was so hard to sit by and watch him make that decision, but I

> had watched Momma die of renal failure and had seen all she had gone through

> with the dialysis and didn't want to emotionally force anything on Terry

> that he wasn't ready to deal with. I told him I would support him fully in

> whatever decision he made; if he chose to go for the transplant, I would be

> there every step of the way but if not, I would also help him live his life

> to the fullest until the time came for him to go home

> with the Lord. As hard as it was to give him up, I did so knowing I had

> done for him what his heart desired and loved him completely until Jesus

> came for him.

>

> Now that I have cirrhosis as well, I am much in the same boat as

> you. Terry and I had three children who never made it to this world. I

> have two sisters and a niece and four nephews who love me dearly. However,

> I am not comfortable asking them to take on the role of my caregiver as this

> disease progresses. I know how hard that is on the loved one and I don't

> want them to have to go through that. I have already started checking in to

> in-patient hospice care for when that time comes. Whether I will consider a

> transplant or not is something I haven't really even thought about yet. I

> pray about it and just ask the Lord to help me make the right decision when

> the time comes.

>

> Whatever decision you make, please know that I am praying for you. I do

> not look forward to dealing with this disease, but I also don't allow myself

> to worry about it. I simply leave it with the Lord and know He already has

> a plan and all I have to do is submit myself to His will and plan for my

> life. My faith carries me through this, just as it has through so many

> other areas of my life.

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 5:05:45 PM

> Subject: Re: (unknown)

>

>

> Thanks for writing back Diane..And I am sorry you had to go through this

> with your husband...I know from dealing with close friends and family how

> difficult a progressive fatal disease is on the caregiver and others

> close..if I may ask, did your husband have a transplant? I am wrestling

> with that decision when it comes, and whether to put myself and family

> through that. I don't really have someone I can move in with during the

> recovery process, and would not put that burden on my daughter and her

> significant other. For one there is not room in her house, except a

> finished basement, and I don't see how someone could negotiate the stairs in

> that condition. For another reason her relationship is fragile I believe,

> and that would certainly not help, and though we are civil, we really don't

> care a lot for each other. I know some go into medical centers to

> recuperate and I'm fine with that option, since likely the progression

> either way will put

> me into one, but I still have a lot of soul searching to do about a

> transplant. Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 4:42:49 PM

> Subject: Re: (unknown)

>

>

> Dave, I am so sorry. Dealing with this disease wears so quickly on your

> nerves and makes you so sad, so often. Please know I am praying for you.

> Do make that call to your doctor tomorrow morning, especially since this is

> your first experience with the swelling in your extremities. Terry, my late

> husband, used to swell so badly in his feet that he couldn't walk because

> his feet would actually be rounded on the bottom and wouldn't flaten out,

> even when he was fully weight-bearing. I cannot say I know what you are

> going through from my personal experience, but I do know from having been

> with Terry as he went through it. It is agonizing for you and for those who

> love you. Again, I am so sorry that this has infringed upon your weekend

> with your daughter and grandson. Please update us after you speak with your

> doctor. My prayers are with you.

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 11:59:08 AM

> Subject: (unknown)

>

>

> I'm sorry I only seem to come here when things are bad, but seems they are

> mostly that way now...what has always been a great weekend when my daughter

> and grandson come up was full of agony for most of my visit...my legs, feet,

> and ankles swelled up so bad I could hardly walk, and my feet hurt very

> bad...finally this noon the swelling has mostly gone down..but I wonder for

> how long? I should call my doc tomorrow, but I get weary of doc's...this is

> a first in my journey of my feet and ankles swelling like this...I thought

> the ascites was bad, but that is more horrific..walking is terrible and just

> laying with my feet up to try and make the pain go away...and knowing things

> will, only progress into being worse...

> Dave

>

>

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Yes, thanks to the very generous lady who owned the company, I was able to get

it.  She was such a precious blessing to me when I went to order the monument. 

Without her generosity, I couldn't have gotten it.  Her daughter and I are very

close friends and Debbie's husband had passed away about a month prior to

Terry.  So, her Mom was very generous with me.  I will never forget her for that

and for so many other times in my life when she has been so precious to me.

Terry and I met when I was 15 1/2 and got married when I was 17 1/2; we

were married for 33+ years and were together for 2 years before that.  I grew up

with him; he was and always will be the love of my life. I'm not saying I will

never love again, but I will never love anyone else the way I loved him.  At

this point in my life, I cannot even imagine trying to go out with someone else;

I would feel like I were cheating on Terry. A couple of guys have asked to call

me, but I have refused; it's just too soon and I'm really not sure it will ever

be the right thing for me.

 

Warm Hugs...........

 

Di

http://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

Sent: Monday, September 14, 2009 1:55:22 PM

Subject: Re: (unknown)

 

were you able to afford it? You sure had a special love for one another, it

shows in your writings, your memories. 

____________ _________ _________ __

From: diane chandler <dianechandler@ att.net>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 10:16:19 PM

Subject: Re: (unknown)

 

Terry's doctors were much the same with regards to predictions.  Terry always

knew more about himself than any of the doctors.  And, I have to say, so did

I.  My problem was accepting what I knew in my heart to be true.  I wanted so

much for it not to be true.  However, there was no denying it once I felt that

presence of death in our house about 4-6 weeks before Terry went home.  I knew,

he knew and we just loved each other harder and tried to squeeze every joy out

of every minute for as long as we had.  On his last visit to the hospital, as I

was driving him home he asked me to drive by the monument place where we had

seen some monuments we liked.  I drove by and he pointed out the one he wanted. 

He said very specifically " Di, it won't be long and that's the one I want if we

can afford that " .  About two weeks later, he was with Jesus.

 

Warm Hugs........ ...

 

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: Jill <jillkstewart@ yahoo.com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 7:04:33 PM

Subject: Re: (unknown)

 

My husband,Ed's, hepatologist will not really give us a time lkimit either. He

said Ed may continue like he is for 6 yearsor 6 months or 6 days. He says he

can't really predict it...but we will see some signs. Ed said during this last

hospital stay that he doesn't think he will live much more than 2 years....but

that's his personal opinion., Today Ed said he sure wishes someone would give

him a timeline on cirrohisis. . Wouldn't that be wonderful ! Then we could plan

and get things in order...and know how far ahead to dream about things! But as

it is......we take each day as it comes, cherish the Lord's blessings and try to

make each and every day a good one. That's all we can do.

                                       

                                    Love,Jill

 

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

From: dave dodds <daveliltoe@ yahoo. com>

Subject: Re: (unknown)

To: livercirrhosissuppo rtyahoogroups (DOT) com

Date: Sunday, September 13, 2009, 7:57 PM

 

Diane, thanks for the moral support, and for praying for me.  I guess you could

say, Lord knows I need it.  What you were saying about my grandson is very

true.  His Grandmother, my X, is very sick also.  He could easily lose out on

knowing either of us well.  He just turned two.  My circumstances are so much

better than some that it annoys me I get on so much self-pity.  I could, when

time comes, look into hospice.  I think hospice is for the last 6 months.  I may

be wrong, though.  I don't know how far away I am from needing a transplant

yet.  Several doc's gave me 5 yrs. a little less than 4 yrs. ago.  My liver doc

would not give me a length, saying he does nor forecast the future.  I

appreciated him for that answer, and the others for their honesty.  As they say

be careful what you ask.  I kind of wish now, when I asked, the other's would

not have told me.  I am sure they were going by percentage's giving my

symptoms.  If they

were correct I am about 16 months away.  As I have often thought, since their

prediction, very few really know how long they have or how they will go.   Dave

____________ _________ _________ __

From: diane chandler <dianechandler@ att.net>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 6:23:35 PM

Subject: Re: (unknown)

 

Dave, you have in no way offended me.  To say that have faith, without

question, is certainly far from reality.  I have come to a place in my life

where I rarely allow myself to question God; that has not always been so..  I

struggled with my faith for many, many years through some terribly difficult

circumstances.  I hope I won't offend you by saying I will pray for you and ask

you not to give up on God.  He hasn't given up on you. 

That being said, I do honestly care about you and about what you are going

through.  Cirrhosis is hard, just plain HARD.  Every day is a journey into the

unknown and leads us down paths we never dreamed we would have to walk. 

Uncertainly and depression are familiar friends.  I do so hope your doctor can

help you with the edema.  BTW, I just wanted to add that you should give serious

consideration to that transplant.  Whether you do it or not, give it every

chance when deciding.  You have a beautiful grandson who would so desperately

miss his Grandpa, and I'd be willing to bet your daughter would sure miss you

too!  Sometimes, bad things happen to good people so they can reacess their

lives and make fresh starts. 

I'm praying for you Dave!

 

Warm Hugs........ ...

 

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: dave dodds <daveliltoe@ yahoo. com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 6:13:15 PM

Subject: Re: (unknown)

 

Diane, this is one of my biggest problems.  I do not have a strong belief in the

here after, religion, etc.  I do not want to offend those that do.  I wish I

did, but I don't.  I see how much it helps people, but I have not been able to

grasp the concept.  I come from a family that both parents were strong believers

and they took me to church regularly.  I don't know why I have had such a hard

time with faith.  I am not of the belief that the world happened in a vacuum. 

There is a degree of spirituality in me.  I'm sure you don't want me to go into

the usual talk of why bad things happen to good people and good things happen to

bad people..  I just am unable to square the suffering people endure with the

idea of God having his hand on the throttle, so to speak.  I hope I have not

offended you or anyone.  I admire your ability to believe without question.  I

know there is a force of good in the universe, and certainly a evil in the

universe.  I know it would help me if I had your faith, but it avoids me or I

avoid it.  Whichever way it is, the outcome for me is the same, lack of faith

for which I, in the end, pay the price.     

 Dave

____________ _________ _________ __

From: diane chandler <dianechandler@ att.net>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 5:28:49 PM

Subject: Re: (unknown)

 

Hi Dave,

No, Terry opted not to try for a transplant.  He had been at death's door a

couple of times prior to even knowing about his liver disease.  He felt much

more peaceful about death than dealing with life after a transplant.  Also, he

had a genetic disorder that predisposed him to liver disease.  He thought it

would be selfish of him to ask for a donor liver, knowing his body would begin

attacking it as soon as it was transplanted, when so few are available.  It was

so hard to sit by and watch him make that decision, but I had watched Momma die

of renal failure and had seen all she had gone through with the dialysis and

didn't want to emotionally force anything on Terry that he wasn't ready to deal

with.  I told him I would support him fully in whatever decision he made; if he

chose to go for the transplant, I would be there every step of the way but if

not, I would also help him live his life to the fullest until the time came for

him to go home

with the Lord.  As hard as it was to give him up, I did so knowing I had done

for him what his heart desired and loved him completely until Jesus came for

him.

Now that I have cirrhosis as well, I am much in the same boat as you.  Terry and

I had three children who never made it to this world.  I have two sisters and a

niece and four nephews who love me dearly.  However, I am not comfortable asking

them to take on the role of my caregiver as this disease progresses.  I know how

hard that is on the loved one and I don't want them to have to go through that. 

I have already started checking in to in-patient hospice care for when that time

comes.  Whether I will consider a transplant or not is something I haven't

really even thought about yet.  I pray about it and just ask the Lord to help me

make the right decision when the time comes.

Whatever decision you make, please know that I am praying for you.  I do not

look forward to dealing with this disease, but I also don't allow myself to

worry about it.  I simply leave it with the Lord and know He already has a plan

and all I have to do is submit myself to His will and plan for my life.  My

faith carries me through this, just as it has through so many other areas of my

life.

 

Warm Hugs........ ...

 

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: dave dodds <daveliltoe@ yahoo. com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 5:05:45 PM

Subject: Re: (unknown)

 

Thanks for writing back Diane..And I am sorry you had to go through this with

your husband...I know from dealing with close friends and family how difficult a

progressive fatal disease is on the caregiver and others close..if I may ask,

did your husband have a transplant?  I am wrestling with that decision when it

comes, and whether to put myself and family through that.  I don't really have

someone I can move in with during the recovery process, and would not put that

burden on my daughter and her significant other.  For one there is not room in

her house, except a finished basement, and I don't see how someone could

negotiate the stairs in that condition.  For another reason her relationship is

fragile I believe, and that would certainly not help, and though we are civil,

we really don't care a lot for each other.  I know some go into medical centers

to recuperate and I'm fine with that option, since likely the progression either

way will put

me into one, but I still have a lot of soul searching to do about a

transplant.     Dave

____________ _________ _________ __

From: diane chandler <dianechandler@ att.net>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 4:42:49 PM

Subject: Re: (unknown)

 

Dave, I am so sorry.  Dealing with this disease wears so quickly on your nerves

and makes you so sad, so often.  Please know I am praying for you.  Do make that

call to your doctor tomorrow morning, especially since this is your first

experience with the swelling in your extremities.  Terry, my late husband, used

to swell so badly in his feet that he couldn't walk because his feet would

actually be rounded on the bottom and wouldn't flaten out, even when he was

fully weight-bearing.  I cannot say I know what you are going through from my

personal experience, but I do know from having been with Terry as he went

through it.  It is agonizing for you and for those who love you.  Again, I am so

sorry that this has infringed upon your weekend with your daughter and

grandson.  Please update us after you speak with your doctor.  My prayers are

with you.

 

Warm Hugs........ ...

 

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: dave dodds <daveliltoe@ yahoo. com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 11:59:08 AM

Subject: (unknown)

 

I'm sorry I only seem to come here when things are bad, but seems they are

mostly that way now...what has always been a great weekend when my daughter and

grandson come up was full of agony for most of my visit...my legs, feet, and

ankles swelled up so bad I could hardly walk, and my feet hurt very

bad...finally this noon the swelling has mostly gone down..but I wonder for how

long?  I should call my doc tomorrow, but I get weary of doc's...this is a first

in my journey of my feet and ankles swelling like this...I thought the ascites

was bad, but that is more horrific..walking is terrible and just laying with my

feet up to try and make the pain go away...and knowing things will, only

progress into being worse... 

 Dave

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Guest guest

I will try to follow your lead!

Thanks amiga!

________________________________

To: livercirrhosissupport

Sent: Monday, September 14, 2009 1:49:16 PM

Subject: Re: (unknown)

 

When I do think about it, I just choose to let it be a passing thought.  Maybe

that's easier for me because my cirrhosis is still in the earlier stages.  My

complications are very limited at this time, so it's not really hard work to

just put it aside.  Also, I have to say, grief takes up most of my time right

now.  It is by far the hardest thing I have ever done.  Dealing with my own

health problems is no comparison to dealing with the pain of losing Terry.  I

pray constantly just to be able to keep going every day.  Do I give in to either

of these stressors at times; absolutely.  I work very hard at only allowing

myself limited time in my day for either.  I have to deal with my grief and I

have to deal with my cirrhosis, but I don't have to give either of them my

entire life and my complete attention.  I try to fill my time with other things

so that I don't have time to think about my problems.  I know it won't work for

everyone, but it

works for me.  When I get under it, I just pray and ask the Lord to help me rise

above it.  He hasn't let me down yet!

 

Warm Hugs........ ...

 

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: Phyllis Delgado <pdelgado354@ yahoo.com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Monday, September 14, 2009 1:53:16 PM

Subject: Re: (unknown)

 

wow, you don't let cirrhosis occupy your mind much?  Tell me how to accomplish

that?

____________ _________ _________ __

From: diane chandler <dianechandler@ att.net>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 10:10:30 PM

Subject: Re: (unknown)

 

Yes, Dave, Hospice care is for the end-of-life and is something you shouldn't

consider until you have made your decision regarding transplant.  Give it much

thought and consideration, both for yourself and your grandson.

None of us knows the number of our days.  We walk about every day living like we

think we will live forever; but the truth is that any of us could go within the

next minute.  I don't allow the thought that I have cirrhosis to occupy too much

of my time.  I live my life and try my best to take care of myself.  When my

time comes, it comes; end of story.  I'm not a fatalist, just a realist.  

I am always here if you need a friend or an ear to listen.  I can't hide my

faith, but I won't shove it down your throat either.  Good luck with the call to

your doctor tomorrow!

Warm Hugs........ ...

 

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: dave dodds <daveliltoe@ yahoo. com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 6:57:15 PM

Subject: Re: (unknown)

 

Diane, thanks for the moral support, and for praying for me.  I guess you could

say, Lord knows I need it.  What you were saying about my grandson is very

true.  His Grandmother, my X, is very sick also.  He could easily lose out on

knowing either of us well.  He just turned two.  My circumstances are so much

better than some that it annoys me I get on so much self-pity.  I could, when

time comes, look into hospice.  I think hospice is for the last 6 months.  I may

be wrong, though.  I don't know how far away I am from needing a transplant

yet.  Several doc's gave me 5 yrs. a little less than 4 yrs. ago.  My liver doc

would not give me a length, saying he does nor forecast the future.  I

appreciated him for that answer, and the others for their honesty.  As they say

be careful what you ask.  I kind of wish now, when I asked, the other's would

not have told me.  I am sure they were going by percentage's giving my

symptoms.  If they

were correct I am about 16 months away.  As I have often thought, since their

prediction, very few really know how long they have or how they will go.   Dave

____________ _________ _________ __

From: diane chandler <dianechandler@ att.net>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 6:23:35 PM

Subject: Re: (unknown)

 

Dave, you have in no way offended me.  To say that have faith, without

question, is certainly far from reality.  I have come to a place in my life

where I rarely allow myself to question God; that has not always been so.  I

struggled with my faith for many, many years through some terribly difficult

circumstances.  I hope I won't offend you by saying I will pray for you and ask

you not to give up on God.  He hasn't given up on you. 

That being said, I do honestly care about you and about what you are going

through.  Cirrhosis is hard, just plain HARD.  Every day is a journey into the

unknown and leads us down paths we never dreamed we would have to walk. 

Uncertainly and depression are familiar friends.  I do so hope your doctor can

help you with the edema.  BTW, I just wanted to add that you should give serious

consideration to that transplant.  Whether you do it or not, give it every

chance when deciding.  You have a beautiful grandson who would so desperately

miss his Grandpa, and I'd be willing to bet your daughter would sure miss you

too!  Sometimes, bad things happen to good people so they can reacess their

lives and make fresh starts. 

I'm praying for you Dave!

 

Warm Hugs........ ...

 

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: dave dodds <daveliltoe@ yahoo. com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 6:13:15 PM

Subject: Re: (unknown)

 

Diane, this is one of my biggest problems.  I do not have a strong belief in the

here after, religion, etc.  I do not want to offend those that do.  I wish I

did, but I don't.  I see how much it helps people, but I have not been able to

grasp the concept.  I come from a family that both parents were strong believers

and they took me to church regularly.  I don't know why I have had such a hard

time with faith.  I am not of the belief that the world happened in a vacuum. 

There is a degree of spirituality in me.  I'm sure you don't want me to go into

the usual talk of why bad things happen to good people and good things happen to

bad people.  I just am unable to square the suffering people endure with the

idea of God having his hand on the throttle, so to speak.  I hope I have not

offended you or anyone.  I admire your ability to believe without question.  I

know there is a force of good in the universe, and certainly a evil in the

universe.  I know it would help me if I had your faith, but it avoids me or I

avoid it.  Whichever way it is, the outcome for me is the same, lack of faith

for which I, in the end, pay the price.     

 Dave

____________ _________ _________ __

From: diane chandler <dianechandler@ att.net>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 5:28:49 PM

Subject: Re: (unknown)

 

Hi Dave,

No, Terry opted not to try for a transplant.  He had been at death's door a

couple of times prior to even knowing about his liver disease.  He felt much

more peaceful about death than dealing with life after a transplant.  Also, he

had a genetic disorder that predisposed him to liver disease.  He thought it

would be selfish of him to ask for a donor liver, knowing his body would begin

attacking it as soon as it was transplanted, when so few are available.  It was

so hard to sit by and watch him make that decision, but I had watched Momma die

of renal failure and had seen all she had gone through with the dialysis and

didn't want to emotionally force anything on Terry that he wasn't ready to deal

with.  I told him I would support him fully in whatever decision he made; if he

chose to go for the transplant, I would be there every step of the way but if

not, I would also help him live his life to the fullest until the time came for

him to go home

with the Lord.  As hard as it was to give him up, I did so knowing I had done

for him what his heart desired and loved him completely until Jesus came for

him.

Now that I have cirrhosis as well, I am much in the same boat as you.  Terry and

I had three children who never made it to this world.  I have two sisters and a

niece and four nephews who love me dearly.  However, I am not comfortable asking

them to take on the role of my caregiver as this disease progresses.  I know how

hard that is on the loved one and I don't want them to have to go through that. 

I have already started checking in to in-patient hospice care for when that time

comes.  Whether I will consider a transplant or not is something I haven't

really even thought about yet.  I pray about it and just ask the Lord to help me

make the right decision when the time comes.

Whatever decision you make, please know that I am praying for you.  I do not

look forward to dealing with this disease, but I also don't allow myself to

worry about it.  I simply leave it with the Lord and know He already has a plan

and all I have to do is submit myself to His will and plan for my life.  My

faith carries me through this, just as it has through so many other areas of my

life.

 

Warm Hugs........ ...

 

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: dave dodds <daveliltoe@ yahoo. com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 5:05:45 PM

Subject: Re: (unknown)

 

Thanks for writing back Diane..And I am sorry you had to go through this with

your husband...I know from dealing with close friends and family how difficult a

progressive fatal disease is on the caregiver and others close..if I may ask,

did your husband have a transplant?  I am wrestling with that decision when it

comes, and whether to put myself and family through that.  I don't really have

someone I can move in with during the recovery process, and would not put that

burden on my daughter and her significant other.  For one there is not room in

her house, except a finished basement, and I don't see how someone could

negotiate the stairs in that condition.  For another reason her relationship is

fragile I believe, and that would certainly not help, and though we are civil,

we really don't care a lot for each other.  I know some go into medical centers

to recuperate and I'm fine with that option, since likely the progression either

way will put

me into one, but I still have a lot of soul searching to do about a

transplant.     Dave

____________ _________ _________ __

From: diane chandler <dianechandler@ att.net>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 4:42:49 PM

Subject: Re: (unknown)

 

Dave, I am so sorry.  Dealing with this disease wears so quickly on your nerves

and makes you so sad, so often.  Please know I am praying for you.  Do make that

call to your doctor tomorrow morning, especially since this is your first

experience with the swelling in your extremities.  Terry, my late husband, used

to swell so badly in his feet that he couldn't walk because his feet would

actually be rounded on the bottom and wouldn't flaten out, even when he was

fully weight-bearing.  I cannot say I know what you are going through from my

personal experience, but I do know from having been with Terry as he went

through it.  It is agonizing for you and for those who love you.  Again, I am so

sorry that this has infringed upon your weekend with your daughter and

grandson.  Please update us after you speak with your doctor.  My prayers are

with you.

 

Warm Hugs........ ...

 

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: dave dodds <daveliltoe@ yahoo. com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 11:59:08 AM

Subject: (unknown)

 

I'm sorry I only seem to come here when things are bad, but seems they are

mostly that way now...what has always been a great weekend when my daughter and

grandson come up was full of agony for most of my visit...my legs, feet, and

ankles swelled up so bad I could hardly walk, and my feet hurt very

bad...finally this noon the swelling has mostly gone down..but I wonder for how

long?  I should call my doc tomorrow, but I get weary of doc's...this is a first

in my journey of my feet and ankles swelling like this...I thought the ascites

was bad, but that is more horrific..walking is terrible and just laying with my

feet up to try and make the pain go away...and knowing things will, only

progress into being worse... 

 Dave

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Phyllis - I understand, you are having a hard time. It never stops. You do

start wondering what next. When I left the nursing home they sent me to

after my CABG a year ago last April, I jokingly said " I wonder what is

going to happen next year. Some people got mad at me for saying it as if I

could actually cause something to happen by joking about it.

I don't even count the for me routine angioplasty and stent procedures.

But it seems that every winter/spring, some major medical problem happened.

The year before it had been pancreatitis ending in gall bladder surgery.

This year at least I didn't have to go into the hospital, except for two

angioplasties. But I did find out that my kidneys were in trouble. From

what you said, for you it is a daily problem.

I couldn't do what you caretakers do, I admire you all immensely. Every

time something happens, I am sure it is a disappointment. But, can you get

to a point where you no longer expect things to be good, no problems for a

day. For me, it isn't such a shock or disappointmnet when something new

happens because I don't expect for my body to miraculously heal itself.

Although, there are a lot of people who are praying for that very thing for

me. I hope you have some help with your dad, and that you can get out and

do something other taking care of him. And if you do, don't feel guilty for

having fun when he is so ill. And, I hope you will be able to find some

times when you can have a good time with your dad, regardless of how short

it may be. Those are the times to hold on to. Jan H

On Mon, Sep 14, 2009 at 2:52 PM, Phyllis Delgado wrote:

> Thx Jan

> I try to not let it occupy our lives but it is there, every day, reminding

> us of our limitations.

> My husband is currently on a 12 hr home infusion of deferoxamine(remove

> excess iron) which I have to administer every other day. This is his sixth

> treatment and every day we encounter new issues, an infection on one of the

> injection sites. confusion, vision problems,vomiting, sleeps constanly,

> can't eat (tho his stomach is growling) etc, etc....One day he took

> medication and didn't know what he took, he came into the room with white

> powder residue on his mouth, I had to induce vomiting. I am awaiting a call

> back from Dr's office,we are not going to continue on ths course of

> treatment, he is worst instead of better. When he doesn't take the

> treatment he is back to normal eating, coherent, playing with dog, normal BP

> etc..

> He flooded bathroom yesterday, as he didn't know how to turn off faucet.

> Trying times, the mind is scrambled, unable to turn off this madness.

> Phyllis

>

>

> ________________________________

>

>

> To: livercirrhosissupport

> Sent: Monday, September 14, 2009 11:40:31 AM

> Subject: Re: (unknown)

>

> Phylllis - I know you asked the question of Diane, but I feel much the same

> way. Of course, I never forget that I have it, but it isn't the topmost

> thing on my mind. Some of the side effects are on my mind every day, the

> lack of energy, having to ration it to do what I want to do including

> reading all these emails and the emails from other sources. But, I think

> it is the acceptance of my medical problems, finding new ways of doing

> things that don't require so much energy, spacing activities, staying as

> active as possible. And my faith makes it so much easier to not become

> cirrhosis, cad, pad, kidney disease, peripheral neuropathy, hypothyroid

> disease, I haven't even bothered to find out what effects hasimotos disease

> has on me. I am not my medical problems. I am a child of God with a job to

> do here on earth. The most troublesome problem on a daily basis, and

> comparitively rather minor, is osteo arthritis. It keeps reminding you with

> pain. But when you know God is with you, that is so much more important

> than how you might leave this world, or what will happen to you while you

> are here. Now when I had an abcessed tooth that really flared up after my

> last angioplasty, hurt from the top of my head down the side of my neck,

> that was hard to keep out of my mind,[?] but I still continued to do as

> much

> as possible. Jan H

>

> On Mon, Sep 14, 2009 at 11:53 AM, Phyllis Delgado <pdelgado354@ yahoo.com

> >wrote:

>

> > wow, you don't let cirrhosis occupy your mind much? Tell me how to

> > accomplish that?

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: diane chandler <dianechandler@ att.net>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Sunday, September 13, 2009 10:10:30 PM

> > Subject: Re: (unknown)

> >

> >

> > Yes, Dave, Hospice care is for the end-of-life and is something you

> > shouldn't consider until you have made your decision regarding

> > transplant. Give it much thought and consideration, both for yourself and

> > your grandson.

> >

> > None of us knows the number of our days. We walk about every day living

> > like we think we will live forever; but the truth is that any of us could

> go

> > within the next minute. I don't allow the thought that I have cirrhosis

> to

> > occupy too much of my time. I live my life and try my best to take care

> of

> > myself. When my time comes, it comes; end of story. I'm not a fatalist,

> > just a realist.

> >

> > I am always here if you need a friend or an ear to listen. I can't hide

> my

> > faith, but I won't shove it down your throat either. Good luck with the

> > call to your doctor tomorrow!

> >

> > Warm Hugs........ ...

> >

> > Di

> > http://auntdisexper imentallife. blogspot. com/

> >

> > ____________ _________ _________ __

> > From: dave dodds <daveliltoe@ yahoo. com>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Sunday, September 13, 2009 6:57:15 PM

> > Subject: Re: (unknown)

> >

> >

> > Diane, thanks for the moral support, and for praying for me. I guess you

> > could say, Lord knows I need it. What you were saying about my grandson

> is

> > very true. His Grandmother, my X, is very sick also. He could easily lose

> > out on knowing either of us well. He just turned two. My circumstances

> are

> > so much better than some that it annoys me I get on so much self-pity. I

> > could, when time comes, look into hospice. I think hospice is for the

> last

> > 6 months. I may be wrong, though. I don't know how far away I am from

> > needing a transplant yet. Several doc's gave me 5 yrs. a little less than

> 4

> > yrs. ago. My liver doc would not give me a length, saying he does nor

> > forecast the future. I appreciated him for that answer, and the others

> for

> > their honesty. As they say be careful what you ask. I kind of wish now,

> > when I asked, the other's would not have told me. I am sure they were

> going

> > by percentage's giving my symptoms. If they

> > were correct I am about 16 months away. As I have often thought, since

> > their prediction, very few really know how long they have or how they

> will

> > go. Dave

> >

> > ____________ _________ _________ __

> > From: diane chandler <dianechandler@ att.net>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Sunday, September 13, 2009 6:23:35 PM

> > Subject: Re: (unknown)

> >

> >

> > Dave, you have in no way offended me. To say that have faith, without

> > question, is certainly far from reality. I have come to a place in my

> life

> > where I rarely allow myself to question God; that has not always been so.

> I

> > struggled with my faith for many, many years through some terribly

> difficult

> > circumstances. I hope I won't offend you by saying I will pray for you

> and

> > ask you not to give up on God. He hasn't given up on you.

> >

> > That being said, I do honestly care about you and about what you are

> going

> > through. Cirrhosis is hard, just plain HARD. Every day is a journey into

> > the unknown and leads us down paths we never dreamed we would have to

> walk.

> > Uncertainly and depression are familiar friends. I do so hope your doctor

> > can help you with the edema. BTW, I just wanted to add that you should

> give

> > serious consideration to that transplant. Whether you do it or not, give

> it

> > every chance when deciding. You have a beautiful grandson who would so

> > desperately miss his Grandpa, and I'd be willing to bet your daughter

> would

> > sure miss you too! Sometimes, bad things happen to good people so they

> can

> > reacess their lives and make fresh starts.

> >

> > I'm praying for you Dave!

> >

> >

> > Warm Hugs........ ...

> >

> > Di

> > http://auntdisexper imentallife. blogspot. com/

> >

> > ____________ _________ _________ __

> > From: dave dodds <daveliltoe@ yahoo. com>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Sunday, September 13, 2009 6:13:15 PM

> > Subject: Re: (unknown)

> >

> >

> > Diane, this is one of my biggest problems. I do not have a strong belief

> > in the here after, religion, etc. I do not want to offend those that do.

> I

> > wish I did, but I don't. I see how much it helps people, but I have not

> > been able to grasp the concept. I come from a family that both parents

> were

> > strong believers and they took me to church regularly. I don't know why I

> > have had such a hard time with faith. I am not of the belief that the

> world

> > happened in a vacuum. There is a degree of spirituality in me. I'm sure

> > you don't want me to go into the usual talk of why bad things happen to

> good

> > people and good things happen to bad people. I just am unable to square

> the

> > suffering people endure with the idea of God having his hand on the

> > throttle, so to speak. I hope I have not offended you or anyone. I admire

> > your ability to believe without question. I know there is a force of good

> > in the universe, and certainly a evil in the

> > universe. I know it would help me if I had your faith, but it avoids me

> or

> > I avoid it. Whichever way it is, the outcome for me is the same, lack of

> > faith for which I, in the end, pay the price.

> > Dave

> >

> > ____________ _________ _________ __

> > From: diane chandler <dianechandler@ att.net>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Sunday, September 13, 2009 5:28:49 PM

> > Subject: Re: (unknown)

> >

> >

> > Hi Dave,

> >

> > No, Terry opted not to try for a transplant. He had been at death's door

> a

> > couple of times prior to even knowing about his liver disease. He felt

> much

> > more peaceful about death than dealing with life after a transplant.

> Also,

> > he had a genetic disorder that predisposed him to liver disease. He

> thought

> > it would be selfish of him to ask for a donor liver, knowing his body

> would

> > begin attacking it as soon as it was transplanted, when so few are

> > available. It was so hard to sit by and watch him make that decision, but

> I

> > had watched Momma die of renal failure and had seen all she had gone

> through

> > with the dialysis and didn't want to emotionally force anything on Terry

> > that he wasn't ready to deal with. I told him I would support him fully

> in

> > whatever decision he made; if he chose to go for the transplant, I would

> be

> > there every step of the way but if not, I would also help him live his

> life

> > to the fullest until the time came for him to go home

> > with the Lord. As hard as it was to give him up, I did so knowing I had

> > done for him what his heart desired and loved him completely until Jesus

> > came for him.

> >

> > Now that I have cirrhosis as well, I am much in the same boat as

> > you. Terry and I had three children who never made it to this world. I

> > have two sisters and a niece and four nephews who love me dearly.

> However,

> > I am not comfortable asking them to take on the role of my caregiver as

> this

> > disease progresses. I know how hard that is on the loved one and I don't

> > want them to have to go through that. I have already started checking in

> to

> > in-patient hospice care for when that time comes. Whether I will consider

> a

> > transplant or not is something I haven't really even thought about yet. I

> > pray about it and just ask the Lord to help me make the right decision

> when

> > the time comes.

> >

> > Whatever decision you make, please know that I am praying for you. I do

> > not look forward to dealing with this disease, but I also don't allow

> myself

> > to worry about it. I simply leave it with the Lord and know He already

> has

> > a plan and all I have to do is submit myself to His will and plan for my

> > life. My faith carries me through this, just as it has through so many

> > other areas of my life.

> >

> > Warm Hugs........ ...

> >

> > Di

> > http://auntdisexper imentallife. blogspot. com/

> >

> > ____________ _________ _________ __

> > From: dave dodds <daveliltoe@ yahoo. com>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Sunday, September 13, 2009 5:05:45 PM

> > Subject: Re: (unknown)

> >

> >

> > Thanks for writing back Diane..And I am sorry you had to go through this

> > with your husband...I know from dealing with close friends and family how

> > difficult a progressive fatal disease is on the caregiver and others

> > close..if I may ask, did your husband have a transplant? I am wrestling

> > with that decision when it comes, and whether to put myself and family

> > through that. I don't really have someone I can move in with during the

> > recovery process, and would not put that burden on my daughter and her

> > significant other. For one there is not room in her house, except a

> > finished basement, and I don't see how someone could negotiate the stairs

> in

> > that condition. For another reason her relationship is fragile I believe,

> > and that would certainly not help, and though we are civil, we really

> don't

> > care a lot for each other. I know some go into medical centers to

> > recuperate and I'm fine with that option, since likely the progression

> > either way will put

> > me into one, but I still have a lot of soul searching to do about a

> > transplant. Dave

> >

> > ____________ _________ _________ __

> > From: diane chandler <dianechandler@ att.net>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Sunday, September 13, 2009 4:42:49 PM

> > Subject: Re: (unknown)

> >

> >

> > Dave, I am so sorry. Dealing with this disease wears so quickly on your

> > nerves and makes you so sad, so often. Please know I am praying for you.

> > Do make that call to your doctor tomorrow morning, especially since this

> is

> > your first experience with the swelling in your extremities. Terry, my

> late

> > husband, used to swell so badly in his feet that he couldn't walk because

> > his feet would actually be rounded on the bottom and wouldn't flaten out,

> > even when he was fully weight-bearing. I cannot say I know what you are

> > going through from my personal experience, but I do know from having been

> > with Terry as he went through it. It is agonizing for you and for those

> who

> > love you. Again, I am so sorry that this has infringed upon your weekend

> > with your daughter and grandson. Please update us after you speak with

> your

> > doctor. My prayers are with you.

> >

> > Warm Hugs........ ...

> >

> > Di

> > http://auntdisexper imentallife. blogspot. com/

> >

> > ____________ _________ _________ __

> > From: dave dodds <daveliltoe@ yahoo. com>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Sunday, September 13, 2009 11:59:08 AM

> > Subject: (unknown)

> >

> >

> > I'm sorry I only seem to come here when things are bad, but seems they

> are

> > mostly that way now...what has always been a great weekend when my

> daughter

> > and grandson come up was full of agony for most of my visit...my legs,

> feet,

> > and ankles swelled up so bad I could hardly walk, and my feet hurt very

> > bad...finally this noon the swelling has mostly gone down..but I wonder

> for

> > how long? I should call my doc tomorrow, but I get weary of doc's...this

> is

> > a first in my journey of my feet and ankles swelling like this...I

> thought

> > the ascites was bad, but that is more horrific..walking is terrible and

> just

> > laying with my feet up to try and make the pain go away...and knowing

> things

> > will, only progress into being worse...

> > Dave

> >

> >

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Terry never had to deal with excess iron, so never dealt with these treatments. 

I know this does put an entirely new face on dealing with the disease.  The

other things you mentioned, we did deal with on a progressively worse basis as

time went by.  We just dealt with whatever was happening at the moment and then

moved on until the next hurdle presented itself.  I am praying for you and Ed. 

I know it is hard and the days and nights are long.

 

Warm Hugs...........

 

Di

http://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

Sent: Monday, September 14, 2009 4:52:38 PM

Subject: Re: (unknown)

 

Thx Jan

I try to not let it occupy our lives but it is there, every day, reminding us of

our limitations.

My husband is currently on a 12 hr home infusion of deferoxamine( remove excess

iron) which I have to administer every other day.  This is his sixth treatment

and every day we encounter new issues, an infection on one of the injection

sites. confusion, vision problems,vomiting, sleeps constanly, can't eat (tho his

stomach is growling) etc, etc....One day he took medication and didn't know what

he took, he came into the room with white powder residue on his mouth, I had to

induce vomiting.  I am awaiting a call back from Dr's office,we are not going to

continue on ths course of treatment, he is worst instead of better.  When he

doesn't take the treatment he is back to normal eating, coherent, playing with

dog, normal BP etc..

He flooded bathroom yesterday, as he didn't know how to turn off faucet. Trying

times, the mind is scrambled, unable to turn off this madness. 

Phyllis

 

____________ _________ _________ __

From: Jan Holman <janholmangmail (DOT) com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Monday, September 14, 2009 11:40:31 AM

Subject: Re: (unknown)

Phylllis - I know you asked the question of Diane, but I feel much the same

way. Of course, I never forget that I have it, but it isn't the topmost

thing on my mind. Some of the side effects are on my mind every day, the

lack of energy, having to ration it to do what I want to do including

reading all these emails and the emails from other sources. But, I think

it is the acceptance of my medical problems, finding new ways of doing

things that don't require so much energy, spacing activities, staying as

active as possible. And my faith makes it so much easier to not become

cirrhosis, cad, pad, kidney disease, peripheral neuropathy, hypothyroid

disease, I haven't even bothered to find out what effects hasimotos disease

has on me. I am not my medical problems. I am a child of God with a job to

do here on earth. The most troublesome problem on a daily basis, and

comparitively rather minor, is osteo arthritis. It keeps reminding you with

pain. But when you know God is with you, that is so much more important

than how you might leave this world, or what will happen to you while you

are here. Now when I had an abcessed tooth that really flared up after my

last angioplasty, hurt from the top of my head down the side of my neck,

that was hard to keep out of my mind,[?] but I still continued to do as much

as possible. Jan H

On Mon, Sep 14, 2009 at 11:53 AM, Phyllis Delgado <pdelgado354@ yahoo.com>wrote:

> wow, you don't let cirrhosis occupy your mind much? Tell me how to

> accomplish that?

>

>

>

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 10:10:30 PM

> Subject: Re: (unknown)

>

>

> Yes, Dave, Hospice care is for the end-of-life and is something you

> shouldn't consider until you have made your decision regarding

> transplant. Give it much thought and consideration, both for yourself and

> your grandson.

>

> None of us knows the number of our days. We walk about every day living

> like we think we will live forever; but the truth is that any of us could go

> within the next minute. I don't allow the thought that I have cirrhosis to

> occupy too much of my time. I live my life and try my best to take care of

> myself. When my time comes, it comes; end of story. I'm not a fatalist,

> just a realist.

>

> I am always here if you need a friend or an ear to listen. I can't hide my

> faith, but I won't shove it down your throat either. Good luck with the

> call to your doctor tomorrow!

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 6:57:15 PM

> Subject: Re: (unknown)

>

>

> Diane, thanks for the moral support, and for praying for me. I guess you

> could say, Lord knows I need it. What you were saying about my grandson is

> very true. His Grandmother, my X, is very sick also. He could easily lose

> out on knowing either of us well. He just turned two. My circumstances are

> so much better than some that it annoys me I get on so much self-pity. I

> could, when time comes, look into hospice. I think hospice is for the last

> 6 months. I may be wrong, though. I don't know how far away I am from

> needing a transplant yet. Several doc's gave me 5 yrs. a little less than 4

> yrs. ago. My liver doc would not give me a length, saying he does nor

> forecast the future. I appreciated him for that answer, and the others for

> their honesty. As they say be careful what you ask. I kind of wish now,

> when I asked, the other's would not have told me. I am sure they were going

> by percentage's giving my symptoms. If they

> were correct I am about 16 months away. As I have often thought, since

> their prediction, very few really know how long they have or how they will

> go. Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 6:23:35 PM

> Subject: Re: (unknown)

>

>

> Dave, you have in no way offended me. To say that have faith, without

> question, is certainly far from reality. I have come to a place in my life

> where I rarely allow myself to question God; that has not always been so. I

> struggled with my faith for many, many years through some terribly difficult

> circumstances. I hope I won't offend you by saying I will pray for you and

> ask you not to give up on God. He hasn't given up on you.

>

> That being said, I do honestly care about you and about what you are going

> through. Cirrhosis is hard, just plain HARD. Every day is a journey into

> the unknown and leads us down paths we never dreamed we would have to walk.

> Uncertainly and depression are familiar friends. I do so hope your doctor

> can help you with the edema. BTW, I just wanted to add that you should give

> serious consideration to that transplant. Whether you do it or not, give it

> every chance when deciding. You have a beautiful grandson who would so

> desperately miss his Grandpa, and I'd be willing to bet your daughter would

> sure miss you too! Sometimes, bad things happen to good people so they can

> reacess their lives and make fresh starts.

>

> I'm praying for you Dave!

>

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 6:13:15 PM

> Subject: Re: (unknown)

>

>

> Diane, this is one of my biggest problems. I do not have a strong belief

> in the here after, religion, etc. I do not want to offend those that do. I

> wish I did, but I don't. I see how much it helps people, but I have not

> been able to grasp the concept. I come from a family that both parents were

> strong believers and they took me to church regularly. I don't know why I

> have had such a hard time with faith. I am not of the belief that the world

> happened in a vacuum. There is a degree of spirituality in me. I'm sure

> you don't want me to go into the usual talk of why bad things happen to good

> people and good things happen to bad people. I just am unable to square the

> suffering people endure with the idea of God having his hand on the

> throttle, so to speak. I hope I have not offended you or anyone. I admire

> your ability to believe without question. I know there is a force of good

> in the universe, and certainly a evil in the

> universe. I know it would help me if I had your faith, but it avoids me or

> I avoid it. Whichever way it is, the outcome for me is the same, lack of

> faith for which I, in the end, pay the price.

> Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 5:28:49 PM

> Subject: Re: (unknown)

>

>

> Hi Dave,

>

> No, Terry opted not to try for a transplant. He had been at death's door a

> couple of times prior to even knowing about his liver disease. He felt much

> more peaceful about death than dealing with life after a transplant. Also,

> he had a genetic disorder that predisposed him to liver disease. He thought

> it would be selfish of him to ask for a donor liver, knowing his body would

> begin attacking it as soon as it was transplanted, when so few are

> available. It was so hard to sit by and watch him make that decision, but I

> had watched Momma die of renal failure and had seen all she had gone through

> with the dialysis and didn't want to emotionally force anything on Terry

> that he wasn't ready to deal with. I told him I would support him fully in

> whatever decision he made; if he chose to go for the transplant, I would be

> there every step of the way but if not, I would also help him live his life

> to the fullest until the time came for him to go home

> with the Lord. As hard as it was to give him up, I did so knowing I had

> done for him what his heart desired and loved him completely until Jesus

> came for him.

>

> Now that I have cirrhosis as well, I am much in the same boat as

> you. Terry and I had three children who never made it to this world. I

> have two sisters and a niece and four nephews who love me dearly. However,

> I am not comfortable asking them to take on the role of my caregiver as this

> disease progresses. I know how hard that is on the loved one and I don't

> want them to have to go through that. I have already started checking in to

> in-patient hospice care for when that time comes. Whether I will consider a

> transplant or not is something I haven't really even thought about yet. I

> pray about it and just ask the Lord to help me make the right decision when

> the time comes.

>

> Whatever decision you make, please know that I am praying for you. I do

> not look forward to dealing with this disease, but I also don't allow myself

> to worry about it. I simply leave it with the Lord and know He already has

> a plan and all I have to do is submit myself to His will and plan for my

> life. My faith carries me through this, just as it has through so many

> other areas of my life.

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 5:05:45 PM

> Subject: Re: (unknown)

>

>

> Thanks for writing back Diane..And I am sorry you had to go through this

> with your husband...I know from dealing with close friends and family how

> difficult a progressive fatal disease is on the caregiver and others

> close..if I may ask, did your husband have a transplant? I am wrestling

> with that decision when it comes, and whether to put myself and family

> through that. I don't really have someone I can move in with during the

> recovery process, and would not put that burden on my daughter and her

> significant other. For one there is not room in her house, except a

> finished basement, and I don't see how someone could negotiate the stairs in

> that condition. For another reason her relationship is fragile I believe,

> and that would certainly not help, and though we are civil, we really don't

> care a lot for each other. I know some go into medical centers to

> recuperate and I'm fine with that option, since likely the progression

> either way will put

> me into one, but I still have a lot of soul searching to do about a

> transplant. Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 4:42:49 PM

> Subject: Re: (unknown)

>

>

> Dave, I am so sorry. Dealing with this disease wears so quickly on your

> nerves and makes you so sad, so often. Please know I am praying for you.

> Do make that call to your doctor tomorrow morning, especially since this is

> your first experience with the swelling in your extremities. Terry, my late

> husband, used to swell so badly in his feet that he couldn't walk because

> his feet would actually be rounded on the bottom and wouldn't flaten out,

> even when he was fully weight-bearing. I cannot say I know what you are

> going through from my personal experience, but I do know from having been

> with Terry as he went through it. It is agonizing for you and for those who

> love you. Again, I am so sorry that this has infringed upon your weekend

> with your daughter and grandson. Please update us after you speak with your

> doctor. My prayers are with you.

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 11:59:08 AM

> Subject: (unknown)

>

>

> I'm sorry I only seem to come here when things are bad, but seems they are

> mostly that way now...what has always been a great weekend when my daughter

> and grandson come up was full of agony for most of my visit...my legs, feet,

> and ankles swelled up so bad I could hardly walk, and my feet hurt very

> bad...finally this noon the swelling has mostly gone down..but I wonder for

> how long? I should call my doc tomorrow, but I get weary of doc's...this is

> a first in my journey of my feet and ankles swelling like this...I thought

> the ascites was bad, but that is more horrific..walking is terrible and just

> laying with my feet up to try and make the pain go away...and knowing things

> will, only progress into being worse...

> Dave

>

>

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Guest guest

I konw exactly how you felt. We do that same thing. It's so nic eto forget about

it for awhile and make plans!

                                       

                                    Love,Jill

 

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

From: diane chandler <dianechandler@ att.net>

Subject: Re: (unknown)

To: livercirrhosissuppo rtyahoogroups (DOT) com

Date: Monday, September 14, 2009, 2:10 AM

 

Yes, Dave, Hospice care is for the end-of-life and is something you shouldn't

consider until you have made your decision regarding transplant.  Give it much

thought and consideration, both for yourself and your grandson.

None of us knows the number of our days.  We walk about every day living like we

think we will live forever; but the truth is that any of us could go within the

next minute.  I don't allow the thought that I have cirrhosis to occupy too much

of my time.  I live my life and try my best to take care of myself.  When my

time comes, it comes; end of story.  I'm not a fatalist, just a realist.  

I am always here if you need a friend or an ear to listen.  I can't hide my

faith, but I won't shove it down your throat either.  Good luck with the call to

your doctor tomorrow!

Warm Hugs........ ...

 

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: dave dodds <daveliltoe@ yahoo. com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 6:57:15 PM

Subject: Re: (unknown)

 

Diane, thanks for the moral support, and for praying for me.  I guess you could

say, Lord knows I need it.  What you were saying about my grandson is very

true.  His Grandmother, my X, is very sick also.  He could easily lose out on

knowing either of us well.  He just turned two.  My circumstances are so much

better than some that it annoys me I get on so much self-pity.  I could, when

time comes, look into hospice.  I think hospice is for the last 6 months.  I may

be wrong, though.  I don't know how far away I am from needing a transplant

yet.  Several doc's gave me 5 yrs. a little less than 4 yrs. ago.  My liver doc

would not give me a length, saying he does nor forecast the future.  I

appreciated him for that answer, and the others for their honesty.  As they say

be careful what you ask.  I kind of wish now, when I asked, the other's would

not have told me.  I am sure they were going by percentage's giving my

symptoms.  If they

were correct I am about 16 months away.  As I have often thought, since their

prediction, very few really know how long they have or how they will go.   Dave

____________ _________ _________ __

From: diane chandler <dianechandler@ att.net>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 6:23:35 PM

Subject: Re: (unknown)

 

Dave, you have in no way offended me.  To say that have faith, without

question, is certainly far from reality.  I have come to a place in my life

where I rarely allow myself to question God; that has not always been so...  I

struggled with my faith for many, many years through some terribly difficult

circumstances.  I hope I won't offend you by saying I will pray for you and ask

you not to give up on God.  He hasn't given up on you. 

That being said, I do honestly care about you and about what you are going

through.  Cirrhosis is hard, just plain HARD.  Every day is a journey into the

unknown and leads us down paths we never dreamed we would have to walk. 

Uncertainly and depression are familiar friends.  I do so hope your doctor can

help you with the edema.  BTW, I just wanted to add that you should give serious

consideration to that transplant.  Whether you do it or not, give it every

chance when deciding.  You have a beautiful grandson who would so desperately

miss his Grandpa, and I'd be willing to bet your daughter would sure miss you

too!  Sometimes, bad things happen to good people so they can reacess their

lives and make fresh starts. 

I'm praying for you Dave!

 

Warm Hugs........ ...

 

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: dave dodds <daveliltoe@ yahoo. com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 6:13:15 PM

Subject: Re: (unknown)

 

Diane, this is one of my biggest problems.  I do not have a strong belief in the

here after, religion, etc.  I do not want to offend those that do.  I wish I

did, but I don't.  I see how much it helps people, but I have not been able to

grasp the concept.  I come from a family that both parents were strong believers

and they took me to church regularly.  I don't know why I have had such a hard

time with faith.  I am not of the belief that the world happened in a vacuum. 

There is a degree of spirituality in me.  I'm sure you don't want me to go into

the usual talk of why bad things happen to good people and good things happen to

bad people...  I just am unable to square the suffering people endure with the

idea of God having his hand on the throttle, so to speak.  I hope I have not

offended you or anyone.  I admire your ability to believe without question.  I

know there is a force of good in the universe, and certainly a evil in the

universe.  I know it would help me if I had your faith, but it avoids me or I

avoid it.  Whichever way it is, the outcome for me is the same, lack of faith

for which I, in the end, pay the price.     

 Dave

____________ _________ _________ __

From: diane chandler <dianechandler@ att.net>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 5:28:49 PM

Subject: Re: (unknown)

 

Hi Dave,

No, Terry opted not to try for a transplant.  He had been at death's door a

couple of times prior to even knowing about his liver disease.  He felt much

more peaceful about death than dealing with life after a transplant.  Also, he

had a genetic disorder that predisposed him to liver disease.  He thought it

would be selfish of him to ask for a donor liver, knowing his body would begin

attacking it as soon as it was transplanted, when so few are available.  It was

so hard to sit by and watch him make that decision, but I had watched Momma die

of renal failure and had seen all she had gone through with the dialysis and

didn't want to emotionally force anything on Terry that he wasn't ready to deal

with.  I told him I would support him fully in whatever decision he made; if he

chose to go for the transplant, I would be there every step of the way but if

not, I would also help him live his life to the fullest until the time came for

him to go home

with the Lord.  As hard as it was to give him up, I did so knowing I had done

for him what his heart desired and loved him completely until Jesus came for

him.

Now that I have cirrhosis as well, I am much in the same boat as you.  Terry and

I had three children who never made it to this world.  I have two sisters and a

niece and four nephews who love me dearly.  However, I am not comfortable asking

them to take on the role of my caregiver as this disease progresses.  I know how

hard that is on the loved one and I don't want them to have to go through that. 

I have already started checking in to in-patient hospice care for when that time

comes.  Whether I will consider a transplant or not is something I haven't

really even thought about yet.  I pray about it and just ask the Lord to help me

make the right decision when the time comes.

Whatever decision you make, please know that I am praying for you.  I do not

look forward to dealing with this disease, but I also don't allow myself to

worry about it.  I simply leave it with the Lord and know He already has a plan

and all I have to do is submit myself to His will and plan for my life.  My

faith carries me through this, just as it has through so many other areas of my

life.

 

Warm Hugs........ ...

 

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: dave dodds <daveliltoe@ yahoo. com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 5:05:45 PM

Subject: Re: (unknown)

 

Thanks for writing back Diane..And I am sorry you had to go through this with

your husband...I know from dealing with close friends and family how difficult a

progressive fatal disease is on the caregiver and others close..if I may ask,

did your husband have a transplant?  I am wrestling with that decision when it

comes, and whether to put myself and family through that.  I don't really have

someone I can move in with during the recovery process, and would not put that

burden on my daughter and her significant other.  For one there is not room in

her house, except a finished basement, and I don't see how someone could

negotiate the stairs in that condition.  For another reason her relationship is

fragile I believe, and that would certainly not help, and though we are civil,

we really don't care a lot for each other.  I know some go into medical centers

to recuperate and I'm fine with that option, since likely the progression either

way will put

me into one, but I still have a lot of soul searching to do about a

transplant.     Dave

____________ _________ _________ __

From: diane chandler <dianechandler@ att.net>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 4:42:49 PM

Subject: Re: (unknown)

 

Dave, I am so sorry.  Dealing with this disease wears so quickly on your nerves

and makes you so sad, so often.  Please know I am praying for you.  Do make that

call to your doctor tomorrow morning, especially since this is your first

experience with the swelling in your extremities.  Terry, my late husband, used

to swell so badly in his feet that he couldn't walk because his feet would

actually be rounded on the bottom and wouldn't flaten out, even when he was

fully weight-bearing.  I cannot say I know what you are going through from my

personal experience, but I do know from having been with Terry as he went

through it.  It is agonizing for you and for those who love you.  Again, I am so

sorry that this has infringed upon your weekend with your daughter and

grandson.  Please update us after you speak with your doctor.  My prayers are

with you.

 

Warm Hugs........ ...

 

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: dave dodds <daveliltoe@ yahoo. com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 11:59:08 AM

Subject: (unknown)

 

I'm sorry I only seem to come here when things are bad, but seems they are

mostly that way now...what has always been a great weekend when my daughter and

grandson come up was full of agony for most of my visit...my legs, feet, and

ankles swelled up so bad I could hardly walk, and my feet hurt very

bad...finally this noon the swelling has mostly gone down..but I wonder for how

long?  I should call my doc tomorrow, but I get weary of doc's...this is a first

in my journey of my feet and ankles swelling like this...I thought the ascites

was bad, but that is more horrific..walking is terrible and just laying with my

feet up to try and make the pain go away...and knowing things will, only

progress into being worse... 

 Dave

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One step at a time, dear Diane.  Only you can know when that time is right, if

ever. 

                                       

                                    Love,Jill

 

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

From: dave dodds <daveliltoe@ yahoo. com>

Subject: Re: (unknown)

To: livercirrhosissuppo rtyahoogroups (DOT) com

Date: Sunday, September 13, 2009, 7:57 PM

 

Diane, thanks for the moral support, and for praying for me.  I guess you could

say, Lord knows I need it.  What you were saying about my grandson is very

true.  His Grandmother, my X, is very sick also.  He could easily lose out on

knowing either of us well.  He just turned two.  My circumstances are so much

better than some that it annoys me I get on so much self-pity.  I could, when

time comes, look into hospice.  I think hospice is for the last 6 months.  I may

be wrong, though.  I don't know how far away I am from needing a transplant

yet.  Several doc's gave me 5 yrs. a little less than 4 yrs. ago.  My liver doc

would not give me a length, saying he does nor forecast the future.  I

appreciated him for that answer, and the others for their honesty.  As they say

be careful what you ask.  I kind of wish now, when I asked, the other's would

not have told me.  I am sure they were going by percentage's giving my

symptoms.  If they

were correct I am about 16 months away.  As I have often thought, since their

prediction, very few really know how long they have or how they will go.   Dave

____________ _________ _________ __

From: diane chandler <dianechandler@ att.net>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 6:23:35 PM

Subject: Re: (unknown)

 

Dave, you have in no way offended me.  To say that have faith, without

question, is certainly far from reality.  I have come to a place in my life

where I rarely allow myself to question God; that has not always been so...  I

struggled with my faith for many, many years through some terribly difficult

circumstances.  I hope I won't offend you by saying I will pray for you and ask

you not to give up on God.  He hasn't given up on you. 

That being said, I do honestly care about you and about what you are going

through.  Cirrhosis is hard, just plain HARD.  Every day is a journey into the

unknown and leads us down paths we never dreamed we would have to walk. 

Uncertainly and depression are familiar friends.  I do so hope your doctor can

help you with the edema.  BTW, I just wanted to add that you should give serious

consideration to that transplant.  Whether you do it or not, give it every

chance when deciding.  You have a beautiful grandson who would so desperately

miss his Grandpa, and I'd be willing to bet your daughter would sure miss you

too!  Sometimes, bad things happen to good people so they can reacess their

lives and make fresh starts. 

I'm praying for you Dave!

 

Warm Hugs........ ...

 

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: dave dodds <daveliltoe@ yahoo. com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 6:13:15 PM

Subject: Re: (unknown)

 

Diane, this is one of my biggest problems.  I do not have a strong belief in the

here after, religion, etc.  I do not want to offend those that do.  I wish I

did, but I don't.  I see how much it helps people, but I have not been able to

grasp the concept.  I come from a family that both parents were strong believers

and they took me to church regularly.  I don't know why I have had such a hard

time with faith.  I am not of the belief that the world happened in a vacuum. 

There is a degree of spirituality in me.  I'm sure you don't want me to go into

the usual talk of why bad things happen to good people and good things happen to

bad people...  I just am unable to square the suffering people endure with the

idea of God having his hand on the throttle, so to speak.  I hope I have not

offended you or anyone.  I admire your ability to believe without question.  I

know there is a force of good in the universe, and certainly a evil in the

universe.  I know it would help me if I had your faith, but it avoids me or I

avoid it.  Whichever way it is, the outcome for me is the same, lack of faith

for which I, in the end, pay the price.     

 Dave

____________ _________ _________ __

From: diane chandler <dianechandler@ att.net>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 5:28:49 PM

Subject: Re: (unknown)

 

Hi Dave,

No, Terry opted not to try for a transplant.  He had been at death's door a

couple of times prior to even knowing about his liver disease.  He felt much

more peaceful about death than dealing with life after a transplant.  Also, he

had a genetic disorder that predisposed him to liver disease.  He thought it

would be selfish of him to ask for a donor liver, knowing his body would begin

attacking it as soon as it was transplanted, when so few are available.  It was

so hard to sit by and watch him make that decision, but I had watched Momma die

of renal failure and had seen all she had gone through with the dialysis and

didn't want to emotionally force anything on Terry that he wasn't ready to deal

with.  I told him I would support him fully in whatever decision he made; if he

chose to go for the transplant, I would be there every step of the way but if

not, I would also help him live his life to the fullest until the time came for

him to go home

with the Lord.  As hard as it was to give him up, I did so knowing I had done

for him what his heart desired and loved him completely until Jesus came for

him.

Now that I have cirrhosis as well, I am much in the same boat as you.  Terry and

I had three children who never made it to this world.  I have two sisters and a

niece and four nephews who love me dearly.  However, I am not comfortable asking

them to take on the role of my caregiver as this disease progresses.  I know how

hard that is on the loved one and I don't want them to have to go through that. 

I have already started checking in to in-patient hospice care for when that time

comes.  Whether I will consider a transplant or not is something I haven't

really even thought about yet.  I pray about it and just ask the Lord to help me

make the right decision when the time comes.

Whatever decision you make, please know that I am praying for you.  I do not

look forward to dealing with this disease, but I also don't allow myself to

worry about it.  I simply leave it with the Lord and know He already has a plan

and all I have to do is submit myself to His will and plan for my life.  My

faith carries me through this, just as it has through so many other areas of my

life.

 

Warm Hugs........ ...

 

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: dave dodds <daveliltoe@ yahoo. com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 5:05:45 PM

Subject: Re: (unknown)

 

Thanks for writing back Diane..And I am sorry you had to go through this with

your husband...I know from dealing with close friends and family how difficult a

progressive fatal disease is on the caregiver and others close..if I may ask,

did your husband have a transplant?  I am wrestling with that decision when it

comes, and whether to put myself and family through that.  I don't really have

someone I can move in with during the recovery process, and would not put that

burden on my daughter and her significant other.  For one there is not room in

her house, except a finished basement, and I don't see how someone could

negotiate the stairs in that condition.  For another reason her relationship is

fragile I believe, and that would certainly not help, and though we are civil,

we really don't care a lot for each other.  I know some go into medical centers

to recuperate and I'm fine with that option, since likely the progression either

way will put

me into one, but I still have a lot of soul searching to do about a

transplant.     Dave

____________ _________ _________ __

From: diane chandler <dianechandler@ att.net>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 4:42:49 PM

Subject: Re: (unknown)

 

Dave, I am so sorry.  Dealing with this disease wears so quickly on your nerves

and makes you so sad, so often.  Please know I am praying for you.  Do make that

call to your doctor tomorrow morning, especially since this is your first

experience with the swelling in your extremities.  Terry, my late husband, used

to swell so badly in his feet that he couldn't walk because his feet would

actually be rounded on the bottom and wouldn't flaten out, even when he was

fully weight-bearing.  I cannot say I know what you are going through from my

personal experience, but I do know from having been with Terry as he went

through it.  It is agonizing for you and for those who love you.  Again, I am so

sorry that this has infringed upon your weekend with your daughter and

grandson.  Please update us after you speak with your doctor.  My prayers are

with you.

 

Warm Hugs........ ...

 

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: dave dodds <daveliltoe@ yahoo. com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 11:59:08 AM

Subject: (unknown)

 

I'm sorry I only seem to come here when things are bad, but seems they are

mostly that way now...what has always been a great weekend when my daughter and

grandson come up was full of agony for most of my visit...my legs, feet, and

ankles swelled up so bad I could hardly walk, and my feet hurt very

bad...finally this noon the swelling has mostly gone down..but I wonder for how

long?  I should call my doc tomorrow, but I get weary of doc's...this is a first

in my journey of my feet and ankles swelling like this...I thought the ascites

was bad, but that is more horrific..walking is terrible and just laying with my

feet up to try and make the pain go away...and knowing things will, only

progress into being worse... 

 Dave

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Guest guest

Hi Debbie..I don't know if I've given in to this disease or just starting to

accept the reality of it.  When I first was diagnosed, and still went back to

work, I could hardly talk to my co-worker I did trips with without breaking

down.  Because I knew very quickly I would be unable to do the strenuous job I

loved, and soon I would not see the beauty I had worked in for 11 years.  As

time has gone by other realities came to me.  I am in the acceptance

process still, but for different realities.  I still am likely a way from the

decision of a transplant likely, hopefully.  Some of the riddles of

religion's are quite troubling for me.  I am leery of getting into them because

of the format here, and not wanting to offend anyone.  I saw your post about the

pain medication.  I am prescribed the hydrocodone with the least amount of

Tylenol.  I was told to keep the Tylenol below 2000 mg. a day..normal max for

uncompensated liver is 4000.  My liver

doc was most concerned about my history, and that it would trigger my addictive

behavior from the past.  I walk a thin line of controlling my pain, and taking

it when I could go without.  There is no doubt that any thing the liver has to

filter is not good for me.  But I don't want to live in pain either.  It is a

'catch 22'.  I usually do not go to the 2000 mg. I hope you are doing better. 

peace, Dave

________________________________

To: livercirrhosissupport

Sent: Monday, September 14, 2009 9:29:33 AM

Subject: Re: (unknown)

 

Dave, can I ask what some of the riddles are? MANY questions about life can be

so SIMPLY answered that it's hard to see. Kind of like can't see the forrest for

the trees. And it sounds like you've already given up and given in to this

disease. Don't get me wrong, I hate all of this %$#@ EVERY single day trying to

cope with what is currently going on with my body and wondering and worrying

what and when something will next go wrong but none of us have an expiration

date stamped on our foreheads and we truly do not know what the day holds. Now

I'm probably one of the most negative people on this earth but I know that I

really don't know what lies in store for me. Best wishes~~~Debbie- -- In

livercirrhosissuppo rtyahoogroups (DOT) com, dave dodds <daveliltoe@ ...> wrote:

>

> Jan, sometimes I think knowledge gets in my way.  Not that I am more

intelligent, but I have studied about major world religions, done meditation, 12

step programs, conversed with several theology professor' s I had on wilderness

trips, etc.  I've been searching most all my life for the answer to the riddle's

that confound me.  I appreciate all of that, though.  I believe that when my

time comes, whatever lays out there after death, my creator will understand my

wonderings and wanderings.   Dave

>

>

>

>

> ____________ _________ _________ __

> From: Jan Holman <janholman@. ..>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 7:10:24 PM

> Subject: Re: (unknown)

>

>  

> Dave - a gastro told me more than 8 years ago that I had 2 to 3 years to

> live. He was wrong, not my doctor any more. After making it past the 2

> year mark, I asked to see a transplant evaluation team. That experience was

> terrible, not going there anymore either. They were just the opposite of

> the first one. So, I asked to go to the Mayo Clinic. I am from Minnesota,

> and the Mayo Clinic is next to God up there. I knew I could trust them. It

> was a better experience, caring people but they really couldn't tell me much

> either except that I wouldn't qualify for a transplant here in AZ, at that

> time because of my other medical conditions, and now you can add my age,

> 66.

>

> Can I say something about faith. It isn't something you learn to have, it

> is a decision, a commitment, so doesn't matter how much knowledge you have

> to start. If you were to make a commitment, then you would probably have

> the urge to know more. Like Diane, there is no way I could get through my

> life without knowing that God is there all the time. With his help, I can

> get through three potentially fatal illnesses and a number of bothersome or

> besky problems. And I can enjoy my life. Jan H

>

> On Sun, Sep 13, 2009 at 4:57 PM, dave dodds <daveliltoe@ yahoo. com> wrote:

>

> > Diane, thanks for the moral support, and for praying for me. I guess you

> > could say, Lord knows I need it. What you were saying about my grandson is

> > very true. His Grandmother, my X, is very sick also. He could easily lose

> > out on knowing either of us well. He just turned two. My circumstances are

> > so much better than some that it annoys me I get on so much self-pity. I

> > could, when time comes, look into hospice. I think hospice is for the last

> > 6 months. I may be wrong, though. I don't know how far away I am from

> > needing a transplant yet. Several doc's gave me 5 yrs. a little less than 4

> > yrs. ago. My liver doc would not give me a length, saying he does nor

> > forecast the future. I appreciated him for that answer, and the others for

> > their honesty. As they say be careful what you ask. I kind of wish now,

> > when I asked, the other's would not have told me. I am sure they were going

> > by percentage's giving my symptoms. If they

> > were correct I am about 16 months away. As I have often thought, since

> > their prediction, very few really know how long they have or how they will

> > go. Dave

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: diane chandler <dianechandler@ att.net>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Sunday, September 13, 2009 6:23:35 PM

> > Subject: Re: (unknown)

> >

> >

> > Dave, you have in no way offended me. To say that have faith, without

> > question, is certainly far from reality. I have come to a place in my life

> > where I rarely allow myself to question God; that has not always been so. I

> > struggled with my faith for many, many years through some terribly difficult

> > circumstances. I hope I won't offend you by saying I will pray for you and

> > ask you not to give up on God. He hasn't given up on you.

> >

> > That being said, I do honestly care about you and about what you are going

> > through. Cirrhosis is hard, just plain HARD. Every day is a journey into

> > the unknown and leads us down paths we never dreamed we would have to walk.

> > Uncertainly and depression are familiar friends. I do so hope your doctor

> > can help you with the edema. BTW, I just wanted to add that you should give

> > serious consideration to that transplant. Whether you do it or not, give it

> > every chance when deciding. You have a beautiful grandson who would so

> > desperately miss his Grandpa, and I'd be willing to bet your daughter would

> > sure miss you too! Sometimes, bad things happen to good people so they can

> > reacess their lives and make fresh starts.

> >

> > I'm praying for you Dave!

> >

> >

> > Warm Hugs........ ...

> >

> > Di

> > http://auntdisexper imentallife. blogspot. com/

> >

> > ____________ _________ _________ __

> > From: dave dodds <daveliltoe@ yahoo. com>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Sunday, September 13, 2009 6:13:15 PM

> > Subject: Re: (unknown)

> >

> >

> > Diane, this is one of my biggest problems. I do not have a strong belief

> > in the here after, religion, etc. I do not want to offend those that do. I

> > wish I did, but I don't. I see how much it helps people, but I have not

> > been able to grasp the concept. I come from a family that both parents were

> > strong believers and they took me to church regularly. I don't know why I

> > have had such a hard time with faith. I am not of the belief that the world

> > happened in a vacuum. There is a degree of spirituality in me. I'm sure

> > you don't want me to go into the usual talk of why bad things happen to good

> > people and good things happen to bad people. I just am unable to square the

> > suffering people endure with the idea of God having his hand on the

> > throttle, so to speak. I hope I have not offended you or anyone. I admire

> > your ability to believe without question. I know there is a force of good

> > in the universe, and certainly a evil in the

> > universe. I know it would help me if I had your faith, but it avoids me or

> > I avoid it. Whichever way it is, the outcome for me is the same, lack of

> > faith for which I, in the end, pay the price.

> > Dave

> >

> > ____________ _________ _________ __

> > From: diane chandler <dianechandler@ att.net>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Sunday, September 13, 2009 5:28:49 PM

> > Subject: Re: (unknown)

> >

> >

> > Hi Dave,

> >

> > No, Terry opted not to try for a transplant. He had been at death's door a

> > couple of times prior to even knowing about his liver disease. He felt much

> > more peaceful about death than dealing with life after a transplant. Also,

> > he had a genetic disorder that predisposed him to liver disease. He thought

> > it would be selfish of him to ask for a donor liver, knowing his body would

> > begin attacking it as soon as it was transplanted, when so few are

> > available. It was so hard to sit by and watch him make that decision, but I

> > had watched Momma die of renal failure and had seen all she had gone through

> > with the dialysis and didn't want to emotionally force anything on Terry

> > that he wasn't ready to deal with. I told him I would support him fully in

> > whatever decision he made; if he chose to go for the transplant, I would be

> > there every step of the way but if not, I would also help him live his life

> > to the fullest until the time came for him to go home

> > with the Lord. As hard as it was to give him up, I did so knowing I had

> > done for him what his heart desired and loved him completely until Jesus

> > came for him.

> >

> > Now that I have cirrhosis as well, I am much in the same boat as

> > you. Terry and I had three children who never made it to this world. I

> > have two sisters and a niece and four nephews who love me dearly. However,

> > I am not comfortable asking them to take on the role of my caregiver as this

> > disease progresses. I know how hard that is on the loved one and I don't

> > want them to have to go through that. I have already started checking in to

> > in-patient hospice care for when that time comes. Whether I will consider a

> > transplant or not is something I haven't really even thought about yet. I

> > pray about it and just ask the Lord to help me make the right decision when

> > the time comes.

> >

> > Whatever decision you make, please know that I am praying for you. I do

> > not look forward to dealing with this disease, but I also don't allow myself

> > to worry about it. I simply leave it with the Lord and know He already has

> > a plan and all I have to do is submit myself to His will and plan for my

> > life. My faith carries me through this, just as it has through so many

> > other areas of my life.

> >

> > Warm Hugs........ ...

> >

> > Di

> > http://auntdisexper imentallife. blogspot. com/

> >

> > ____________ _________ _________ __

> > From: dave dodds <daveliltoe@ yahoo. com>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Sunday, September 13, 2009 5:05:45 PM

> > Subject: Re: (unknown)

> >

> >

> > Thanks for writing back Diane..And I am sorry you had to go through this

> > with your husband...I know from dealing with close friends and family how

> > difficult a progressive fatal disease is on the caregiver and others

> > close..if I may ask, did your husband have a transplant? I am wrestling

> > with that decision when it comes, and whether to put myself and family

> > through that. I don't really have someone I can move in with during the

> > recovery process, and would not put that burden on my daughter and her

> > significant other. For one there is not room in her house, except a

> > finished basement, and I don't see how someone could negotiate the stairs in

> > that condition. For another reason her relationship is fragile I believe,

> > and that would certainly not help, and though we are civil, we really don't

> > care a lot for each other. I know some go into medical centers to

> > recuperate and I'm fine with that option, since likely the progression

> > either way will put

> > me into one, but I still have a lot of soul searching to do about a

> > transplant. Dave

> >

> > ____________ _________ _________ __

> > From: diane chandler <dianechandler@ att.net>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Sunday, September 13, 2009 4:42:49 PM

> > Subject: Re: (unknown)

> >

> >

> > Dave, I am so sorry. Dealing with this disease wears so quickly on your

> > nerves and makes you so sad, so often. Please know I am praying for you.

> > Do make that call to your doctor tomorrow morning, especially since this is

> > your first experience with the swelling in your extremities. Terry, my late

> > husband, used to swell so badly in his feet that he couldn't walk because

> > his feet would actually be rounded on the bottom and wouldn't flaten out,

> > even when he was fully weight-bearing. I cannot say I know what you are

> > going through from my personal experience, but I do know from having been

> > with Terry as he went through it. It is agonizing for you and for those who

> > love you. Again, I am so sorry that this has infringed upon your weekend

> > with your daughter and grandson. Please update us after you speak with your

> > doctor. My prayers are with you.

> >

> > Warm Hugs........ ...

> >

> > Di

> > http://auntdisexper imentallife. blogspot. com/

> >

> > ____________ _________ _________ __

> > From: dave dodds <daveliltoe@ yahoo. com>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Sunday, September 13, 2009 11:59:08 AM

> > Subject: (unknown)

> >

> >

> > I'm sorry I only seem to come here when things are bad, but seems they are

> > mostly that way now...what has always been a great weekend when my daughter

> > and grandson come up was full of agony for most of my visit...my legs, feet,

> > and ankles swelled up so bad I could hardly walk, and my feet hurt very

> > bad...finally this noon the swelling has mostly gone down..but I wonder for

> > how long? I should call my doc tomorrow, but I get weary of doc's...this is

> > a first in my journey of my feet and ankles swelling like this...I thought

> > the ascites was bad, but that is more horrific..walking is terrible and just

> > laying with my feet up to try and make the pain go away...and knowing things

> > will, only progress into being worse...

> > Dave

> >

> >

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Guest guest

Dave - if you want to discuss your riddles, you are free to email me

privately at janholman@... I can't say I can answer all your

questions, but willing to try, and will ask others if I can't. Jan H

> Hi Debbie..I don't know if I've given in to this disease or just starting

> to accept the reality of it. When I first was diagnosed, and still went

> back to work, I could hardly talk to my co-worker I did trips with without

> breaking down. Because I knew very quickly I would be unable to do the

> strenuous job I loved, and soon I would not see the beauty I had worked in

> for 11 years. As time has gone by other realities came to me. I am in the

> acceptance process still, but for different realities. I still am likely a

> way from the decision of a transplant likely, hopefully. Some of the

> riddles of religion's are quite troubling for me. I am leery of getting

> into them because of the format here, and not wanting to offend anyone. I

> saw your post about the pain medication. I am prescribed the hydrocodone

> with the least amount of Tylenol. I was told to keep the Tylenol below 2000

> mg. a day..normal max for uncompensated liver is 4000. My liver

> doc was most concerned about my history, and that it would trigger my

> addictive behavior from the past. I walk a thin line of controlling my

> pain, and taking it when I could go without. There is no doubt that any

> thing the liver has to filter is not good for me. But I don't want to live

> in pain either. It is a 'catch 22'. I usually do not go to the 2000 mg. I

> hope you are doing better. peace, Dave

>

>

>

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Monday, September 14, 2009 9:29:33 AM

> Subject: Re: (unknown)

>

>

> Dave, can I ask what some of the riddles are? MANY questions about life can

> be so SIMPLY answered that it's hard to see. Kind of like can't see the

> forrest for the trees. And it sounds like you've already given up and given

> in to this disease. Don't get me wrong, I hate all of this %$#@ EVERY single

> day trying to cope with what is currently going on with my body and

> wondering and worrying what and when something will next go wrong but none

> of us have an expiration date stamped on our foreheads and we truly do not

> know what the day holds. Now I'm probably one of the most negative people on

> this earth but I know that I really don't know what lies in store for me.

> Best wishes~~~Debbie- -- In livercirrhosissuppo rtyahoogroups (DOT) com, dave

> dodds <daveliltoe@ ...> wrote:

> >

> > Jan, sometimes I think knowledge gets in my way. Not that I am more

> intelligent, but I have studied about major world religions, done

> meditation, 12 step programs, conversed with several theology professor' s I

> had on wilderness trips, etc. I've been searching most all my life for the

> answer to the riddle's that confound me. I appreciate all of that, though.

> I believe that when my time comes, whatever lays out there after death, my

> creator will understand my wonderings and wanderings. Dave

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: Jan Holman <janholman@. ..>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Sunday, September 13, 2009 7:10:24 PM

> > Subject: Re: (unknown)

> >

> >

> > Dave - a gastro told me more than 8 years ago that I had 2 to 3 years to

> > live. He was wrong, not my doctor any more. After making it past the 2

> > year mark, I asked to see a transplant evaluation team. That experience

> was

> > terrible, not going there anymore either. They were just the opposite of

> > the first one. So, I asked to go to the Mayo Clinic. I am from Minnesota,

> > and the Mayo Clinic is next to God up there. I knew I could trust them.

> It

> > was a better experience, caring people but they really couldn't tell me

> much

> > either except that I wouldn't qualify for a transplant here in AZ, at

> that

> > time because of my other medical conditions, and now you can add my age,

> > 66.

> >

> > Can I say something about faith. It isn't something you learn to have, it

> > is a decision, a commitment, so doesn't matter how much knowledge you

> have

> > to start. If you were to make a commitment, then you would probably have

> > the urge to know more. Like Diane, there is no way I could get through my

> > life without knowing that God is there all the time. With his help, I can

> > get through three potentially fatal illnesses and a number of bothersome

> or

> > besky problems. And I can enjoy my life. Jan H

> >

> > On Sun, Sep 13, 2009 at 4:57 PM, dave dodds <daveliltoe@ yahoo. com>

> wrote:

> >

> > > Diane, thanks for the moral support, and for praying for me. I guess

> you

> > > could say, Lord knows I need it. What you were saying about my grandson

> is

> > > very true. His Grandmother, my X, is very sick also. He could easily

> lose

> > > out on knowing either of us well. He just turned two. My circumstances

> are

> > > so much better than some that it annoys me I get on so much self-pity.

> I

> > > could, when time comes, look into hospice. I think hospice is for the

> last

> > > 6 months. I may be wrong, though. I don't know how far away I am from

> > > needing a transplant yet. Several doc's gave me 5 yrs. a little less

> than 4

> > > yrs. ago. My liver doc would not give me a length, saying he does nor

> > > forecast the future. I appreciated him for that answer, and the others

> for

> > > their honesty. As they say be careful what you ask. I kind of wish now,

> > > when I asked, the other's would not have told me. I am sure they were

> going

> > > by percentage's giving my symptoms. If they

> > > were correct I am about 16 months away. As I have often thought, since

> > > their prediction, very few really know how long they have or how they

> will

> > > go. Dave

> > >

> > >

> > >

> > >

> > > ____________ _________ _________ __

> > > From: diane chandler <dianechandler@ att.net>

> > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > Sent: Sunday, September 13, 2009 6:23:35 PM

> > > Subject: Re: (unknown)

> > >

> > >

> > > Dave, you have in no way offended me. To say that have faith, without

> > > question, is certainly far from reality. I have come to a place in my

> life

> > > where I rarely allow myself to question God; that has not always been

> so. I

> > > struggled with my faith for many, many years through some terribly

> difficult

> > > circumstances. I hope I won't offend you by saying I will pray for you

> and

> > > ask you not to give up on God. He hasn't given up on you.

> > >

> > > That being said, I do honestly care about you and about what you are

> going

> > > through. Cirrhosis is hard, just plain HARD. Every day is a journey

> into

> > > the unknown and leads us down paths we never dreamed we would have to

> walk.

> > > Uncertainly and depression are familiar friends. I do so hope your

> doctor

> > > can help you with the edema. BTW, I just wanted to add that you should

> give

> > > serious consideration to that transplant. Whether you do it or not,

> give it

> > > every chance when deciding. You have a beautiful grandson who would so

> > > desperately miss his Grandpa, and I'd be willing to bet your daughter

> would

> > > sure miss you too! Sometimes, bad things happen to good people so they

> can

> > > reacess their lives and make fresh starts.

> > >

> > > I'm praying for you Dave!

> > >

> > >

> > > Warm Hugs........ ...

> > >

> > > Di

> > > http://auntdisexper imentallife. blogspot. com/

> > >

> > > ____________ _________ _________ __

> > > From: dave dodds <daveliltoe@ yahoo. com>

> > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > Sent: Sunday, September 13, 2009 6:13:15 PM

> > > Subject: Re: (unknown)

> > >

> > >

> > > Diane, this is one of my biggest problems. I do not have a strong

> belief

> > > in the here after, religion, etc. I do not want to offend those that

> do. I

> > > wish I did, but I don't. I see how much it helps people, but I have not

> > > been able to grasp the concept. I come from a family that both parents

> were

> > > strong believers and they took me to church regularly. I don't know why

> I

> > > have had such a hard time with faith. I am not of the belief that the

> world

> > > happened in a vacuum. There is a degree of spirituality in me. I'm sure

> > > you don't want me to go into the usual talk of why bad things happen to

> good

> > > people and good things happen to bad people. I just am unable to square

> the

> > > suffering people endure with the idea of God having his hand on the

> > > throttle, so to speak. I hope I have not offended you or anyone. I

> admire

> > > your ability to believe without question. I know there is a force of

> good

> > > in the universe, and certainly a evil in the

> > > universe. I know it would help me if I had your faith, but it avoids me

> or

> > > I avoid it. Whichever way it is, the outcome for me is the same, lack

> of

> > > faith for which I, in the end, pay the price.

> > > Dave

> > >

> > > ____________ _________ _________ __

> > > From: diane chandler <dianechandler@ att.net>

> > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > Sent: Sunday, September 13, 2009 5:28:49 PM

> > > Subject: Re: (unknown)

> > >

> > >

> > > Hi Dave,

> > >

> > > No, Terry opted not to try for a transplant. He had been at death's

> door a

> > > couple of times prior to even knowing about his liver disease. He felt

> much

> > > more peaceful about death than dealing with life after a transplant.

> Also,

> > > he had a genetic disorder that predisposed him to liver disease. He

> thought

> > > it would be selfish of him to ask for a donor liver, knowing his body

> would

> > > begin attacking it as soon as it was transplanted, when so few are

> > > available. It was so hard to sit by and watch him make that decision,

> but I

> > > had watched Momma die of renal failure and had seen all she had gone

> through

> > > with the dialysis and didn't want to emotionally force anything on

> Terry

> > > that he wasn't ready to deal with. I told him I would support him fully

> in

> > > whatever decision he made; if he chose to go for the transplant, I

> would be

> > > there every step of the way but if not, I would also help him live his

> life

> > > to the fullest until the time came for him to go home

> > > with the Lord. As hard as it was to give him up, I did so knowing I had

> > > done for him what his heart desired and loved him completely until

> Jesus

> > > came for him.

> > >

> > > Now that I have cirrhosis as well, I am much in the same boat as

> > > you. Terry and I had three children who never made it to this world. I

> > > have two sisters and a niece and four nephews who love me dearly.

> However,

> > > I am not comfortable asking them to take on the role of my caregiver as

> this

> > > disease progresses. I know how hard that is on the loved one and I

> don't

> > > want them to have to go through that. I have already started checking

> in to

> > > in-patient hospice care for when that time comes. Whether I will

> consider a

> > > transplant or not is something I haven't really even thought about yet.

> I

> > > pray about it and just ask the Lord to help me make the right decision

> when

> > > the time comes.

> > >

> > > Whatever decision you make, please know that I am praying for you. I do

> > > not look forward to dealing with this disease, but I also don't allow

> myself

> > > to worry about it. I simply leave it with the Lord and know He already

> has

> > > a plan and all I have to do is submit myself to His will and plan for

> my

> > > life. My faith carries me through this, just as it has through so many

> > > other areas of my life.

> > >

> > > Warm Hugs........ ...

> > >

> > > Di

> > > http://auntdisexper imentallife. blogspot. com/

> > >

> > > ____________ _________ _________ __

> > > From: dave dodds <daveliltoe@ yahoo. com>

> > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > Sent: Sunday, September 13, 2009 5:05:45 PM

> > > Subject: Re: (unknown)

> > >

> > >

> > > Thanks for writing back Diane..And I am sorry you had to go through

> this

> > > with your husband...I know from dealing with close friends and family

> how

> > > difficult a progressive fatal disease is on the caregiver and others

> > > close..if I may ask, did your husband have a transplant? I am wrestling

> > > with that decision when it comes, and whether to put myself and family

> > > through that. I don't really have someone I can move in with during the

> > > recovery process, and would not put that burden on my daughter and her

> > > significant other. For one there is not room in her house, except a

> > > finished basement, and I don't see how someone could negotiate the

> stairs in

> > > that condition. For another reason her relationship is fragile I

> believe,

> > > and that would certainly not help, and though we are civil, we really

> don't

> > > care a lot for each other. I know some go into medical centers to

> > > recuperate and I'm fine with that option, since likely the progression

> > > either way will put

> > > me into one, but I still have a lot of soul searching to do about a

> > > transplant. Dave

> > >

> > > ____________ _________ _________ __

> > > From: diane chandler <dianechandler@ att.net>

> > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > Sent: Sunday, September 13, 2009 4:42:49 PM

> > > Subject: Re: (unknown)

> > >

> > >

> > > Dave, I am so sorry. Dealing with this disease wears so quickly on your

> > > nerves and makes you so sad, so often. Please know I am praying for

> you.

> > > Do make that call to your doctor tomorrow morning, especially since

> this is

> > > your first experience with the swelling in your extremities. Terry, my

> late

> > > husband, used to swell so badly in his feet that he couldn't walk

> because

> > > his feet would actually be rounded on the bottom and wouldn't flaten

> out,

> > > even when he was fully weight-bearing. I cannot say I know what you are

> > > going through from my personal experience, but I do know from having

> been

> > > with Terry as he went through it. It is agonizing for you and for those

> who

> > > love you. Again, I am so sorry that this has infringed upon your

> weekend

> > > with your daughter and grandson. Please update us after you speak with

> your

> > > doctor. My prayers are with you.

> > >

> > > Warm Hugs........ ...

> > >

> > > Di

> > > http://auntdisexper imentallife. blogspot. com/

> > >

> > > ____________ _________ _________ __

> > > From: dave dodds <daveliltoe@ yahoo. com>

> > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > Sent: Sunday, September 13, 2009 11:59:08 AM

> > > Subject: (unknown)

> > >

> > >

> > > I'm sorry I only seem to come here when things are bad, but seems they

> are

> > > mostly that way now...what has always been a great weekend when my

> daughter

> > > and grandson come up was full of agony for most of my visit...my legs,

> feet,

> > > and ankles swelled up so bad I could hardly walk, and my feet hurt very

> > > bad...finally this noon the swelling has mostly gone down..but I wonder

> for

> > > how long? I should call my doc tomorrow, but I get weary of

> doc's...this is

> > > a first in my journey of my feet and ankles swelling like this...I

> thought

> > > the ascites was bad, but that is more horrific..walking is terrible and

> just

> > > laying with my feet up to try and make the pain go away...and knowing

> things

> > > will, only progress into being worse...

> > > Dave

> > >

> > >

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Barby, I am so praying you will not have to face that for many years to come! 

I'm not strong, sweetie; but I do know THE STRONG ONE and it is HE who holds me

up!

 

Warm Hugs...........

 

Di

http://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

Sent: Monday, September 14, 2009 8:06:23 PM

Subject: Re: (unknown)

 

i hear ya girl, i dont think i could ever love again after bobby glenn, it would

be wierd like he was up the watching me be naughty lol. i dont know what i am

gonna do when it all ends, i admire your strenghth!!! love you

>

> From: dave dodds <daveliltoe@ yahoo. com>

> Subject: Re: (unknown)

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Date: Sunday, September 13, 2009, 7:57 PM

>

>  

>

> Diane, thanks for the moral support, and for praying for me.  I guess you

could say, Lord knows I need it.  What you were saying about my grandson is very

true.  His Grandmother, my X, is very sick also.  He could easily lose out on

knowing either of us well.  He just turned two.  My circumstances are so much

better than some that it annoys me I get on so much self-pity.  I could, when

time comes, look into hospice.  I think hospice is for the last 6 months.  I may

be wrong, though.  I don't know how far away I am from needing a transplant

yet.  Several doc's gave me 5 yrs. a little less than 4 yrs. ago.  My liver doc

would not give me a length, saying he does nor forecast the future.  I

appreciated him for that answer, and the others for their honesty.  As they say

be careful what you ask.  I kind of wish now, when I asked, the other's would

not have told me.  I am sure they were going by percentage's giving my

symptoms.  If they

> were correct I am about 16 months away.  As I have often thought, since their

prediction, very few really know how long they have or how they will go.   Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 6:23:35 PM

> Subject: Re: (unknown)

>

>  

> Dave, you have in no way offended me.  To say that have faith, without

question, is certainly far from reality.  I have come to a place in my life

where I rarely allow myself to question God; that has not always been so...  I

struggled with my faith for many, many years through some terribly difficult

circumstances.  I hope I won't offend you by saying I will pray for you and ask

you not to give up on God.  He hasn't given up on you. 

>

> That being said, I do honestly care about you and about what you are going

through.  Cirrhosis is hard, just plain HARD.  Every day is a journey into the

unknown and leads us down paths we never dreamed we would have to walk. 

Uncertainly and depression are familiar friends.  I do so hope your doctor can

help you with the edema.  BTW, I just wanted to add that you should give serious

consideration to that transplant.  Whether you do it or not, give it every

chance when deciding.  You have a beautiful grandson who would so desperately

miss his Grandpa, and I'd be willing to bet your daughter would sure miss you

too!  Sometimes, bad things happen to good people so they can reacess their

lives and make fresh starts. 

>

> I'm praying for you Dave!

>

>  

> Warm Hugs........ ...

>  

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 6:13:15 PM

> Subject: Re: (unknown)

>

>  

> Diane, this is one of my biggest problems.  I do not have a strong belief in

the here after, religion, etc.  I do not want to offend those that do.  I wish I

did, but I don't.  I see how much it helps people, but I have not been able to

grasp the concept.  I come from a family that both parents were strong believers

and they took me to church regularly.  I don't know why I have had such a hard

time with faith.  I am not of the belief that the world happened in a vacuum. 

There is a degree of spirituality in me.  I'm sure you don't want me to go into

the usual talk of why bad things happen to good people and good things happen to

bad people...  I just am unable to square the suffering people endure with the

idea of God having his hand on the throttle, so to speak.  I hope I have not

offended you or anyone.  I admire your ability to believe without question.  I

know there is a force of good in the universe, and certainly a evil in

the

> universe.  I know it would help me if I had your faith, but it avoids me or I

avoid it.  Whichever way it is, the outcome for me is the same, lack of faith

for which I, in the end, pay the price.     

>  Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 5:28:49 PM

> Subject: Re: (unknown)

>

>  

> Hi Dave,

>

> No, Terry opted not to try for a transplant.  He had been at death's door a

couple of times prior to even knowing about his liver disease.  He felt much

more peaceful about death than dealing with life after a transplant.  Also, he

had a genetic disorder that predisposed him to liver disease.  He thought it

would be selfish of him to ask for a donor liver, knowing his body would begin

attacking it as soon as it was transplanted, when so few are available.  It was

so hard to sit by and watch him make that decision, but I had watched Momma die

of renal failure and had seen all she had gone through with the dialysis and

didn't want to emotionally force anything on Terry that he wasn't ready to deal

with.  I told him I would support him fully in whatever decision he made; if he

chose to go for the transplant, I would be there every step of the way but if

not, I would also help him live his life to the fullest until the time came for

him to go home

> with the Lord.  As hard as it was to give him up, I did so knowing I had done

for him what his heart desired and loved him completely until Jesus came for

him.

>

> Now that I have cirrhosis as well, I am much in the same boat as you.  Terry

and I had three children who never made it to this world.  I have two sisters

and a niece and four nephews who love me dearly.  However, I am not comfortable

asking them to take on the role of my caregiver as this disease progresses.  I

know how hard that is on the loved one and I don't want them to have to go

through that.  I have already started checking in to in-patient hospice care for

when that time comes.  Whether I will consider a transplant or not is something

I haven't really even thought about yet.  I pray about it and just ask the Lord

to help me make the right decision when the time comes.

>

> Whatever decision you make, please know that I am praying for you.  I do not

look forward to dealing with this disease, but I also don't allow myself to

worry about it.  I simply leave it with the Lord and know He already has a plan

and all I have to do is submit myself to His will and plan for my life.  My

faith carries me through this, just as it has through so many other areas of my

life.

>  

> Warm Hugs........ ...

>  

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 5:05:45 PM

> Subject: Re: (unknown)

>

>  

> Thanks for writing back Diane..And I am sorry you had to go through this with

your husband...I know from dealing with close friends and family how difficult a

progressive fatal disease is on the caregiver and others close..if I may ask,

did your husband have a transplant?  I am wrestling with that decision when it

comes, and whether to put myself and family through that.  I don't really have

someone I can move in with during the recovery process, and would not put that

burden on my daughter and her significant other.  For one there is not room in

her house, except a finished basement, and I don't see how someone could

negotiate the stairs in that condition.  For another reason her relationship is

fragile I believe, and that would certainly not help, and though we are civil,

we really don't care a lot for each other.  I know some go into medical centers

to recuperate and I'm fine with that option, since likely the progression either

way will put

> me into one, but I still have a lot of soul searching to do about a

transplant.     Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 4:42:49 PM

> Subject: Re: (unknown)

>

>  

> Dave, I am so sorry.  Dealing with this disease wears so quickly on your

nerves and makes you so sad, so often.  Please know I am praying for you.  Do

make that call to your doctor tomorrow morning, especially since this is your

first experience with the swelling in your extremities.  Terry, my late husband,

used to swell so badly in his feet that he couldn't walk because his feet would

actually be rounded on the bottom and wouldn't flaten out, even when he was

fully weight-bearing.  I cannot say I know what you are going through from my

personal experience, but I do know from having been with Terry as he went

through it.  It is agonizing for you and for those who love you.  Again, I am so

sorry that this has infringed upon your weekend with your daughter and

grandson.  Please update us after you speak with your doctor.  My prayers are

with you.

>  

> Warm Hugs........ ...

>  

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 11:59:08 AM

> Subject: (unknown)

>

>  

> I'm sorry I only seem to come here when things are bad, but seems they are

mostly that way now...what has always been a great weekend when my daughter and

grandson come up was full of agony for most of my visit...my legs, feet, and

ankles swelled up so bad I could hardly walk, and my feet hurt very

bad...finally this noon the swelling has mostly gone down..but I wonder for how

long?  I should call my doc tomorrow, but I get weary of doc's...this is a first

in my journey of my feet and ankles swelling like this...I thought the ascites

was bad, but that is more horrific..walking is terrible and just laying with my

feet up to try and make the pain go away...and knowing things will, only

progress into being worse... 

>  Dave

>

>

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Guest guest

I too abhor the being alone, but I cannot face the thought of being with anyone

else in a relationship at this point either.  It's a Catch 22 that leaves us

hurting with only one place to turn for real comfort and that is the Lord.

 

Warm Hugs...........

 

Di

http://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

Sent: Monday, September 14, 2009 8:12:51 PM

Subject: Re: (unknown)

 

Di,

 

I am so so tired of being alone but more scared to have a bad relationship;

Thanks be to God for he creates our tomorrows Love, Lyncia

 

 

From: dave dodds <daveliltoe@ yahoo. com>

Subject: Re: (unknown)

To: livercirrhosissuppo rtyahoogroups (DOT) com

Date: Sunday, September 13, 2009, 7:57 PM

 

Diane, thanks for the moral support, and for praying for me.  I guess you could

say, Lord knows I need it.  What you were saying about my grandson is very

true.  His Grandmother, my X, is very sick also.  He could easily lose out on

knowing either of us well.  He just turned two.  My circumstances are so much

better than some that it annoys me I get on so much self-pity.  I could, when

time comes, look into hospice.  I think hospice is for the last 6 months.  I may

be wrong, though.  I don't know how far away I am from needing a transplant

yet.  Several doc's gave me 5 yrs. a little less than 4 yrs. ago.  My liver doc

would not give me a length, saying he does nor forecast the future.  I

appreciated him for that answer, and the others for their honesty.  As they say

be careful what you ask.  I kind of wish now, when I asked, the other's would

not have told me.  I am sure they were going by percentage's giving my

symptoms.  If they

were correct I am about 16 months away.  As I have often thought, since their

prediction, very few really know how long they have or how they will go.   Dave

____________ _________ _________ __

From: diane chandler <dianechandler@ att.net>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 6:23:35 PM

Subject: Re: (unknown)

 

Dave, you have in no way offended me.  To say that have faith, without

question, is certainly far from reality.  I have come to a place in my life

where I rarely allow myself to question God; that has not always been so...  I

struggled with my faith for many, many years through some terribly difficult

circumstances.  I hope I won't offend you by saying I will pray for you and ask

you not to give up on God.  He hasn't given up on you. 

That being said, I do honestly care about you and about what you are going

through.  Cirrhosis is hard, just plain HARD.  Every day is a journey into the

unknown and leads us down paths we never dreamed we would have to walk. 

Uncertainly and depression are familiar friends.  I do so hope your doctor can

help you with the edema.  BTW, I just wanted to add that you should give serious

consideration to that transplant.  Whether you do it or not, give it every

chance when deciding.  You have a beautiful grandson who would so desperately

miss his Grandpa, and I'd be willing to bet your daughter would sure miss you

too!  Sometimes, bad things happen to good people so they can reacess their

lives and make fresh starts. 

I'm praying for you Dave!

 

Warm Hugs........ ...

 

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: dave dodds <daveliltoe@ yahoo. com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 6:13:15 PM

Subject: Re: (unknown)

 

Diane, this is one of my biggest problems.  I do not have a strong belief in the

here after, religion, etc.  I do not want to offend those that do.  I wish I

did, but I don't.  I see how much it helps people, but I have not been able to

grasp the concept.  I come from a family that both parents were strong believers

and they took me to church regularly.  I don't know why I have had such a hard

time with faith.  I am not of the belief that the world happened in a vacuum. 

There is a degree of spirituality in me.  I'm sure you don't want me to go into

the usual talk of why bad things happen to good people and good things happen to

bad people...  I just am unable to square the suffering people endure with the

idea of God having his hand on the throttle, so to speak.  I hope I have not

offended you or anyone.  I admire your ability to believe without question.  I

know there is a force of good in the universe, and certainly a evil in the

universe.  I know it would help me if I had your faith, but it avoids me or I

avoid it.  Whichever way it is, the outcome for me is the same, lack of faith

for which I, in the end, pay the price.     

 Dave

____________ _________ _________ __

From: diane chandler <dianechandler@ att.net>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 5:28:49 PM

Subject: Re: (unknown)

 

Hi Dave,

No, Terry opted not to try for a transplant.  He had been at death's door a

couple of times prior to even knowing about his liver disease.  He felt much

more peaceful about death than dealing with life after a transplant.  Also, he

had a genetic disorder that predisposed him to liver disease.  He thought it

would be selfish of him to ask for a donor liver, knowing his body would begin

attacking it as soon as it was transplanted, when so few are available.  It was

so hard to sit by and watch him make that decision, but I had watched Momma die

of renal failure and had seen all she had gone through with the dialysis and

didn't want to emotionally force anything on Terry that he wasn't ready to deal

with.  I told him I would support him fully in whatever decision he made; if he

chose to go for the transplant, I would be there every step of the way but if

not, I would also help him live his life to the fullest until the time came for

him to go home

with the Lord.  As hard as it was to give him up, I did so knowing I had done

for him what his heart desired and loved him completely until Jesus came for

him.

Now that I have cirrhosis as well, I am much in the same boat as you.  Terry and

I had three children who never made it to this world.  I have two sisters and a

niece and four nephews who love me dearly.  However, I am not comfortable asking

them to take on the role of my caregiver as this disease progresses.  I know how

hard that is on the loved one and I don't want them to have to go through that. 

I have already started checking in to in-patient hospice care for when that time

comes.  Whether I will consider a transplant or not is something I haven't

really even thought about yet.  I pray about it and just ask the Lord to help me

make the right decision when the time comes.

Whatever decision you make, please know that I am praying for you.  I do not

look forward to dealing with this disease, but I also don't allow myself to

worry about it.  I simply leave it with the Lord and know He already has a plan

and all I have to do is submit myself to His will and plan for my life.  My

faith carries me through this, just as it has through so many other areas of my

life.

 

Warm Hugs........ ...

 

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: dave dodds <daveliltoe@ yahoo. com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 5:05:45 PM

Subject: Re: (unknown)

 

Thanks for writing back Diane..And I am sorry you had to go through this with

your husband...I know from dealing with close friends and family how difficult a

progressive fatal disease is on the caregiver and others close..if I may ask,

did your husband have a transplant?  I am wrestling with that decision when it

comes, and whether to put myself and family through that.  I don't really have

someone I can move in with during the recovery process, and would not put that

burden on my daughter and her significant other.  For one there is not room in

her house, except a finished basement, and I don't see how someone could

negotiate the stairs in that condition.  For another reason her relationship is

fragile I believe, and that would certainly not help, and though we are civil,

we really don't care a lot for each other.  I know some go into medical centers

to recuperate and I'm fine with that option, since likely the progression either

way will put

me into one, but I still have a lot of soul searching to do about a

transplant.     Dave

____________ _________ _________ __

From: diane chandler <dianechandler@ att.net>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 4:42:49 PM

Subject: Re: (unknown)

 

Dave, I am so sorry.  Dealing with this disease wears so quickly on your nerves

and makes you so sad, so often.  Please know I am praying for you.  Do make that

call to your doctor tomorrow morning, especially since this is your first

experience with the swelling in your extremities.  Terry, my late husband, used

to swell so badly in his feet that he couldn't walk because his feet would

actually be rounded on the bottom and wouldn't flaten out, even when he was

fully weight-bearing.  I cannot say I know what you are going through from my

personal experience, but I do know from having been with Terry as he went

through it.  It is agonizing for you and for those who love you.  Again, I am so

sorry that this has infringed upon your weekend with your daughter and

grandson.  Please update us after you speak with your doctor.  My prayers are

with you.

 

Warm Hugs........ ...

 

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: dave dodds <daveliltoe@ yahoo. com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Sunday, September 13, 2009 11:59:08 AM

Subject: (unknown)

 

I'm sorry I only seem to come here when things are bad, but seems they are

mostly that way now...what has always been a great weekend when my daughter and

grandson come up was full of agony for most of my visit...my legs, feet, and

ankles swelled up so bad I could hardly walk, and my feet hurt very

bad...finally this noon the swelling has mostly gone down..but I wonder for how

long?  I should call my doc tomorrow, but I get weary of doc's...this is a first

in my journey of my feet and ankles swelling like this...I thought the ascites

was bad, but that is more horrific..walking is terrible and just laying with my

feet up to try and make the pain go away...and knowing things will, only

progress into being worse... 

 Dave

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My sister mentioned to me today that she is concerned about me because it seems

like I'm confused a lot lately.  I'm a bit concerned about that.  As far as I

know, I don't have any decompensating affects from the cirrhosis.  Could

encephalopathy occur in the absence of other decompensating factors?  I have an

appointment with my PCP on Wednesday and suppose I should tell him what my

sister said, huh?

 

Warm Hugs...........

 

Di

http://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

Sent: Monday, September 14, 2009 9:04:50 PM

Subject: Re: (unknown)

 

it's okay, i knew  who you were talking to!  LOL!!!!

                                       

                                    Love,Jill

 

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

> wow, you don't let cirrhosis occupy your mind much? Tell me how to

> accomplish that?

>

>

>

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 10:10:30 PM

> Subject: Re: (unknown)

>

>

> Yes, Dave, Hospice care is for the end-of-life and is something you

> shouldn't consider until you have made your decision regarding

> transplant. Give it much thought and consideration, both for yourself and

> your grandson.

>

> None of us knows the number of our days. We walk about every day living

> like we think we will live forever; but the truth is that any of us could go

> within the next minute. I don't allow the thought that I have cirrhosis to

> occupy too much of my time. I live my life and try my best to take care of

> myself. When my time comes, it comes; end of story. I'm not a fatalist,

> just a realist.

>

> I am always here if you need a friend or an ear to listen. I can't hide my

> faith, but I won't shove it down your throat either. Good luck with the

> call to your doctor tomorrow!

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 6:57:15 PM

> Subject: Re: (unknown)

>

>

> Diane, thanks for the moral support, and for praying for me. I guess you

> could say, Lord knows I need it. What you were saying about my grandson is

> very true. His Grandmother, my X, is very sick also. He could easily lose

> out on knowing either of us well. He just turned two. My circumstances are

> so much better than some that it annoys me I get on so much self-pity. I

> could, when time comes, look into hospice. I think hospice is for the last

> 6 months. I may be wrong, though. I don't know how far away I am from

> needing a transplant yet. Several doc's gave me 5 yrs. a little less than 4

> yrs. ago. My liver doc would not give me a length, saying he does nor

> forecast the future. I appreciated him for that answer, and the others for

> their honesty. As they say be careful what you ask. I kind of wish now,

> when I asked, the other's would not have told me. I am sure they were going

> by percentage's giving my symptoms. If they

> were correct I am about 16 months away. As I have often thought, since

> their prediction, very few really know how long they have or how they will

> go. Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 6:23:35 PM

> Subject: Re: (unknown)

>

>

> Dave, you have in no way offended me. To say that have faith, without

> question, is certainly far from reality. I have come to a place in my life

> where I rarely allow myself to question God; that has not always been so. I

> struggled with my faith for many, many years through some terribly difficult

> circumstances. I hope I won't offend you by saying I will pray for you and

> ask you not to give up on God. He hasn't given up on you.

>

> That being said, I do honestly care about you and about what you are going

> through. Cirrhosis is hard, just plain HARD. Every day is a journey into

> the unknown and leads us down paths we never dreamed we would have to walk.

> Uncertainly and depression are familiar friends. I do so hope your doctor

> can help you with the edema. BTW, I just wanted to add that you should give

> serious consideration to that transplant. Whether you do it or not, give it

> every chance when deciding. You have a beautiful grandson who would so

> desperately miss his Grandpa, and I'd be willing to bet your daughter would

> sure miss you too! Sometimes, bad things happen to good people so they can

> reacess their lives and make fresh starts.

>

> I'm praying for you Dave!

>

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 6:13:15 PM

> Subject: Re: (unknown)

>

>

> Diane, this is one of my biggest problems. I do not have a strong belief

> in the here after, religion, etc. I do not want to offend those that do. I

> wish I did, but I don't. I see how much it helps people, but I have not

> been able to grasp the concept. I come from a family that both parents were

> strong believers and they took me to church regularly. I don't know why I

> have had such a hard time with faith. I am not of the belief that the world

> happened in a vacuum. There is a degree of spirituality in me. I'm sure

> you don't want me to go into the usual talk of why bad things happen to good

> people and good things happen to bad people. I just am unable to square the

> suffering people endure with the idea of God having his hand on the

> throttle, so to speak. I hope I have not offended you or anyone. I admire

> your ability to believe without question. I know there is a force of good

> in the universe, and certainly a evil in the

> universe. I know it would help me if I had your faith, but it avoids me or

> I avoid it. Whichever way it is, the outcome for me is the same, lack of

> faith for which I, in the end, pay the price.

> Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 5:28:49 PM

> Subject: Re: (unknown)

>

>

> Hi Dave,

>

> No, Terry opted not to try for a transplant. He had been at death's door a

> couple of times prior to even knowing about his liver disease. He felt much

> more peaceful about death than dealing with life after a transplant. Also,

> he had a genetic disorder that predisposed him to liver disease. He thought

> it would be selfish of him to ask for a donor liver, knowing his body would

> begin attacking it as soon as it was transplanted, when so few are

> available. It was so hard to sit by and watch him make that decision, but I

> had watched Momma die of renal failure and had seen all she had gone through

> with the dialysis and didn't want to emotionally force anything on Terry

> that he wasn't ready to deal with. I told him I would support him fully in

> whatever decision he made; if he chose to go for the transplant, I would be

> there every step of the way but if not, I would also help him live his life

> to the fullest until the time came for him to go home

> with the Lord. As hard as it was to give him up, I did so knowing I had

> done for him what his heart desired and loved him completely until Jesus

> came for him.

>

> Now that I have cirrhosis as well, I am much in the same boat as

> you. Terry and I had three children who never made it to this world. I

> have two sisters and a niece and four nephews who love me dearly. However,

> I am not comfortable asking them to take on the role of my caregiver as this

> disease progresses. I know how hard that is on the loved one and I don't

> want them to have to go through that. I have already started checking in to

> in-patient hospice care for when that time comes. Whether I will consider a

> transplant or not is something I haven't really even thought about yet. I

> pray about it and just ask the Lord to help me make the right decision when

> the time comes.

>

> Whatever decision you make, please know that I am praying for you. I do

> not look forward to dealing with this disease, but I also don't allow myself

> to worry about it. I simply leave it with the Lord and know He already has

> a plan and all I have to do is submit myself to His will and plan for my

> life. My faith carries me through this, just as it has through so many

> other areas of my life.

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 5:05:45 PM

> Subject: Re: (unknown)

>

>

> Thanks for writing back Diane..And I am sorry you had to go through this

> with your husband...I know from dealing with close friends and family how

> difficult a progressive fatal disease is on the caregiver and others

> close..if I may ask, did your husband have a transplant? I am wrestling

> with that decision when it comes, and whether to put myself and family

> through that. I don't really have someone I can move in with during the

> recovery process, and would not put that burden on my daughter and her

> significant other. For one there is not room in her house, except a

> finished basement, and I don't see how someone could negotiate the stairs in

> that condition. For another reason her relationship is fragile I believe,

> and that would certainly not help, and though we are civil, we really don't

> care a lot for each other. I know some go into medical centers to

> recuperate and I'm fine with that option, since likely the progression

> either way will put

> me into one, but I still have a lot of soul searching to do about a

> transplant. Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 4:42:49 PM

> Subject: Re: (unknown)

>

>

> Dave, I am so sorry. Dealing with this disease wears so quickly on your

> nerves and makes you so sad, so often. Please know I am praying for you.

> Do make that call to your doctor tomorrow morning, especially since this is

> your first experience with the swelling in your extremities. Terry, my late

> husband, used to swell so badly in his feet that he couldn't walk because

> his feet would actually be rounded on the bottom and wouldn't flaten out,

> even when he was fully weight-bearing. I cannot say I know what you are

> going through from my personal experience, but I do know from having been

> with Terry as he went through it. It is agonizing for you and for those who

> love you. Again, I am so sorry that this has infringed upon your weekend

> with your daughter and grandson. Please update us after you speak with your

> doctor. My prayers are with you.

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 11:59:08 AM

> Subject: (unknown)

>

>

> I'm sorry I only seem to come here when things are bad, but seems they are

> mostly that way now...what has always been a great weekend when my daughter

> and grandson come up was full of agony for most of my visit...my legs, feet,

> and ankles swelled up so bad I could hardly walk, and my feet hurt very

> bad...finally this noon the swelling has mostly gone down..but I wonder for

> how long? I should call my doc tomorrow, but I get weary of doc's...this is

> a first in my journey of my feet and ankles swelling like this...I thought

> the ascites was bad, but that is more horrific..walking is terrible and just

> laying with my feet up to try and make the pain go away...and knowing things

> will, only progress into being worse...

> Dave

>

>

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Guest guest

I don't worry at all about whether Terry would be 'watching' me or not.  He told

me before he went home to find someone to love me and take care of me.  I just

don't want to do that, at least not at this point.  It has nothing to do with

anyone except me.  The only man I ever wanted to share my life with is with the

Lord now.  I simply don't want anyone else...PERIOD.

 

Warm Hugs...........

 

Di

http://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

Sent: Monday, September 14, 2009 9:45:20 PM

Subject: Re: (unknown)

 

I think the thing with this disease is that it leaves you so tired, having

to put out all that energy on building a relationship is just too much to

even think about even if you aren't that close to losing your loved one. I

can't imagine having to try to please someone, and unless you find the

perfect person, it can be very stressful and frustrating. There is that

naughty thing too. Just think of all the people up there who might be

watching. lol Jan H

On Mon, Sep 14, 2009 at 6:12 PM, Lyncia <lmlangdonyahoo (DOT) com> wrote:

> Di,

>

> I am so so tired of being alone but more scared to have a bad relationship;

>

>

>

> Thanks be to God for he creates our tomorrows Love, Lyncia

>

>

>

>

>

> From: dave dodds <daveliltoe@ yahoo. com>

> Subject: Re: (unknown)

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Date: Sunday, September 13, 2009, 7:57 PM

>

>

>

> Diane, thanks for the moral support, and for praying for me. I guess you

> could say, Lord knows I need it. What you were saying about my grandson is

> very true. His Grandmother, my X, is very sick also. He could easily lose

> out on knowing either of us well. He just turned two. My circumstances are

> so much better than some that it annoys me I get on so much self-pity. I

> could, when time comes, look into hospice. I think hospice is for the last

> 6 months. I may be wrong, though. I don't know how far away I am from

> needing a transplant yet. Several doc's gave me 5 yrs. a little less than 4

> yrs. ago. My liver doc would not give me a length, saying he does nor

> forecast the future. I appreciated him for that answer, and the others for

> their honesty. As they say be careful what you ask. I kind of wish now,

> when I asked, the other's would not have told me. I am sure they were going

> by percentage's giving my symptoms. If they

> were correct I am about 16 months away. As I have often thought, since

> their prediction, very few really know how long they have or how they will

> go. Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 6:23:35 PM

> Subject: Re: (unknown)

>

>

> Dave, you have in no way offended me. To say that have faith, without

> question, is certainly far from reality. I have come to a place in my life

> where I rarely allow myself to question God; that has not always been so...

> I struggled with my faith for many, many years through some terribly

> difficult circumstances. I hope I won't offend you by saying I will pray

> for you and ask you not to give up on God. He hasn't given up on you.

>

> That being said, I do honestly care about you and about what you are going

> through. Cirrhosis is hard, just plain HARD. Every day is a journey into

> the unknown and leads us down paths we never dreamed we would have to walk.

> Uncertainly and depression are familiar friends. I do so hope your doctor

> can help you with the edema. BTW, I just wanted to add that you should give

> serious consideration to that transplant. Whether you do it or not, give it

> every chance when deciding. You have a beautiful grandson who would so

> desperately miss his Grandpa, and I'd be willing to bet your daughter would

> sure miss you too! Sometimes, bad things happen to good people so they can

> reacess their lives and make fresh starts.

>

> I'm praying for you Dave!

>

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 6:13:15 PM

> Subject: Re: (unknown)

>

>

> Diane, this is one of my biggest problems. I do not have a strong belief

> in the here after, religion, etc. I do not want to offend those that do. I

> wish I did, but I don't. I see how much it helps people, but I have not

> been able to grasp the concept. I come from a family that both parents were

> strong believers and they took me to church regularly. I don't know why I

> have had such a hard time with faith. I am not of the belief that the world

> happened in a vacuum. There is a degree of spirituality in me. I'm sure

> you don't want me to go into the usual talk of why bad things happen to good

> people and good things happen to bad people... I just am unable to square

> the suffering people endure with the idea of God having his hand on the

> throttle, so to speak. I hope I have not offended you or anyone. I admire

> your ability to believe without question. I know there is a force of good

> in the universe, and certainly a evil in the

> universe. I know it would help me if I had your faith, but it avoids me or

> I avoid it. Whichever way it is, the outcome for me is the same, lack of

> faith for which I, in the end, pay the price.

> Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 5:28:49 PM

> Subject: Re: (unknown)

>

>

> Hi Dave,

>

> No, Terry opted not to try for a transplant. He had been at death's door a

> couple of times prior to even knowing about his liver disease. He felt much

> more peaceful about death than dealing with life after a transplant. Also,

> he had a genetic disorder that predisposed him to liver disease. He thought

> it would be selfish of him to ask for a donor liver, knowing his body would

> begin attacking it as soon as it was transplanted, when so few are

> available. It was so hard to sit by and watch him make that decision, but I

> had watched Momma die of renal failure and had seen all she had gone through

> with the dialysis and didn't want to emotionally force anything on Terry

> that he wasn't ready to deal with. I told him I would support him fully in

> whatever decision he made; if he chose to go for the transplant, I would be

> there every step of the way but if not, I would also help him live his life

> to the fullest until the time came for him to go home

> with the Lord. As hard as it was to give him up, I did so knowing I had

> done for him what his heart desired and loved him completely until Jesus

> came for him.

>

> Now that I have cirrhosis as well, I am much in the same boat as

> you. Terry and I had three children who never made it to this world. I

> have two sisters and a niece and four nephews who love me dearly. However,

> I am not comfortable asking them to take on the role of my caregiver as this

> disease progresses. I know how hard that is on the loved one and I don't

> want them to have to go through that. I have already started checking in to

> in-patient hospice care for when that time comes. Whether I will consider a

> transplant or not is something I haven't really even thought about yet. I

> pray about it and just ask the Lord to help me make the right decision when

> the time comes.

>

> Whatever decision you make, please know that I am praying for you. I do

> not look forward to dealing with this disease, but I also don't allow myself

> to worry about it. I simply leave it with the Lord and know He already has

> a plan and all I have to do is submit myself to His will and plan for my

> life. My faith carries me through this, just as it has through so many

> other areas of my life.

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 5:05:45 PM

> Subject: Re: (unknown)

>

>

> Thanks for writing back Diane..And I am sorry you had to go through this

> with your husband...I know from dealing with close friends and family how

> difficult a progressive fatal disease is on the caregiver and others

> close..if I may ask, did your husband have a transplant? I am wrestling

> with that decision when it comes, and whether to put myself and family

> through that. I don't really have someone I can move in with during the

> recovery process, and would not put that burden on my daughter and her

> significant other. For one there is not room in her house, except a

> finished basement, and I don't see how someone could negotiate the stairs in

> that condition. For another reason her relationship is fragile I believe,

> and that would certainly not help, and though we are civil, we really don't

> care a lot for each other. I know some go into medical centers to

> recuperate and I'm fine with that option, since likely the progression

> either way will put

> me into one, but I still have a lot of soul searching to do about a

> transplant. Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 4:42:49 PM

> Subject: Re: (unknown)

>

>

> Dave, I am so sorry. Dealing with this disease wears so quickly on your

> nerves and makes you so sad, so often. Please know I am praying for you.

> Do make that call to your doctor tomorrow morning, especially since this is

> your first experience with the swelling in your extremities. Terry, my late

> husband, used to swell so badly in his feet that he couldn't walk because

> his feet would actually be rounded on the bottom and wouldn't flaten out,

> even when he was fully weight-bearing. I cannot say I know what you are

> going through from my personal experience, but I do know from having been

> with Terry as he went through it. It is agonizing for you and for those who

> love you. Again, I am so sorry that this has infringed upon your weekend

> with your daughter and grandson. Please update us after you speak with your

> doctor. My prayers are with you.

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 11:59:08 AM

> Subject: (unknown)

>

>

> I'm sorry I only seem to come here when things are bad, but seems they are

> mostly that way now...what has always been a great weekend when my daughter

> and grandson come up was full of agony for most of my visit...my legs, feet,

> and ankles swelled up so bad I could hardly walk, and my feet hurt very

> bad...finally this noon the swelling has mostly gone down..but I wonder for

> how long? I should call my doc tomorrow, but I get weary of doc's...this is

> a first in my journey of my feet and ankles swelling like this...I thought

> the ascites was bad, but that is more horrific..walking is terrible and just

> laying with my feet up to try and make the pain go away...and knowing things

> will, only progress into being worse...

> Dave

>

>

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haha-I enjoyed it-we are all overwhelmed most of the time!

________________________________

To: livercirrhosissupport

Sent: Monday, September 14, 2009 4:26:20 PM

Subject: Re: (unknown)

 

Phyllis, I am SO sorry!  I keep calling Phil the wrong name!  My mind is a mess

and I so apologize!  I suppose I must have had Jill's husband on my mind because

I have been exchanging emails with her as well.  Jill, I apologize to you as

well!  I may not know who I'm talking about, but the Lord does and I'm praying

for you all!

 

Warm Hugs........ ...

 

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: Phyllis Delgado <pdelgado354@ yahoo.com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Monday, September 14, 2009 7:01:19 PM

Subject: Re: (unknown)

 

Phil & I thank you.

Yes, one day at a time.

____________ _________ _________ __

From: diane chandler <dianechandler@ att.net>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Monday, September 14, 2009 2:35:19 PM

Subject: Re: (unknown)

 

Terry never had to deal with excess iron, so never dealt with these treatments. 

I know this does put an entirely new face on dealing with the disease.  The

other things you mentioned, we did deal with on a progressively worse basis as

time went by.  We just dealt with whatever was happening at the moment and then

moved on until the next hurdle presented itself.  I am praying for you and Ed. 

I know it is hard and the days and nights are long.

 

Warm Hugs........ ...

 

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: Phyllis Delgado <pdelgado354@ yahoo.com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Monday, September 14, 2009 4:52:38 PM

Subject: Re: (unknown)

 

Thx Jan

I try to not let it occupy our lives but it is there, every day, reminding us of

our limitations.

My husband is currently on a 12 hr home infusion of deferoxamine( remove excess

iron) which I have to administer every other day.  This is his sixth treatment

and every day we encounter new issues, an infection on one of the injection

sites. confusion, vision problems,vomiting, sleeps constanly, can't eat (tho his

stomach is growling) etc, etc....One day he took medication and didn't know what

he took, he came into the room with white powder residue on his mouth, I had to

induce vomiting.  I am awaiting a call back from Dr's office,we are not going to

continue on ths course of treatment, he is worst instead of better.  When he

doesn't take the treatment he is back to normal eating, coherent, playing with

dog, normal BP etc..

He flooded bathroom yesterday, as he didn't know how to turn off faucet. Trying

times, the mind is scrambled, unable to turn off this madness. 

Phyllis

 

____________ _________ _________ __

From: Jan Holman <janholmangmail (DOT) com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Monday, September 14, 2009 11:40:31 AM

Subject: Re: (unknown)

Phylllis - I know you asked the question of Diane, but I feel much the same

way. Of course, I never forget that I have it, but it isn't the topmost

thing on my mind. Some of the side effects are on my mind every day, the

lack of energy, having to ration it to do what I want to do including

reading all these emails and the emails from other sources. But, I think

it is the acceptance of my medical problems, finding new ways of doing

things that don't require so much energy, spacing activities, staying as

active as possible. And my faith makes it so much easier to not become

cirrhosis, cad, pad, kidney disease, peripheral neuropathy, hypothyroid

disease, I haven't even bothered to find out what effects hasimotos disease

has on me. I am not my medical problems. I am a child of God with a job to

do here on earth. The most troublesome problem on a daily basis, and

comparitively rather minor, is osteo arthritis. It keeps reminding you with

pain. But when you know God is with you, that is so much more important

than how you might leave this world, or what will happen to you while you

are here. Now when I had an abcessed tooth that really flared up after my

last angioplasty, hurt from the top of my head down the side of my neck,

that was hard to keep out of my mind,[?] but I still continued to do as much

as possible. Jan H

On Mon, Sep 14, 2009 at 11:53 AM, Phyllis Delgado <pdelgado354@ yahoo.com>wrote:

> wow, you don't let cirrhosis occupy your mind much? Tell me how to

> accomplish that?

>

>

>

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 10:10:30 PM

> Subject: Re: (unknown)

>

>

> Yes, Dave, Hospice care is for the end-of-life and is something you

> shouldn't consider until you have made your decision regarding

> transplant. Give it much thought and consideration, both for yourself and

> your grandson.

>

> None of us knows the number of our days. We walk about every day living

> like we think we will live forever; but the truth is that any of us could go

> within the next minute. I don't allow the thought that I have cirrhosis to

> occupy too much of my time. I live my life and try my best to take care of

> myself. When my time comes, it comes; end of story. I'm not a fatalist,

> just a realist.

>

> I am always here if you need a friend or an ear to listen. I can't hide my

> faith, but I won't shove it down your throat either. Good luck with the

> call to your doctor tomorrow!

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 6:57:15 PM

> Subject: Re: (unknown)

>

>

> Diane, thanks for the moral support, and for praying for me. I guess you

> could say, Lord knows I need it. What you were saying about my grandson is

> very true. His Grandmother, my X, is very sick also. He could easily lose

> out on knowing either of us well. He just turned two. My circumstances are

> so much better than some that it annoys me I get on so much self-pity. I

> could, when time comes, look into hospice. I think hospice is for the last

> 6 months. I may be wrong, though. I don't know how far away I am from

> needing a transplant yet. Several doc's gave me 5 yrs. a little less than 4

> yrs. ago. My liver doc would not give me a length, saying he does nor

> forecast the future. I appreciated him for that answer, and the others for

> their honesty. As they say be careful what you ask. I kind of wish now,

> when I asked, the other's would not have told me. I am sure they were going

> by percentage's giving my symptoms. If they

> were correct I am about 16 months away. As I have often thought, since

> their prediction, very few really know how long they have or how they will

> go. Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 6:23:35 PM

> Subject: Re: (unknown)

>

>

> Dave, you have in no way offended me. To say that have faith, without

> question, is certainly far from reality. I have come to a place in my life

> where I rarely allow myself to question God; that has not always been so. I

> struggled with my faith for many, many years through some terribly difficult

> circumstances. I hope I won't offend you by saying I will pray for you and

> ask you not to give up on God. He hasn't given up on you.

>

> That being said, I do honestly care about you and about what you are going

> through. Cirrhosis is hard, just plain HARD. Every day is a journey into

> the unknown and leads us down paths we never dreamed we would have to walk.

> Uncertainly and depression are familiar friends. I do so hope your doctor

> can help you with the edema. BTW, I just wanted to add that you should give

> serious consideration to that transplant. Whether you do it or not, give it

> every chance when deciding. You have a beautiful grandson who would so

> desperately miss his Grandpa, and I'd be willing to bet your daughter would

> sure miss you too! Sometimes, bad things happen to good people so they can

> reacess their lives and make fresh starts.

>

> I'm praying for you Dave!

>

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 6:13:15 PM

> Subject: Re: (unknown)

>

>

> Diane, this is one of my biggest problems. I do not have a strong belief

> in the here after, religion, etc. I do not want to offend those that do. I

> wish I did, but I don't. I see how much it helps people, but I have not

> been able to grasp the concept. I come from a family that both parents were

> strong believers and they took me to church regularly. I don't know why I

> have had such a hard time with faith. I am not of the belief that the world

> happened in a vacuum. There is a degree of spirituality in me. I'm sure

> you don't want me to go into the usual talk of why bad things happen to good

> people and good things happen to bad people. I just am unable to square the

> suffering people endure with the idea of God having his hand on the

> throttle, so to speak. I hope I have not offended you or anyone. I admire

> your ability to believe without question. I know there is a force of good

> in the universe, and certainly a evil in the

> universe. I know it would help me if I had your faith, but it avoids me or

> I avoid it. Whichever way it is, the outcome for me is the same, lack of

> faith for which I, in the end, pay the price.

> Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 5:28:49 PM

> Subject: Re: (unknown)

>

>

> Hi Dave,

>

> No, Terry opted not to try for a transplant. He had been at death's door a

> couple of times prior to even knowing about his liver disease. He felt much

> more peaceful about death than dealing with life after a transplant. Also,

> he had a genetic disorder that predisposed him to liver disease. He thought

> it would be selfish of him to ask for a donor liver, knowing his body would

> begin attacking it as soon as it was transplanted, when so few are

> available. It was so hard to sit by and watch him make that decision, but I

> had watched Momma die of renal failure and had seen all she had gone through

> with the dialysis and didn't want to emotionally force anything on Terry

> that he wasn't ready to deal with. I told him I would support him fully in

> whatever decision he made; if he chose to go for the transplant, I would be

> there every step of the way but if not, I would also help him live his life

> to the fullest until the time came for him to go home

> with the Lord. As hard as it was to give him up, I did so knowing I had

> done for him what his heart desired and loved him completely until Jesus

> came for him.

>

> Now that I have cirrhosis as well, I am much in the same boat as

> you. Terry and I had three children who never made it to this world. I

> have two sisters and a niece and four nephews who love me dearly. However,

> I am not comfortable asking them to take on the role of my caregiver as this

> disease progresses. I know how hard that is on the loved one and I don't

> want them to have to go through that. I have already started checking in to

> in-patient hospice care for when that time comes. Whether I will consider a

> transplant or not is something I haven't really even thought about yet. I

> pray about it and just ask the Lord to help me make the right decision when

> the time comes.

>

> Whatever decision you make, please know that I am praying for you. I do

> not look forward to dealing with this disease, but I also don't allow myself

> to worry about it. I simply leave it with the Lord and know He already has

> a plan and all I have to do is submit myself to His will and plan for my

> life. My faith carries me through this, just as it has through so many

> other areas of my life.

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 5:05:45 PM

> Subject: Re: (unknown)

>

>

> Thanks for writing back Diane..And I am sorry you had to go through this

> with your husband...I know from dealing with close friends and family how

> difficult a progressive fatal disease is on the caregiver and others

> close..if I may ask, did your husband have a transplant? I am wrestling

> with that decision when it comes, and whether to put myself and family

> through that. I don't really have someone I can move in with during the

> recovery process, and would not put that burden on my daughter and her

> significant other. For one there is not room in her house, except a

> finished basement, and I don't see how someone could negotiate the stairs in

> that condition. For another reason her relationship is fragile I believe,

> and that would certainly not help, and though we are civil, we really don't

> care a lot for each other. I know some go into medical centers to

> recuperate and I'm fine with that option, since likely the progression

> either way will put

> me into one, but I still have a lot of soul searching to do about a

> transplant. Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 4:42:49 PM

> Subject: Re: (unknown)

>

>

> Dave, I am so sorry. Dealing with this disease wears so quickly on your

> nerves and makes you so sad, so often. Please know I am praying for you.

> Do make that call to your doctor tomorrow morning, especially since this is

> your first experience with the swelling in your extremities. Terry, my late

> husband, used to swell so badly in his feet that he couldn't walk because

> his feet would actually be rounded on the bottom and wouldn't flaten out,

> even when he was fully weight-bearing. I cannot say I know what you are

> going through from my personal experience, but I do know from having been

> with Terry as he went through it. It is agonizing for you and for those who

> love you. Again, I am so sorry that this has infringed upon your weekend

> with your daughter and grandson. Please update us after you speak with your

> doctor. My prayers are with you.

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 11:59:08 AM

> Subject: (unknown)

>

>

> I'm sorry I only seem to come here when things are bad, but seems they are

> mostly that way now...what has always been a great weekend when my daughter

> and grandson come up was full of agony for most of my visit...my legs, feet,

> and ankles swelled up so bad I could hardly walk, and my feet hurt very

> bad...finally this noon the swelling has mostly gone down..but I wonder for

> how long? I should call my doc tomorrow, but I get weary of doc's...this is

> a first in my journey of my feet and ankles swelling like this...I thought

> the ascites was bad, but that is more horrific..walking is terrible and just

> laying with my feet up to try and make the pain go away...and knowing things

> will, only progress into being worse...

> Dave

>

>

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Guest guest

Thanks Barby.  I was supposed to see my cardiologist today, but have some sort

of bug that is really bringing me down!  Praying I'm able to keep the

appointment with my PCP tomorrow.  I appreciate the information, even if it is

scary!

 

Warm Hugs...........

 

Di

http://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

Sent: Tuesday, September 15, 2009 6:49:41 AM

Subject: Re: (unknown)

 

diane,i think its possable,bobby glenn was compesadted last year, but they sais

he had mental slowing and confusion, and trust me he did and does.but not all

the time,it seems to be worse when his breath has that foul smell, might be a

connection there.

>

> > wow, you don't let cirrhosis occupy your mind much? Tell me how to

> > accomplish that?

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: diane chandler <dianechandler@ att.net>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Sunday, September 13, 2009 10:10:30 PM

> > Subject: Re: (unknown)

> >

> >

> > Yes, Dave, Hospice care is for the end-of-life and is something you

> > shouldn't consider until you have made your decision regarding

> > transplant. Give it much thought and consideration, both for yourself and

> > your grandson.

> >

> > None of us knows the number of our days. We walk about every day living

> > like we think we will live forever; but the truth is that any of us could go

> > within the next minute. I don't allow the thought that I have cirrhosis to

> > occupy too much of my time. I live my life and try my best to take care of

> > myself. When my time comes, it comes; end of story. I'm not a fatalist,

> > just a realist.

> >

> > I am always here if you need a friend or an ear to listen. I can't hide my

> > faith, but I won't shove it down your throat either. Good luck with the

> > call to your doctor tomorrow!

> >

> > Warm Hugs........ ...

> >

> > Di

> > http://auntdisexper imentallife. blogspot. com/

> >

> > ____________ _________ _________ __

> > From: dave dodds <daveliltoe@ yahoo. com>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Sunday, September 13, 2009 6:57:15 PM

> > Subject: Re: (unknown)

> >

> >

> > Diane, thanks for the moral support, and for praying for me. I guess you

> > could say, Lord knows I need it. What you were saying about my grandson is

> > very true. His Grandmother, my X, is very sick also. He could easily lose

> > out on knowing either of us well. He just turned two. My circumstances are

> > so much better than some that it annoys me I get on so much self-pity. I

> > could, when time comes, look into hospice. I think hospice is for the last

> > 6 months. I may be wrong, though. I don't know how far away I am from

> > needing a transplant yet. Several doc's gave me 5 yrs. a little less than 4

> > yrs. ago. My liver doc would not give me a length, saying he does nor

> > forecast the future. I appreciated him for that answer, and the others for

> > their honesty. As they say be careful what you ask. I kind of wish now,

> > when I asked, the other's would not have told me. I am sure they were going

> > by percentage's giving my symptoms. If they

> > were correct I am about 16 months away. As I have often thought, since

> > their prediction, very few really know how long they have or how they will

> > go. Dave

> >

> > ____________ _________ _________ __

> > From: diane chandler <dianechandler@ att.net>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Sunday, September 13, 2009 6:23:35 PM

> > Subject: Re: (unknown)

> >

> >

> > Dave, you have in no way offended me. To say that have faith, without

> > question, is certainly far from reality. I have come to a place in my life

> > where I rarely allow myself to question God; that has not always been so. I

> > struggled with my faith for many, many years through some terribly difficult

> > circumstances. I hope I won't offend you by saying I will pray for you and

> > ask you not to give up on God. He hasn't given up on you.

> >

> > That being said, I do honestly care about you and about what you are going

> > through. Cirrhosis is hard, just plain HARD. Every day is a journey into

> > the unknown and leads us down paths we never dreamed we would have to walk.

> > Uncertainly and depression are familiar friends. I do so hope your doctor

> > can help you with the edema. BTW, I just wanted to add that you should give

> > serious consideration to that transplant. Whether you do it or not, give it

> > every chance when deciding. You have a beautiful grandson who would so

> > desperately miss his Grandpa, and I'd be willing to bet your daughter would

> > sure miss you too! Sometimes, bad things happen to good people so they can

> > reacess their lives and make fresh starts.

> >

> > I'm praying for you Dave!

> >

> >

> > Warm Hugs........ ...

> >

> > Di

> > http://auntdisexper imentallife. blogspot. com/

> >

> > ____________ _________ _________ __

> > From: dave dodds <daveliltoe@ yahoo. com>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Sunday, September 13, 2009 6:13:15 PM

> > Subject: Re: (unknown)

> >

> >

> > Diane, this is one of my biggest problems. I do not have a strong belief

> > in the here after, religion, etc. I do not want to offend those that do. I

> > wish I did, but I don't. I see how much it helps people, but I have not

> > been able to grasp the concept. I come from a family that both parents were

> > strong believers and they took me to church regularly. I don't know why I

> > have had such a hard time with faith. I am not of the belief that the world

> > happened in a vacuum. There is a degree of spirituality in me. I'm sure

> > you don't want me to go into the usual talk of why bad things happen to good

> > people and good things happen to bad people. I just am unable to square the

> > suffering people endure with the idea of God having his hand on the

> > throttle, so to speak. I hope I have not offended you or anyone. I admire

> > your ability to believe without question. I know there is a force of good

> > in the universe, and certainly a evil in the

> > universe. I know it would help me if I had your faith, but it avoids me or

> > I avoid it. Whichever way it is, the outcome for me is the same, lack of

> > faith for which I, in the end, pay the price.

> > Dave

> >

> > ____________ _________ _________ __

> > From: diane chandler <dianechandler@ att.net>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Sunday, September 13, 2009 5:28:49 PM

> > Subject: Re: (unknown)

> >

> >

> > Hi Dave,

> >

> > No, Terry opted not to try for a transplant. He had been at death's door a

> > couple of times prior to even knowing about his liver disease. He felt much

> > more peaceful about death than dealing with life after a transplant. Also,

> > he had a genetic disorder that predisposed him to liver disease. He thought

> > it would be selfish of him to ask for a donor liver, knowing his body would

> > begin attacking it as soon as it was transplanted, when so few are

> > available. It was so hard to sit by and watch him make that decision, but I

> > had watched Momma die of renal failure and had seen all she had gone through

> > with the dialysis and didn't want to emotionally force anything on Terry

> > that he wasn't ready to deal with. I told him I would support him fully in

> > whatever decision he made; if he chose to go for the transplant, I would be

> > there every step of the way but if not, I would also help him live his life

> > to the fullest until the time came for him to go home

> > with the Lord. As hard as it was to give him up, I did so knowing I had

> > done for him what his heart desired and loved him completely until Jesus

> > came for him.

> >

> > Now that I have cirrhosis as well, I am much in the same boat as

> > you. Terry and I had three children who never made it to this world. I

> > have two sisters and a niece and four nephews who love me dearly. However,

> > I am not comfortable asking them to take on the role of my caregiver as this

> > disease progresses. I know how hard that is on the loved one and I don't

> > want them to have to go through that. I have already started checking in to

> > in-patient hospice care for when that time comes. Whether I will consider a

> > transplant or not is something I haven't really even thought about yet. I

> > pray about it and just ask the Lord to help me make the right decision when

> > the time comes.

> >

> > Whatever decision you make, please know that I am praying for you. I do

> > not look forward to dealing with this disease, but I also don't allow myself

> > to worry about it. I simply leave it with the Lord and know He already has

> > a plan and all I have to do is submit myself to His will and plan for my

> > life. My faith carries me through this, just as it has through so many

> > other areas of my life.

> >

> > Warm Hugs........ ...

> >

> > Di

> > http://auntdisexper imentallife. blogspot. com/

> >

> > ____________ _________ _________ __

> > From: dave dodds <daveliltoe@ yahoo. com>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Sunday, September 13, 2009 5:05:45 PM

> > Subject: Re: (unknown)

> >

> >

> > Thanks for writing back Diane..And I am sorry you had to go through this

> > with your husband...I know from dealing with close friends and family how

> > difficult a progressive fatal disease is on the caregiver and others

> > close..if I may ask, did your husband have a transplant? I am wrestling

> > with that decision when it comes, and whether to put myself and family

> > through that. I don't really have someone I can move in with during the

> > recovery process, and would not put that burden on my daughter and her

> > significant other. For one there is not room in her house, except a

> > finished basement, and I don't see how someone could negotiate the stairs in

> > that condition. For another reason her relationship is fragile I believe,

> > and that would certainly not help, and though we are civil, we really don't

> > care a lot for each other. I know some go into medical centers to

> > recuperate and I'm fine with that option, since likely the progression

> > either way will put

> > me into one, but I still have a lot of soul searching to do about a

> > transplant. Dave

> >

> > ____________ _________ _________ __

> > From: diane chandler <dianechandler@ att.net>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Sunday, September 13, 2009 4:42:49 PM

> > Subject: Re: (unknown)

> >

> >

> > Dave, I am so sorry. Dealing with this disease wears so quickly on your

> > nerves and makes you so sad, so often. Please know I am praying for you.

> > Do make that call to your doctor tomorrow morning, especially since this is

> > your first experience with the swelling in your extremities. Terry, my late

> > husband, used to swell so badly in his feet that he couldn't walk because

> > his feet would actually be rounded on the bottom and wouldn't flaten out,

> > even when he was fully weight-bearing. I cannot say I know what you are

> > going through from my personal experience, but I do know from having been

> > with Terry as he went through it. It is agonizing for you and for those who

> > love you. Again, I am so sorry that this has infringed upon your weekend

> > with your daughter and grandson. Please update us after you speak with your

> > doctor. My prayers are with you.

> >

> > Warm Hugs........ ...

> >

> > Di

> > http://auntdisexper imentallife. blogspot. com/

> >

> > ____________ _________ _________ __

> > From: dave dodds <daveliltoe@ yahoo. com>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Sunday, September 13, 2009 11:59:08 AM

> > Subject: (unknown)

> >

> >

> > I'm sorry I only seem to come here when things are bad, but seems they are

> > mostly that way now...what has always been a great weekend when my daughter

> > and grandson come up was full of agony for most of my visit...my legs, feet,

> > and ankles swelled up so bad I could hardly walk, and my feet hurt very

> > bad...finally this noon the swelling has mostly gone down..but I wonder for

> > how long? I should call my doc tomorrow, but I get weary of doc's...this is

> > a first in my journey of my feet and ankles swelling like this...I thought

> > the ascites was bad, but that is more horrific..walking is terrible and just

> > laying with my feet up to try and make the pain go away...and knowing things

> > will, only progress into being worse...

> > Dave

> >

> >

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theres that cardio word again,are you just going for a check up,or are you

having issues with your heart??? i would never want to scare you toots! just

trying to be helpful,we are still awaiting to here from dr. about the new gi ,i

called today and found out hes been out of the office this week ,family

emergency,so that explains it, dr. douglas is one of the best most compassinate

dr. i know and always does what he says he will, so know i feel bad that i was

upset cause of no call yesterday or today. but he will be in tommorrow phew.

praying for him and his family and hoping everything is ok with him and his.love

ya babe!

> >

> > > wow, you don't let cirrhosis occupy your mind much? Tell me how to

> > > accomplish that?

> > >

> > >

> > >

> > >

> > > ____________ _________ _________ __

> > > From: diane chandler <dianechandler@ att.net>

> > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > Sent: Sunday, September 13, 2009 10:10:30 PM

> > > Subject: Re: (unknown)

> > >

> > >

> > > Yes, Dave, Hospice care is for the end-of-life and is something you

> > > shouldn't consider until you have made your decision regarding

> > > transplant. Give it much thought and consideration, both for yourself and

> > > your grandson.

> > >

> > > None of us knows the number of our days. We walk about every day living

> > > like we think we will live forever; but the truth is that any of us could

go

> > > within the next minute. I don't allow the thought that I have cirrhosis to

> > > occupy too much of my time. I live my life and try my best to take care of

> > > myself. When my time comes, it comes; end of story. I'm not a fatalist,

> > > just a realist.

> > >

> > > I am always here if you need a friend or an ear to listen. I can't hide my

> > > faith, but I won't shove it down your throat either. Good luck with the

> > > call to your doctor tomorrow!

> > >

> > > Warm Hugs........ ...

> > >

> > > Di

> > > http://auntdisexper imentallife. blogspot. com/

> > >

> > > ____________ _________ _________ __

> > > From: dave dodds <daveliltoe@ yahoo. com>

> > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > Sent: Sunday, September 13, 2009 6:57:15 PM

> > > Subject: Re: (unknown)

> > >

> > >

> > > Diane, thanks for the moral support, and for praying for me. I guess you

> > > could say, Lord knows I need it. What you were saying about my grandson is

> > > very true. His Grandmother, my X, is very sick also. He could easily lose

> > > out on knowing either of us well. He just turned two. My circumstances are

> > > so much better than some that it annoys me I get on so much self-pity. I

> > > could, when time comes, look into hospice. I think hospice is for the last

> > > 6 months. I may be wrong, though. I don't know how far away I am from

> > > needing a transplant yet. Several doc's gave me 5 yrs. a little less than

4

> > > yrs. ago. My liver doc would not give me a length, saying he does nor

> > > forecast the future. I appreciated him for that answer, and the others for

> > > their honesty. As they say be careful what you ask. I kind of wish now,

> > > when I asked, the other's would not have told me. I am sure they were

going

> > > by percentage's giving my symptoms. If they

> > > were correct I am about 16 months away. As I have often thought, since

> > > their prediction, very few really know how long they have or how they will

> > > go. Dave

> > >

> > > ____________ _________ _________ __

> > > From: diane chandler <dianechandler@ att.net>

> > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > Sent: Sunday, September 13, 2009 6:23:35 PM

> > > Subject: Re: (unknown)

> > >

> > >

> > > Dave, you have in no way offended me. To say that have faith, without

> > > question, is certainly far from reality. I have come to a place in my life

> > > where I rarely allow myself to question God; that has not always been so.

I

> > > struggled with my faith for many, many years through some terribly

difficult

> > > circumstances. I hope I won't offend you by saying I will pray for you and

> > > ask you not to give up on God. He hasn't given up on you.

> > >

> > > That being said, I do honestly care about you and about what you are going

> > > through. Cirrhosis is hard, just plain HARD. Every day is a journey into

> > > the unknown and leads us down paths we never dreamed we would have to

walk.

> > > Uncertainly and depression are familiar friends. I do so hope your doctor

> > > can help you with the edema. BTW, I just wanted to add that you should

give

> > > serious consideration to that transplant. Whether you do it or not, give

it

> > > every chance when deciding. You have a beautiful grandson who would so

> > > desperately miss his Grandpa, and I'd be willing to bet your daughter

would

> > > sure miss you too! Sometimes, bad things happen to good people so they can

> > > reacess their lives and make fresh starts.

> > >

> > > I'm praying for you Dave!

> > >

> > >

> > > Warm Hugs........ ...

> > >

> > > Di

> > > http://auntdisexper imentallife. blogspot. com/

> > >

> > > ____________ _________ _________ __

> > > From: dave dodds <daveliltoe@ yahoo. com>

> > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > Sent: Sunday, September 13, 2009 6:13:15 PM

> > > Subject: Re: (unknown)

> > >

> > >

> > > Diane, this is one of my biggest problems. I do not have a strong belief

> > > in the here after, religion, etc. I do not want to offend those that do. I

> > > wish I did, but I don't. I see how much it helps people, but I have not

> > > been able to grasp the concept. I come from a family that both parents

were

> > > strong believers and they took me to church regularly. I don't know why I

> > > have had such a hard time with faith. I am not of the belief that the

world

> > > happened in a vacuum. There is a degree of spirituality in me. I'm sure

> > > you don't want me to go into the usual talk of why bad things happen to

good

> > > people and good things happen to bad people. I just am unable to square

the

> > > suffering people endure with the idea of God having his hand on the

> > > throttle, so to speak. I hope I have not offended you or anyone. I admire

> > > your ability to believe without question. I know there is a force of good

> > > in the universe, and certainly a evil in the

> > > universe. I know it would help me if I had your faith, but it avoids me or

> > > I avoid it. Whichever way it is, the outcome for me is the same, lack of

> > > faith for which I, in the end, pay the price.

> > > Dave

> > >

> > > ____________ _________ _________ __

> > > From: diane chandler <dianechandler@ att.net>

> > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > Sent: Sunday, September 13, 2009 5:28:49 PM

> > > Subject: Re: (unknown)

> > >

> > >

> > > Hi Dave,

> > >

> > > No, Terry opted not to try for a transplant. He had been at death's door a

> > > couple of times prior to even knowing about his liver disease. He felt

much

> > > more peaceful about death than dealing with life after a transplant. Also,

> > > he had a genetic disorder that predisposed him to liver disease. He

thought

> > > it would be selfish of him to ask for a donor liver, knowing his body

would

> > > begin attacking it as soon as it was transplanted, when so few are

> > > available. It was so hard to sit by and watch him make that decision, but

I

> > > had watched Momma die of renal failure and had seen all she had gone

through

> > > with the dialysis and didn't want to emotionally force anything on Terry

> > > that he wasn't ready to deal with. I told him I would support him fully in

> > > whatever decision he made; if he chose to go for the transplant, I would

be

> > > there every step of the way but if not, I would also help him live his

life

> > > to the fullest until the time came for him to go home

> > > with the Lord. As hard as it was to give him up, I did so knowing I had

> > > done for him what his heart desired and loved him completely until Jesus

> > > came for him.

> > >

> > > Now that I have cirrhosis as well, I am much in the same boat as

> > > you. Terry and I had three children who never made it to this world. I

> > > have two sisters and a niece and four nephews who love me dearly. However,

> > > I am not comfortable asking them to take on the role of my caregiver as

this

> > > disease progresses. I know how hard that is on the loved one and I don't

> > > want them to have to go through that. I have already started checking in

to

> > > in-patient hospice care for when that time comes. Whether I will consider

a

> > > transplant or not is something I haven't really even thought about yet. I

> > > pray about it and just ask the Lord to help me make the right decision

when

> > > the time comes.

> > >

> > > Whatever decision you make, please know that I am praying for you. I do

> > > not look forward to dealing with this disease, but I also don't allow

myself

> > > to worry about it. I simply leave it with the Lord and know He already has

> > > a plan and all I have to do is submit myself to His will and plan for my

> > > life. My faith carries me through this, just as it has through so many

> > > other areas of my life.

> > >

> > > Warm Hugs........ ...

> > >

> > > Di

> > > http://auntdisexper imentallife. blogspot. com/

> > >

> > > ____________ _________ _________ __

> > > From: dave dodds <daveliltoe@ yahoo. com>

> > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > Sent: Sunday, September 13, 2009 5:05:45 PM

> > > Subject: Re: (unknown)

> > >

> > >

> > > Thanks for writing back Diane..And I am sorry you had to go through this

> > > with your husband...I know from dealing with close friends and family how

> > > difficult a progressive fatal disease is on the caregiver and others

> > > close..if I may ask, did your husband have a transplant? I am wrestling

> > > with that decision when it comes, and whether to put myself and family

> > > through that. I don't really have someone I can move in with during the

> > > recovery process, and would not put that burden on my daughter and her

> > > significant other. For one there is not room in her house, except a

> > > finished basement, and I don't see how someone could negotiate the stairs

in

> > > that condition. For another reason her relationship is fragile I believe,

> > > and that would certainly not help, and though we are civil, we really

don't

> > > care a lot for each other. I know some go into medical centers to

> > > recuperate and I'm fine with that option, since likely the progression

> > > either way will put

> > > me into one, but I still have a lot of soul searching to do about a

> > > transplant. Dave

> > >

> > > ____________ _________ _________ __

> > > From: diane chandler <dianechandler@ att.net>

> > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > Sent: Sunday, September 13, 2009 4:42:49 PM

> > > Subject: Re: (unknown)

> > >

> > >

> > > Dave, I am so sorry. Dealing with this disease wears so quickly on your

> > > nerves and makes you so sad, so often. Please know I am praying for you.

> > > Do make that call to your doctor tomorrow morning, especially since this

is

> > > your first experience with the swelling in your extremities. Terry, my

late

> > > husband, used to swell so badly in his feet that he couldn't walk because

> > > his feet would actually be rounded on the bottom and wouldn't flaten out,

> > > even when he was fully weight-bearing. I cannot say I know what you are

> > > going through from my personal experience, but I do know from having been

> > > with Terry as he went through it. It is agonizing for you and for those

who

> > > love you. Again, I am so sorry that this has infringed upon your weekend

> > > with your daughter and grandson. Please update us after you speak with

your

> > > doctor. My prayers are with you.

> > >

> > > Warm Hugs........ ...

> > >

> > > Di

> > > http://auntdisexper imentallife. blogspot. com/

> > >

> > > ____________ _________ _________ __

> > > From: dave dodds <daveliltoe@ yahoo. com>

> > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > Sent: Sunday, September 13, 2009 11:59:08 AM

> > > Subject: (unknown)

> > >

> > >

> > > I'm sorry I only seem to come here when things are bad, but seems they are

> > > mostly that way now...what has always been a great weekend when my

daughter

> > > and grandson come up was full of agony for most of my visit...my legs,

feet,

> > > and ankles swelled up so bad I could hardly walk, and my feet hurt very

> > > bad...finally this noon the swelling has mostly gone down..but I wonder

for

> > > how long? I should call my doc tomorrow, but I get weary of doc's...this

is

> > > a first in my journey of my feet and ankles swelling like this...I thought

> > > the ascites was bad, but that is more horrific..walking is terrible and

just

> > > laying with my feet up to try and make the pain go away...and knowing

things

> > > will, only progress into being worse...

> > > Dave

> > >

> > >

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Yes, Diane. The answer is yes, you can have portal systemic encephalopathy in

the absence of other decompensations. Having it diagnosed early and treat might

prevent it from getting worse. You are already an expert on what will make it

better , or worse because of your loving husband. My hepatologist relies much on

anecdotal evidence in his clinic. It is so hard to notice sub clinical PSE, but

your loved ones will notice before any one else. Have you talked to the doctor

about this? BTW, have you seen a hepatiologist yet??

Love, Bobby

long life, old age, everything good-Apache prayer

________________________________

To: livercirrhosissupport

Sent: Monday, September 14, 2009 9:16:08 PM

Subject: Re: (unknown)

My sister mentioned to me today that she is concerned about me because it seems

like I'm confused a lot lately. I'm a bit concerned about that. As far as I

know, I don't have any decompensating affects from the cirrhosis. Could

encephalopathy occur in the absence of other decompensating factors? I have an

appointment with my PCP on Wednesday and suppose I should tell him what my

sister said, huh?

Warm Hugs........ ...

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: Jill <jillkstewart@ yahoo.com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Monday, September 14, 2009 9:04:50 PM

Subject: Re: (unknown)

it's okay, i knew who you were talking to! LOL!!!!

Love,Jill

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

> wow, you don't let cirrhosis occupy your mind much? Tell me how to

> accomplish that?

>

>

>

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 10:10:30 PM

> Subject: Re: (unknown)

>

>

> Yes, Dave, Hospice care is for the end-of-life and is something you

> shouldn't consider until you have made your decision regarding

> transplant. Give it much thought and consideration, both for yourself and

> your grandson.

>

> None of us knows the number of our days. We walk about every day living

> like we think we will live forever; but the truth is that any of us could go

> within the next minute. I don't allow the thought that I have cirrhosis to

> occupy too much of my time. I live my life and try my best to take care of

> myself. When my time comes, it comes; end of story. I'm not a fatalist,

> just a realist.

>

> I am always here if you need a friend or an ear to listen. I can't hide my

> faith, but I won't shove it down your throat either. Good luck with the

> call to your doctor tomorrow!

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 6:57:15 PM

> Subject: Re: (unknown)

>

>

> Diane, thanks for the moral support, and for praying for me. I guess you

> could say, Lord knows I need it. What you were saying about my grandson is

> very true. His Grandmother, my X, is very sick also. He could easily lose

> out on knowing either of us well. He just turned two. My circumstances are

> so much better than some that it annoys me I get on so much self-pity. I

> could, when time comes, look into hospice. I think hospice is for the last

> 6 months. I may be wrong, though. I don't know how far away I am from

> needing a transplant yet. Several doc's gave me 5 yrs. a little less than 4

> yrs. ago. My liver doc would not give me a length, saying he does nor

> forecast the future. I appreciated him for that answer, and the others for

> their honesty. As they say be careful what you ask. I kind of wish now,

> when I asked, the other's would not have told me. I am sure they were going

> by percentage's giving my symptoms. If they

> were correct I am about 16 months away. As I have often thought, since

> their prediction, very few really know how long they have or how they will

> go. Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 6:23:35 PM

> Subject: Re: (unknown)

>

>

> Dave, you have in no way offended me. To say that have faith, without

> question, is certainly far from reality. I have come to a place in my life

> where I rarely allow myself to question God; that has not always been so. I

> struggled with my faith for many, many years through some terribly difficult

> circumstances. I hope I won't offend you by saying I will pray for you and

> ask you not to give up on God. He hasn't given up on you.

>

> That being said, I do honestly care about you and about what you are going

> through. Cirrhosis is hard, just plain HARD. Every day is a journey into

> the unknown and leads us down paths we never dreamed we would have to walk.

> Uncertainly and depression are familiar friends. I do so hope your doctor

> can help you with the edema. BTW, I just wanted to add that you should give

> serious consideration to that transplant. Whether you do it or not, give it

> every chance when deciding. You have a beautiful grandson who would so

> desperately miss his Grandpa, and I'd be willing to bet your daughter would

> sure miss you too! Sometimes, bad things happen to good people so they can

> reacess their lives and make fresh starts.

>

> I'm praying for you Dave!

>

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 6:13:15 PM

> Subject: Re: (unknown)

>

>

> Diane, this is one of my biggest problems. I do not have a strong belief

> in the here after, religion, etc. I do not want to offend those that do. I

> wish I did, but I don't. I see how much it helps people, but I have not

> been able to grasp the concept. I come from a family that both parents were

> strong believers and they took me to church regularly. I don't know why I

> have had such a hard time with faith. I am not of the belief that the world

> happened in a vacuum. There is a degree of spirituality in me. I'm sure

> you don't want me to go into the usual talk of why bad things happen to good

> people and good things happen to bad people. I just am unable to square the

> suffering people endure with the idea of God having his hand on the

> throttle, so to speak. I hope I have not offended you or anyone. I admire

> your ability to believe without question. I know there is a force of good

> in the universe, and certainly a evil in the

> universe. I know it would help me if I had your faith, but it avoids me or

> I avoid it. Whichever way it is, the outcome for me is the same, lack of

> faith for which I, in the end, pay the price.

> Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 5:28:49 PM

> Subject: Re: (unknown)

>

>

> Hi Dave,

>

> No, Terry opted not to try for a transplant. He had been at death's door a

> couple of times prior to even knowing about his liver disease. He felt much

> more peaceful about death than dealing with life after a transplant. Also,

> he had a genetic disorder that predisposed him to liver disease. He thought

> it would be selfish of him to ask for a donor liver, knowing his body would

> begin attacking it as soon as it was transplanted, when so few are

> available. It was so hard to sit by and watch him make that decision, but I

> had watched Momma die of renal failure and had seen all she had gone through

> with the dialysis and didn't want to emotionally force anything on Terry

> that he wasn't ready to deal with. I told him I would support him fully in

> whatever decision he made; if he chose to go for the transplant, I would be

> there every step of the way but if not, I would also help him live his life

> to the fullest until the time came for him to go home

> with the Lord. As hard as it was to give him up, I did so knowing I had

> done for him what his heart desired and loved him completely until Jesus

> came for him.

>

> Now that I have cirrhosis as well, I am much in the same boat as

> you. Terry and I had three children who never made it to this world. I

> have two sisters and a niece and four nephews who love me dearly. However,

> I am not comfortable asking them to take on the role of my caregiver as this

> disease progresses. I know how hard that is on the loved one and I don't

> want them to have to go through that. I have already started checking in to

> in-patient hospice care for when that time comes. Whether I will consider a

> transplant or not is something I haven't really even thought about yet. I

> pray about it and just ask the Lord to help me make the right decision when

> the time comes.

>

> Whatever decision you make, please know that I am praying for you. I do

> not look forward to dealing with this disease, but I also don't allow myself

> to worry about it. I simply leave it with the Lord and know He already has

> a plan and all I have to do is submit myself to His will and plan for my

> life. My faith carries me through this, just as it has through so many

> other areas of my life.

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 5:05:45 PM

> Subject: Re: (unknown)

>

>

> Thanks for writing back Diane..And I am sorry you had to go through this

> with your husband...I know from dealing with close friends and family how

> difficult a progressive fatal disease is on the caregiver and others

> close..if I may ask, did your husband have a transplant? I am wrestling

> with that decision when it comes, and whether to put myself and family

> through that. I don't really have someone I can move in with during the

> recovery process, and would not put that burden on my daughter and her

> significant other. For one there is not room in her house, except a

> finished basement, and I don't see how someone could negotiate the stairs in

> that condition. For another reason her relationship is fragile I believe,

> and that would certainly not help, and though we are civil, we really don't

> care a lot for each other. I know some go into medical centers to

> recuperate and I'm fine with that option, since likely the progression

> either way will put

> me into one, but I still have a lot of soul searching to do about a

> transplant. Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 4:42:49 PM

> Subject: Re: (unknown)

>

>

> Dave, I am so sorry. Dealing with this disease wears so quickly on your

> nerves and makes you so sad, so often. Please know I am praying for you.

> Do make that call to your doctor tomorrow morning, especially since this is

> your first experience with the swelling in your extremities. Terry, my late

> husband, used to swell so badly in his feet that he couldn't walk because

> his feet would actually be rounded on the bottom and wouldn't flaten out,

> even when he was fully weight-bearing. I cannot say I know what you are

> going through from my personal experience, but I do know from having been

> with Terry as he went through it. It is agonizing for you and for those who

> love you. Again, I am so sorry that this has infringed upon your weekend

> with your daughter and grandson. Please update us after you speak with your

> doctor. My prayers are with you.

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 11:59:08 AM

> Subject: (unknown)

>

>

> I'm sorry I only seem to come here when things are bad, but seems they are

> mostly that way now...what has always been a great weekend when my daughter

> and grandson come up was full of agony for most of my visit...my legs, feet,

> and ankles swelled up so bad I could hardly walk, and my feet hurt very

> bad...finally this noon the swelling has mostly gone down..but I wonder for

> how long? I should call my doc tomorrow, but I get weary of doc's...this is

> a first in my journey of my feet and ankles swelling like this...I thought

> the ascites was bad, but that is more horrific..walking is terrible and just

> laying with my feet up to try and make the pain go away...and knowing things

> will, only progress into being worse...

> Dave

>

>

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It was just a checkup.  I have this blockage in the branch of an artery that

cannot be stented, so we have to keep a watch on it just to be sure we don't let

it go too far without doing the surgery.  I will do the surgery if it becomes

absolutely necessary, but not until.  I am in no hurry to have heart surgery! 

Glad you found out what was going on with the new GI and that you feel better

about the wait.  Praying he and his family are okay and that he can see Bobby

Glen very soon.  Love ya sweetie!

 

Warm Hugs...........

 

Di

http://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

Sent: Tuesday, September 15, 2009 5:21:21 PM

Subject: Re: (unknown)

 

theres that cardio word again,are you just going for a check up,or are you

having issues with your heart??? i would never want to scare you toots! just

trying to be helpful,we are still awaiting to here from dr. about the new gi ,i

called today and found out hes been out of the office this week ,family

emergency,so that explains it, dr. douglas is one of the best most compassinate

dr. i know and always does what he says he will, so know i feel bad that i was

upset cause of no call yesterday or today. but he will be in tommorrow phew.

praying for him and his family and hoping everything is ok with him and his.love

ya babe!

> >

> > > wow, you don't let cirrhosis occupy your mind much? Tell me how to

> > > accomplish that?

> > >

> > >

> > >

> > >

> > > ____________ _________ _________ __

> > > From: diane chandler <dianechandler@ att.net>

> > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > Sent: Sunday, September 13, 2009 10:10:30 PM

> > > Subject: Re: (unknown)

> > >

> > >

> > > Yes, Dave, Hospice care is for the end-of-life and is something you

> > > shouldn't consider until you have made your decision regarding

> > > transplant. Give it much thought and consideration, both for yourself and

> > > your grandson.

> > >

> > > None of us knows the number of our days. We walk about every day living

> > > like we think we will live forever; but the truth is that any of us could

go

> > > within the next minute. I don't allow the thought that I have cirrhosis to

> > > occupy too much of my time. I live my life and try my best to take care of

> > > myself. When my time comes, it comes; end of story. I'm not a fatalist,

> > > just a realist.

> > >

> > > I am always here if you need a friend or an ear to listen. I can't hide my

> > > faith, but I won't shove it down your throat either. Good luck with the

> > > call to your doctor tomorrow!

> > >

> > > Warm Hugs........ ...

> > >

> > > Di

> > > http://auntdisexper imentallife. blogspot. com/

> > >

> > > ____________ _________ _________ __

> > > From: dave dodds <daveliltoe@ yahoo. com>

> > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > Sent: Sunday, September 13, 2009 6:57:15 PM

> > > Subject: Re: (unknown)

> > >

> > >

> > > Diane, thanks for the moral support, and for praying for me. I guess you

> > > could say, Lord knows I need it. What you were saying about my grandson is

> > > very true. His Grandmother, my X, is very sick also. He could easily lose

> > > out on knowing either of us well. He just turned two. My circumstances are

> > > so much better than some that it annoys me I get on so much self-pity. I

> > > could, when time comes, look into hospice. I think hospice is for the last

> > > 6 months. I may be wrong, though. I don't know how far away I am from

> > > needing a transplant yet. Several doc's gave me 5 yrs. a little less than

4

> > > yrs. ago. My liver doc would not give me a length, saying he does nor

> > > forecast the future. I appreciated him for that answer, and the others for

> > > their honesty. As they say be careful what you ask. I kind of wish now,

> > > when I asked, the other's would not have told me. I am sure they were

going

> > > by percentage's giving my symptoms. If they

> > > were correct I am about 16 months away. As I have often thought, since

> > > their prediction, very few really know how long they have or how they will

> > > go. Dave

> > >

> > > ____________ _________ _________ __

> > > From: diane chandler <dianechandler@ att.net>

> > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > Sent: Sunday, September 13, 2009 6:23:35 PM

> > > Subject: Re: (unknown)

> > >

> > >

> > > Dave, you have in no way offended me. To say that have faith, without

> > > question, is certainly far from reality. I have come to a place in my life

> > > where I rarely allow myself to question God; that has not always been so.

I

> > > struggled with my faith for many, many years through some terribly

difficult

> > > circumstances. I hope I won't offend you by saying I will pray for you and

> > > ask you not to give up on God. He hasn't given up on you.

> > >

> > > That being said, I do honestly care about you and about what you are going

> > > through. Cirrhosis is hard, just plain HARD. Every day is a journey into

> > > the unknown and leads us down paths we never dreamed we would have to

walk.

> > > Uncertainly and depression are familiar friends. I do so hope your doctor

> > > can help you with the edema. BTW, I just wanted to add that you should

give

> > > serious consideration to that transplant. Whether you do it or not, give

it

> > > every chance when deciding. You have a beautiful grandson who would so

> > > desperately miss his Grandpa, and I'd be willing to bet your daughter

would

> > > sure miss you too! Sometimes, bad things happen to good people so they can

> > > reacess their lives and make fresh starts.

> > >

> > > I'm praying for you Dave!

> > >

> > >

> > > Warm Hugs........ ...

> > >

> > > Di

> > > http://auntdisexper imentallife. blogspot. com/

> > >

> > > ____________ _________ _________ __

> > > From: dave dodds <daveliltoe@ yahoo. com>

> > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > Sent: Sunday, September 13, 2009 6:13:15 PM

> > > Subject: Re: (unknown)

> > >

> > >

> > > Diane, this is one of my biggest problems. I do not have a strong belief

> > > in the here after, religion, etc. I do not want to offend those that do. I

> > > wish I did, but I don't. I see how much it helps people, but I have not

> > > been able to grasp the concept. I come from a family that both parents

were

> > > strong believers and they took me to church regularly. I don't know why I

> > > have had such a hard time with faith. I am not of the belief that the

world

> > > happened in a vacuum. There is a degree of spirituality in me. I'm sure

> > > you don't want me to go into the usual talk of why bad things happen to

good

> > > people and good things happen to bad people. I just am unable to square

the

> > > suffering people endure with the idea of God having his hand on the

> > > throttle, so to speak. I hope I have not offended you or anyone. I admire

> > > your ability to believe without question. I know there is a force of good

> > > in the universe, and certainly a evil in the

> > > universe. I know it would help me if I had your faith, but it avoids me or

> > > I avoid it. Whichever way it is, the outcome for me is the same, lack of

> > > faith for which I, in the end, pay the price.

> > > Dave

> > >

> > > ____________ _________ _________ __

> > > From: diane chandler <dianechandler@ att.net>

> > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > Sent: Sunday, September 13, 2009 5:28:49 PM

> > > Subject: Re: (unknown)

> > >

> > >

> > > Hi Dave,

> > >

> > > No, Terry opted not to try for a transplant. He had been at death's door a

> > > couple of times prior to even knowing about his liver disease. He felt

much

> > > more peaceful about death than dealing with life after a transplant. Also,

> > > he had a genetic disorder that predisposed him to liver disease. He

thought

> > > it would be selfish of him to ask for a donor liver, knowing his body

would

> > > begin attacking it as soon as it was transplanted, when so few are

> > > available. It was so hard to sit by and watch him make that decision, but

I

> > > had watched Momma die of renal failure and had seen all she had gone

through

> > > with the dialysis and didn't want to emotionally force anything on Terry

> > > that he wasn't ready to deal with. I told him I would support him fully in

> > > whatever decision he made; if he chose to go for the transplant, I would

be

> > > there every step of the way but if not, I would also help him live his

life

> > > to the fullest until the time came for him to go home

> > > with the Lord. As hard as it was to give him up, I did so knowing I had

> > > done for him what his heart desired and loved him completely until Jesus

> > > came for him.

> > >

> > > Now that I have cirrhosis as well, I am much in the same boat as

> > > you. Terry and I had three children who never made it to this world. I

> > > have two sisters and a niece and four nephews who love me dearly. However,

> > > I am not comfortable asking them to take on the role of my caregiver as

this

> > > disease progresses. I know how hard that is on the loved one and I don't

> > > want them to have to go through that. I have already started checking in

to

> > > in-patient hospice care for when that time comes. Whether I will consider

a

> > > transplant or not is something I haven't really even thought about yet. I

> > > pray about it and just ask the Lord to help me make the right decision

when

> > > the time comes.

> > >

> > > Whatever decision you make, please know that I am praying for you. I do

> > > not look forward to dealing with this disease, but I also don't allow

myself

> > > to worry about it. I simply leave it with the Lord and know He already has

> > > a plan and all I have to do is submit myself to His will and plan for my

> > > life. My faith carries me through this, just as it has through so many

> > > other areas of my life.

> > >

> > > Warm Hugs........ ...

> > >

> > > Di

> > > http://auntdisexper imentallife. blogspot. com/

> > >

> > > ____________ _________ _________ __

> > > From: dave dodds <daveliltoe@ yahoo. com>

> > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > Sent: Sunday, September 13, 2009 5:05:45 PM

> > > Subject: Re: (unknown)

> > >

> > >

> > > Thanks for writing back Diane..And I am sorry you had to go through this

> > > with your husband...I know from dealing with close friends and family how

> > > difficult a progressive fatal disease is on the caregiver and others

> > > close..if I may ask, did your husband have a transplant? I am wrestling

> > > with that decision when it comes, and whether to put myself and family

> > > through that. I don't really have someone I can move in with during the

> > > recovery process, and would not put that burden on my daughter and her

> > > significant other. For one there is not room in her house, except a

> > > finished basement, and I don't see how someone could negotiate the stairs

in

> > > that condition. For another reason her relationship is fragile I believe,

> > > and that would certainly not help, and though we are civil, we really

don't

> > > care a lot for each other. I know some go into medical centers to

> > > recuperate and I'm fine with that option, since likely the progression

> > > either way will put

> > > me into one, but I still have a lot of soul searching to do about a

> > > transplant. Dave

> > >

> > > ____________ _________ _________ __

> > > From: diane chandler <dianechandler@ att.net>

> > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > Sent: Sunday, September 13, 2009 4:42:49 PM

> > > Subject: Re: (unknown)

> > >

> > >

> > > Dave, I am so sorry. Dealing with this disease wears so quickly on your

> > > nerves and makes you so sad, so often. Please know I am praying for you.

> > > Do make that call to your doctor tomorrow morning, especially since this

is

> > > your first experience with the swelling in your extremities. Terry, my

late

> > > husband, used to swell so badly in his feet that he couldn't walk because

> > > his feet would actually be rounded on the bottom and wouldn't flaten out,

> > > even when he was fully weight-bearing. I cannot say I know what you are

> > > going through from my personal experience, but I do know from having been

> > > with Terry as he went through it. It is agonizing for you and for those

who

> > > love you. Again, I am so sorry that this has infringed upon your weekend

> > > with your daughter and grandson. Please update us after you speak with

your

> > > doctor. My prayers are with you.

> > >

> > > Warm Hugs........ ...

> > >

> > > Di

> > > http://auntdisexper imentallife. blogspot. com/

> > >

> > > ____________ _________ _________ __

> > > From: dave dodds <daveliltoe@ yahoo. com>

> > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > Sent: Sunday, September 13, 2009 11:59:08 AM

> > > Subject: (unknown)

> > >

> > >

> > > I'm sorry I only seem to come here when things are bad, but seems they are

> > > mostly that way now...what has always been a great weekend when my

daughter

> > > and grandson come up was full of agony for most of my visit...my legs,

feet,

> > > and ankles swelled up so bad I could hardly walk, and my feet hurt very

> > > bad...finally this noon the swelling has mostly gone down..but I wonder

for

> > > how long? I should call my doc tomorrow, but I get weary of doc's...this

is

> > > a first in my journey of my feet and ankles swelling like this...I thought

> > > the ascites was bad, but that is more horrific..walking is terrible and

just

> > > laying with my feet up to try and make the pain go away...and knowing

things

> > > will, only progress into being worse...

> > > Dave

> > >

> > >

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Diane, I had never checked out your blog. You really have a lot on there,

wasn't able to see everything in one lookysee. I was right, you are

elegant, at least when you dress up for pictures. lol You and your sisters

really look alike. I never had a sister, I am jealous. Can we trade, I

will give you one or both of my brothers for one of your sisters. Jan H

On Tue, Sep 15, 2009 at 8:27 PM, diane chandler wrote:

> It was just a checkup. I have this blockage in the branch of an artery

> that cannot be stented, so we have to keep a watch on it just to be sure we

> don't let it go too far without doing the surgery. I will do the surgery if

> it becomes absolutely necessary, but not until. I am in no hurry to have

> heart surgery!

>

> Glad you found out what was going on with the new GI and that you feel

> better about the wait. Praying he and his family are okay and that he can

> see Bobby Glen very soon. Love ya sweetie!

>

> Warm Hugs...........

>

> Di

> http://auntdisexperimentallife.blogspot.com/

>

>

>

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Tuesday, September 15, 2009 5:21:21 PM

> Subject: Re: (unknown)

>

>

> theres that cardio word again,are you just going for a check up,or are you

> having issues with your heart??? i would never want to scare you toots! just

> trying to be helpful,we are still awaiting to here from dr. about the new gi

> ,i called today and found out hes been out of the office this week ,family

> emergency,so that explains it, dr. douglas is one of the best most

> compassinate dr. i know and always does what he says he will, so know i feel

> bad that i was upset cause of no call yesterday or today. but he will be in

> tommorrow phew. praying for him and his family and hoping everything is ok

> with him and his.love ya babe!

> > >

> > > > wow, you don't let cirrhosis occupy your mind much? Tell me how to

> > > > accomplish that?

> > > >

> > > >

> > > >

> > > >

> > > > ____________ _________ _________ __

> > > > From: diane chandler <dianechandler@ att.net>

> > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > Sent: Sunday, September 13, 2009 10:10:30 PM

> > > > Subject: Re: (unknown)

> > > >

> > > >

> > > > Yes, Dave, Hospice care is for the end-of-life and is something you

> > > > shouldn't consider until you have made your decision regarding

> > > > transplant. Give it much thought and consideration, both for yourself

> and

> > > > your grandson.

> > > >

> > > > None of us knows the number of our days. We walk about every day

> living

> > > > like we think we will live forever; but the truth is that any of us

> could go

> > > > within the next minute. I don't allow the thought that I have

> cirrhosis to

> > > > occupy too much of my time. I live my life and try my best to take

> care of

> > > > myself. When my time comes, it comes; end of story. I'm not a

> fatalist,

> > > > just a realist.

> > > >

> > > > I am always here if you need a friend or an ear to listen. I can't

> hide my

> > > > faith, but I won't shove it down your throat either. Good luck with

> the

> > > > call to your doctor tomorrow!

> > > >

> > > > Warm Hugs........ ...

> > > >

> > > > Di

> > > > http://auntdisexper imentallife. blogspot. com/

> > > >

> > > > ____________ _________ _________ __

> > > > From: dave dodds <daveliltoe@ yahoo. com>

> > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > Sent: Sunday, September 13, 2009 6:57:15 PM

> > > > Subject: Re: (unknown)

> > > >

> > > >

> > > > Diane, thanks for the moral support, and for praying for me. I guess

> you

> > > > could say, Lord knows I need it. What you were saying about my

> grandson is

> > > > very true. His Grandmother, my X, is very sick also. He could easily

> lose

> > > > out on knowing either of us well. He just turned two. My

> circumstances are

> > > > so much better than some that it annoys me I get on so much

> self-pity. I

> > > > could, when time comes, look into hospice. I think hospice is for the

> last

> > > > 6 months. I may be wrong, though. I don't know how far away I am from

> > > > needing a transplant yet. Several doc's gave me 5 yrs. a little less

> than 4

> > > > yrs. ago. My liver doc would not give me a length, saying he does nor

> > > > forecast the future. I appreciated him for that answer, and the

> others for

> > > > their honesty. As they say be careful what you ask. I kind of wish

> now,

> > > > when I asked, the other's would not have told me. I am sure they were

> going

> > > > by percentage's giving my symptoms. If they

> > > > were correct I am about 16 months away. As I have often thought,

> since

> > > > their prediction, very few really know how long they have or how they

> will

> > > > go. Dave

> > > >

> > > > ____________ _________ _________ __

> > > > From: diane chandler <dianechandler@ att.net>

> > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > Sent: Sunday, September 13, 2009 6:23:35 PM

> > > > Subject: Re: (unknown)

> > > >

> > > >

> > > > Dave, you have in no way offended me. To say that have faith, without

> > > > question, is certainly far from reality. I have come to a place in my

> life

> > > > where I rarely allow myself to question God; that has not always been

> so. I

> > > > struggled with my faith for many, many years through some terribly

> difficult

> > > > circumstances. I hope I won't offend you by saying I will pray for

> you and

> > > > ask you not to give up on God. He hasn't given up on you.

> > > >

> > > > That being said, I do honestly care about you and about what you are

> going

> > > > through. Cirrhosis is hard, just plain HARD. Every day is a journey

> into

> > > > the unknown and leads us down paths we never dreamed we would have to

> walk.

> > > > Uncertainly and depression are familiar friends. I do so hope your

> doctor

> > > > can help you with the edema. BTW, I just wanted to add that you

> should give

> > > > serious consideration to that transplant. Whether you do it or not,

> give it

> > > > every chance when deciding. You have a beautiful grandson who would

> so

> > > > desperately miss his Grandpa, and I'd be willing to bet your daughter

> would

> > > > sure miss you too! Sometimes, bad things happen to good people so

> they can

> > > > reacess their lives and make fresh starts.

> > > >

> > > > I'm praying for you Dave!

> > > >

> > > >

> > > > Warm Hugs........ ...

> > > >

> > > > Di

> > > > http://auntdisexper imentallife. blogspot. com/

> > > >

> > > > ____________ _________ _________ __

> > > > From: dave dodds <daveliltoe@ yahoo. com>

> > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > Sent: Sunday, September 13, 2009 6:13:15 PM

> > > > Subject: Re: (unknown)

> > > >

> > > >

> > > > Diane, this is one of my biggest problems. I do not have a strong

> belief

> > > > in the here after, religion, etc. I do not want to offend those that

> do. I

> > > > wish I did, but I don't. I see how much it helps people, but I have

> not

> > > > been able to grasp the concept. I come from a family that both

> parents were

> > > > strong believers and they took me to church regularly. I don't know

> why I

> > > > have had such a hard time with faith. I am not of the belief that the

> world

> > > > happened in a vacuum. There is a degree of spirituality in me. I'm

> sure

> > > > you don't want me to go into the usual talk of why bad things happen

> to good

> > > > people and good things happen to bad people. I just am unable to

> square the

> > > > suffering people endure with the idea of God having his hand on the

> > > > throttle, so to speak. I hope I have not offended you or anyone. I

> admire

> > > > your ability to believe without question. I know there is a force of

> good

> > > > in the universe, and certainly a evil in the

> > > > universe. I know it would help me if I had your faith, but it avoids

> me or

> > > > I avoid it. Whichever way it is, the outcome for me is the same, lack

> of

> > > > faith for which I, in the end, pay the price.

> > > > Dave

> > > >

> > > > ____________ _________ _________ __

> > > > From: diane chandler <dianechandler@ att.net>

> > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > Sent: Sunday, September 13, 2009 5:28:49 PM

> > > > Subject: Re: (unknown)

> > > >

> > > >

> > > > Hi Dave,

> > > >

> > > > No, Terry opted not to try for a transplant. He had been at death's

> door a

> > > > couple of times prior to even knowing about his liver disease. He

> felt much

> > > > more peaceful about death than dealing with life after a transplant.

> Also,

> > > > he had a genetic disorder that predisposed him to liver disease. He

> thought

> > > > it would be selfish of him to ask for a donor liver, knowing his body

> would

> > > > begin attacking it as soon as it was transplanted, when so few are

> > > > available. It was so hard to sit by and watch him make that decision,

> but I

> > > > had watched Momma die of renal failure and had seen all she had gone

> through

> > > > with the dialysis and didn't want to emotionally force anything on

> Terry

> > > > that he wasn't ready to deal with. I told him I would support him

> fully in

> > > > whatever decision he made; if he chose to go for the transplant, I

> would be

> > > > there every step of the way but if not, I would also help him live

> his life

> > > > to the fullest until the time came for him to go home

> > > > with the Lord. As hard as it was to give him up, I did so knowing I

> had

> > > > done for him what his heart desired and loved him completely until

> Jesus

> > > > came for him.

> > > >

> > > > Now that I have cirrhosis as well, I am much in the same boat as

> > > > you. Terry and I had three children who never made it to this world.

> I

> > > > have two sisters and a niece and four nephews who love me dearly.

> However,

> > > > I am not comfortable asking them to take on the role of my caregiver

> as this

> > > > disease progresses. I know how hard that is on the loved one and I

> don't

> > > > want them to have to go through that. I have already started checking

> in to

> > > > in-patient hospice care for when that time comes. Whether I will

> consider a

> > > > transplant or not is something I haven't really even thought about

> yet. I

> > > > pray about it and just ask the Lord to help me make the right

> decision when

> > > > the time comes.

> > > >

> > > > Whatever decision you make, please know that I am praying for you. I

> do

> > > > not look forward to dealing with this disease, but I also don't allow

> myself

> > > > to worry about it. I simply leave it with the Lord and know He

> already has

> > > > a plan and all I have to do is submit myself to His will and plan for

> my

> > > > life. My faith carries me through this, just as it has through so

> many

> > > > other areas of my life.

> > > >

> > > > Warm Hugs........ ...

> > > >

> > > > Di

> > > > http://auntdisexper imentallife. blogspot. com/

> > > >

> > > > ____________ _________ _________ __

> > > > From: dave dodds <daveliltoe@ yahoo. com>

> > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > Sent: Sunday, September 13, 2009 5:05:45 PM

> > > > Subject: Re: (unknown)

> > > >

> > > >

> > > > Thanks for writing back Diane..And I am sorry you had to go through

> this

> > > > with your husband...I know from dealing with close friends and family

> how

> > > > difficult a progressive fatal disease is on the caregiver and others

> > > > close..if I may ask, did your husband have a transplant? I am

> wrestling

> > > > with that decision when it comes, and whether to put myself and

> family

> > > > through that. I don't really have someone I can move in with during

> the

> > > > recovery process, and would not put that burden on my daughter and

> her

> > > > significant other. For one there is not room in her house, except a

> > > > finished basement, and I don't see how someone could negotiate the

> stairs in

> > > > that condition. For another reason her relationship is fragile I

> believe,

> > > > and that would certainly not help, and though we are civil, we really

> don't

> > > > care a lot for each other. I know some go into medical centers to

> > > > recuperate and I'm fine with that option, since likely the

> progression

> > > > either way will put

> > > > me into one, but I still have a lot of soul searching to do about a

> > > > transplant. Dave

> > > >

> > > > ____________ _________ _________ __

> > > > From: diane chandler <dianechandler@ att.net>

> > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > Sent: Sunday, September 13, 2009 4:42:49 PM

> > > > Subject: Re: (unknown)

> > > >

> > > >

> > > > Dave, I am so sorry. Dealing with this disease wears so quickly on

> your

> > > > nerves and makes you so sad, so often. Please know I am praying for

> you.

> > > > Do make that call to your doctor tomorrow morning, especially since

> this is

> > > > your first experience with the swelling in your extremities. Terry,

> my late

> > > > husband, used to swell so badly in his feet that he couldn't walk

> because

> > > > his feet would actually be rounded on the bottom and wouldn't flaten

> out,

> > > > even when he was fully weight-bearing. I cannot say I know what you

> are

> > > > going through from my personal experience, but I do know from having

> been

> > > > with Terry as he went through it. It is agonizing for you and for

> those who

> > > > love you. Again, I am so sorry that this has infringed upon your

> weekend

> > > > with your daughter and grandson. Please update us after you speak

> with your

> > > > doctor. My prayers are with you.

> > > >

> > > > Warm Hugs........ ...

> > > >

> > > > Di

> > > > http://auntdisexper imentallife. blogspot. com/

> > > >

> > > > ____________ _________ _________ __

> > > > From: dave dodds <daveliltoe@ yahoo. com>

> > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > Sent: Sunday, September 13, 2009 11:59:08 AM

> > > > Subject: (unknown)

> > > >

> > > >

> > > > I'm sorry I only seem to come here when things are bad, but seems

> they are

> > > > mostly that way now...what has always been a great weekend when my

> daughter

> > > > and grandson come up was full of agony for most of my visit...my

> legs, feet,

> > > > and ankles swelled up so bad I could hardly walk, and my feet hurt

> very

> > > > bad...finally this noon the swelling has mostly gone down..but I

> wonder for

> > > > how long? I should call my doc tomorrow, but I get weary of

> doc's...this is

> > > > a first in my journey of my feet and ankles swelling like this...I

> thought

> > > > the ascites was bad, but that is more horrific..walking is terrible

> and just

> > > > laying with my feet up to try and make the pain go away...and knowing

> things

> > > > will, only progress into being worse...

> > > > Dave

> > > >

> > > >

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Bobby, I am seeing my PCP tomorrow and no I haven't seen a hepatologist yet. I

will be returning to Vandy on Oct. 1 and I will ask my surgeon to refer me to

the Hep there.  The local GI didn't seem to think I needed that as yet.  I

didn't argue with him, I'll simply go around him!  I am going to discuss this

with my PCP tomorrow morning and ask him to order some labs, including ammonia

levels.  He is absolutely wonderful and will help me out until I can get that

referral to a Hepatologist at Vandy.  Thank you so much for your response and

the information.  I am so not ready to deal with this, but life is rarely about

what we are ready for, huh?!

 

Warm Hugs...........

 

Di

http://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

Sent: Tuesday, September 15, 2009 9:44:55 PM

Subject: Re: (unknown)

 

Yes, Diane. The answer is yes, you can have portal systemic encephalopathy in

the absence of other decompensations. Having it diagnosed early and treat might

prevent it from getting worse. You are already an expert on what will make it

better , or worse because of your loving husband. My hepatologist relies much on

anecdotal evidence in his clinic. It is so hard to notice sub clinical PSE, but

your loved ones will notice before any one else. Have you talked to the doctor

about this? BTW, have you seen a hepatiologist yet??

Love, Bobby

long life, old age, everything good-Apache prayer

____________ _________ _________ __

From: diane chandler <dianechandler@ att.net>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Monday, September 14, 2009 9:16:08 PM

Subject: Re: (unknown)

My sister mentioned to me today that she is concerned about me because it seems

like I'm confused a lot lately. I'm a bit concerned about that. As far as I

know, I don't have any decompensating affects from the cirrhosis. Could

encephalopathy occur in the absence of other decompensating factors? I have an

appointment with my PCP on Wednesday and suppose I should tell him what my

sister said, huh?

Warm Hugs........ ...

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: Jill <jillkstewart@ yahoo.com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Monday, September 14, 2009 9:04:50 PM

Subject: Re: (unknown)

it's okay, i knew who you were talking to! LOL!!!!

Love,Jill

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

> wow, you don't let cirrhosis occupy your mind much? Tell me how to

> accomplish that?

>

>

>

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 10:10:30 PM

> Subject: Re: (unknown)

>

>

> Yes, Dave, Hospice care is for the end-of-life and is something you

> shouldn't consider until you have made your decision regarding

> transplant. Give it much thought and consideration, both for yourself and

> your grandson.

>

> None of us knows the number of our days. We walk about every day living

> like we think we will live forever; but the truth is that any of us could go

> within the next minute. I don't allow the thought that I have cirrhosis to

> occupy too much of my time. I live my life and try my best to take care of

> myself. When my time comes, it comes; end of story. I'm not a fatalist,

> just a realist.

>

> I am always here if you need a friend or an ear to listen. I can't hide my

> faith, but I won't shove it down your throat either. Good luck with the

> call to your doctor tomorrow!

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 6:57:15 PM

> Subject: Re: (unknown)

>

>

> Diane, thanks for the moral support, and for praying for me. I guess you

> could say, Lord knows I need it. What you were saying about my grandson is

> very true. His Grandmother, my X, is very sick also. He could easily lose

> out on knowing either of us well. He just turned two. My circumstances are

> so much better than some that it annoys me I get on so much self-pity. I

> could, when time comes, look into hospice. I think hospice is for the last

> 6 months. I may be wrong, though. I don't know how far away I am from

> needing a transplant yet. Several doc's gave me 5 yrs. a little less than 4

> yrs. ago. My liver doc would not give me a length, saying he does nor

> forecast the future. I appreciated him for that answer, and the others for

> their honesty. As they say be careful what you ask. I kind of wish now,

> when I asked, the other's would not have told me. I am sure they were going

> by percentage's giving my symptoms. If they

> were correct I am about 16 months away. As I have often thought, since

> their prediction, very few really know how long they have or how they will

> go. Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 6:23:35 PM

> Subject: Re: (unknown)

>

>

> Dave, you have in no way offended me. To say that have faith, without

> question, is certainly far from reality. I have come to a place in my life

> where I rarely allow myself to question God; that has not always been so. I

> struggled with my faith for many, many years through some terribly difficult

> circumstances. I hope I won't offend you by saying I will pray for you and

> ask you not to give up on God. He hasn't given up on you.

>

> That being said, I do honestly care about you and about what you are going

> through. Cirrhosis is hard, just plain HARD. Every day is a journey into

> the unknown and leads us down paths we never dreamed we would have to walk.

> Uncertainly and depression are familiar friends. I do so hope your doctor

> can help you with the edema. BTW, I just wanted to add that you should give

> serious consideration to that transplant. Whether you do it or not, give it

> every chance when deciding. You have a beautiful grandson who would so

> desperately miss his Grandpa, and I'd be willing to bet your daughter would

> sure miss you too! Sometimes, bad things happen to good people so they can

> reacess their lives and make fresh starts.

>

> I'm praying for you Dave!

>

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 6:13:15 PM

> Subject: Re: (unknown)

>

>

> Diane, this is one of my biggest problems. I do not have a strong belief

> in the here after, religion, etc. I do not want to offend those that do. I

> wish I did, but I don't. I see how much it helps people, but I have not

> been able to grasp the concept. I come from a family that both parents were

> strong believers and they took me to church regularly. I don't know why I

> have had such a hard time with faith. I am not of the belief that the world

> happened in a vacuum. There is a degree of spirituality in me. I'm sure

> you don't want me to go into the usual talk of why bad things happen to good

> people and good things happen to bad people. I just am unable to square the

> suffering people endure with the idea of God having his hand on the

> throttle, so to speak. I hope I have not offended you or anyone. I admire

> your ability to believe without question. I know there is a force of good

> in the universe, and certainly a evil in the

> universe. I know it would help me if I had your faith, but it avoids me or

> I avoid it. Whichever way it is, the outcome for me is the same, lack of

> faith for which I, in the end, pay the price.

> Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 5:28:49 PM

> Subject: Re: (unknown)

>

>

> Hi Dave,

>

> No, Terry opted not to try for a transplant. He had been at death's door a

> couple of times prior to even knowing about his liver disease. He felt much

> more peaceful about death than dealing with life after a transplant. Also,

> he had a genetic disorder that predisposed him to liver disease. He thought

> it would be selfish of him to ask for a donor liver, knowing his body would

> begin attacking it as soon as it was transplanted, when so few are

> available. It was so hard to sit by and watch him make that decision, but I

> had watched Momma die of renal failure and had seen all she had gone through

> with the dialysis and didn't want to emotionally force anything on Terry

> that he wasn't ready to deal with. I told him I would support him fully in

> whatever decision he made; if he chose to go for the transplant, I would be

> there every step of the way but if not, I would also help him live his life

> to the fullest until the time came for him to go home

> with the Lord. As hard as it was to give him up, I did so knowing I had

> done for him what his heart desired and loved him completely until Jesus

> came for him.

>

> Now that I have cirrhosis as well, I am much in the same boat as

> you. Terry and I had three children who never made it to this world. I

> have two sisters and a niece and four nephews who love me dearly. However,

> I am not comfortable asking them to take on the role of my caregiver as this

> disease progresses. I know how hard that is on the loved one and I don't

> want them to have to go through that. I have already started checking in to

> in-patient hospice care for when that time comes. Whether I will consider a

> transplant or not is something I haven't really even thought about yet. I

> pray about it and just ask the Lord to help me make the right decision when

> the time comes.

>

> Whatever decision you make, please know that I am praying for you. I do

> not look forward to dealing with this disease, but I also don't allow myself

> to worry about it. I simply leave it with the Lord and know He already has

> a plan and all I have to do is submit myself to His will and plan for my

> life. My faith carries me through this, just as it has through so many

> other areas of my life.

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 5:05:45 PM

> Subject: Re: (unknown)

>

>

> Thanks for writing back Diane..And I am sorry you had to go through this

> with your husband...I know from dealing with close friends and family how

> difficult a progressive fatal disease is on the caregiver and others

> close..if I may ask, did your husband have a transplant? I am wrestling

> with that decision when it comes, and whether to put myself and family

> through that. I don't really have someone I can move in with during the

> recovery process, and would not put that burden on my daughter and her

> significant other. For one there is not room in her house, except a

> finished basement, and I don't see how someone could negotiate the stairs in

> that condition. For another reason her relationship is fragile I believe,

> and that would certainly not help, and though we are civil, we really don't

> care a lot for each other. I know some go into medical centers to

> recuperate and I'm fine with that option, since likely the progression

> either way will put

> me into one, but I still have a lot of soul searching to do about a

> transplant. Dave

>

> ____________ _________ _________ __

> From: diane chandler <dianechandler@ att.net>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 4:42:49 PM

> Subject: Re: (unknown)

>

>

> Dave, I am so sorry. Dealing with this disease wears so quickly on your

> nerves and makes you so sad, so often. Please know I am praying for you.

> Do make that call to your doctor tomorrow morning, especially since this is

> your first experience with the swelling in your extremities. Terry, my late

> husband, used to swell so badly in his feet that he couldn't walk because

> his feet would actually be rounded on the bottom and wouldn't flaten out,

> even when he was fully weight-bearing. I cannot say I know what you are

> going through from my personal experience, but I do know from having been

> with Terry as he went through it. It is agonizing for you and for those who

> love you. Again, I am so sorry that this has infringed upon your weekend

> with your daughter and grandson. Please update us after you speak with your

> doctor. My prayers are with you.

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

> ____________ _________ _________ __

> From: dave dodds <daveliltoe@ yahoo. com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Sunday, September 13, 2009 11:59:08 AM

> Subject: (unknown)

>

>

> I'm sorry I only seem to come here when things are bad, but seems they are

> mostly that way now...what has always been a great weekend when my daughter

> and grandson come up was full of agony for most of my visit...my legs, feet,

> and ankles swelled up so bad I could hardly walk, and my feet hurt very

> bad...finally this noon the swelling has mostly gone down..but I wonder for

> how long? I should call my doc tomorrow, but I get weary of doc's...this is

> a first in my journey of my feet and ankles swelling like this...I thought

> the ascites was bad, but that is more horrific..walking is terrible and just

> laying with my feet up to try and make the pain go away...and knowing things

> will, only progress into being worse...

> Dave

>

>

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While I love you dearly and have always wanted a brother, I couldn' trade one of

my sisters!!!  ;)  They are both so precious to me and have taken such wonderful

care of me since Terry's home going.  I don't know what I would do without

either one of them!

Thank you for the compliments!  I have been so neglectful with regards to

posting on the blog.  I miss it and want to get back to it, but just don't have

the energy right now.

 

Warm Hugs...........

 

Di

http://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

Sent: Tuesday, September 15, 2009 10:52:07 PM

Subject: Re: (unknown)

 

Diane, I had never checked out your blog. You really have a lot on there,

wasn't able to see everything in one lookysee. I was right, you are

elegant, at least when you dress up for pictures. lol You and your sisters

really look alike. I never had a sister, I am jealous. Can we trade, I

will give you one or both of my brothers for one of your sisters. Jan H

On Tue, Sep 15, 2009 at 8:27 PM, diane chandler <dianechandler@ att.net>wrote:

> It was just a checkup. I have this blockage in the branch of an artery

> that cannot be stented, so we have to keep a watch on it just to be sure we

> don't let it go too far without doing the surgery. I will do the surgery if

> it becomes absolutely necessary, but not until. I am in no hurry to have

> heart surgery!

>

> Glad you found out what was going on with the new GI and that you feel

> better about the wait. Praying he and his family are okay and that he can

> see Bobby Glen very soon. Love ya sweetie!

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

>

>

>

> ____________ _________ _________ __

> From: pinkmeetsblue <pinkmeetsblue@ yahoo.com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Tuesday, September 15, 2009 5:21:21 PM

> Subject: Re: (unknown)

>

>

> theres that cardio word again,are you just going for a check up,or are you

> having issues with your heart??? i would never want to scare you toots! just

> trying to be helpful,we are still awaiting to here from dr. about the new gi

> ,i called today and found out hes been out of the office this week ,family

> emergency,so that explains it, dr. douglas is one of the best most

> compassinate dr. i know and always does what he says he will, so know i feel

> bad that i was upset cause of no call yesterday or today. but he will be in

> tommorrow phew. praying for him and his family and hoping everything is ok

> with him and his.love ya babe!

> > >

> > > > wow, you don't let cirrhosis occupy your mind much? Tell me how to

> > > > accomplish that?

> > > >

> > > >

> > > >

> > > >

> > > > ____________ _________ _________ __

> > > > From: diane chandler <dianechandler@ att.net>

> > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > Sent: Sunday, September 13, 2009 10:10:30 PM

> > > > Subject: Re: (unknown)

> > > >

> > > >

> > > > Yes, Dave, Hospice care is for the end-of-life and is something you

> > > > shouldn't consider until you have made your decision regarding

> > > > transplant. Give it much thought and consideration, both for yourself

> and

> > > > your grandson.

> > > >

> > > > None of us knows the number of our days. We walk about every day

> living

> > > > like we think we will live forever; but the truth is that any of us

> could go

> > > > within the next minute. I don't allow the thought that I have

> cirrhosis to

> > > > occupy too much of my time. I live my life and try my best to take

> care of

> > > > myself. When my time comes, it comes; end of story. I'm not a

> fatalist,

> > > > just a realist.

> > > >

> > > > I am always here if you need a friend or an ear to listen. I can't

> hide my

> > > > faith, but I won't shove it down your throat either. Good luck with

> the

> > > > call to your doctor tomorrow!

> > > >

> > > > Warm Hugs........ ...

> > > >

> > > > Di

> > > > http://auntdisexper imentallife. blogspot. com/

> > > >

> > > > ____________ _________ _________ __

> > > > From: dave dodds <daveliltoe@ yahoo. com>

> > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > Sent: Sunday, September 13, 2009 6:57:15 PM

> > > > Subject: Re: (unknown)

> > > >

> > > >

> > > > Diane, thanks for the moral support, and for praying for me. I guess

> you

> > > > could say, Lord knows I need it. What you were saying about my

> grandson is

> > > > very true. His Grandmother, my X, is very sick also. He could easily

> lose

> > > > out on knowing either of us well. He just turned two. My

> circumstances are

> > > > so much better than some that it annoys me I get on so much

> self-pity. I

> > > > could, when time comes, look into hospice. I think hospice is for the

> last

> > > > 6 months. I may be wrong, though. I don't know how far away I am from

> > > > needing a transplant yet. Several doc's gave me 5 yrs. a little less

> than 4

> > > > yrs. ago. My liver doc would not give me a length, saying he does nor

> > > > forecast the future. I appreciated him for that answer, and the

> others for

> > > > their honesty. As they say be careful what you ask. I kind of wish

> now,

> > > > when I asked, the other's would not have told me. I am sure they were

> going

> > > > by percentage's giving my symptoms. If they

> > > > were correct I am about 16 months away. As I have often thought,

> since

> > > > their prediction, very few really know how long they have or how they

> will

> > > > go. Dave

> > > >

> > > > ____________ _________ _________ __

> > > > From: diane chandler <dianechandler@ att.net>

> > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > Sent: Sunday, September 13, 2009 6:23:35 PM

> > > > Subject: Re: (unknown)

> > > >

> > > >

> > > > Dave, you have in no way offended me. To say that have faith, without

> > > > question, is certainly far from reality. I have come to a place in my

> life

> > > > where I rarely allow myself to question God; that has not always been

> so. I

> > > > struggled with my faith for many, many years through some terribly

> difficult

> > > > circumstances. I hope I won't offend you by saying I will pray for

> you and

> > > > ask you not to give up on God. He hasn't given up on you.

> > > >

> > > > That being said, I do honestly care about you and about what you are

> going

> > > > through. Cirrhosis is hard, just plain HARD. Every day is a journey

> into

> > > > the unknown and leads us down paths we never dreamed we would have to

> walk.

> > > > Uncertainly and depression are familiar friends. I do so hope your

> doctor

> > > > can help you with the edema. BTW, I just wanted to add that you

> should give

> > > > serious consideration to that transplant. Whether you do it or not,

> give it

> > > > every chance when deciding. You have a beautiful grandson who would

> so

> > > > desperately miss his Grandpa, and I'd be willing to bet your daughter

> would

> > > > sure miss you too! Sometimes, bad things happen to good people so

> they can

> > > > reacess their lives and make fresh starts.

> > > >

> > > > I'm praying for you Dave!

> > > >

> > > >

> > > > Warm Hugs........ ...

> > > >

> > > > Di

> > > > http://auntdisexper imentallife. blogspot. com/

> > > >

> > > > ____________ _________ _________ __

> > > > From: dave dodds <daveliltoe@ yahoo. com>

> > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > Sent: Sunday, September 13, 2009 6:13:15 PM

> > > > Subject: Re: (unknown)

> > > >

> > > >

> > > > Diane, this is one of my biggest problems. I do not have a strong

> belief

> > > > in the here after, religion, etc. I do not want to offend those that

> do. I

> > > > wish I did, but I don't. I see how much it helps people, but I have

> not

> > > > been able to grasp the concept. I come from a family that both

> parents were

> > > > strong believers and they took me to church regularly. I don't know

> why I

> > > > have had such a hard time with faith. I am not of the belief that the

> world

> > > > happened in a vacuum. There is a degree of spirituality in me. I'm

> sure

> > > > you don't want me to go into the usual talk of why bad things happen

> to good

> > > > people and good things happen to bad people. I just am unable to

> square the

> > > > suffering people endure with the idea of God having his hand on the

> > > > throttle, so to speak. I hope I have not offended you or anyone. I

> admire

> > > > your ability to believe without question. I know there is a force of

> good

> > > > in the universe, and certainly a evil in the

> > > > universe. I know it would help me if I had your faith, but it avoids

> me or

> > > > I avoid it. Whichever way it is, the outcome for me is the same, lack

> of

> > > > faith for which I, in the end, pay the price.

> > > > Dave

> > > >

> > > > ____________ _________ _________ __

> > > > From: diane chandler <dianechandler@ att.net>

> > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > Sent: Sunday, September 13, 2009 5:28:49 PM

> > > > Subject: Re: (unknown)

> > > >

> > > >

> > > > Hi Dave,

> > > >

> > > > No, Terry opted not to try for a transplant. He had been at death's

> door a

> > > > couple of times prior to even knowing about his liver disease. He

> felt much

> > > > more peaceful about death than dealing with life after a transplant.

> Also,

> > > > he had a genetic disorder that predisposed him to liver disease. He

> thought

> > > > it would be selfish of him to ask for a donor liver, knowing his body

> would

> > > > begin attacking it as soon as it was transplanted, when so few are

> > > > available. It was so hard to sit by and watch him make that decision,

> but I

> > > > had watched Momma die of renal failure and had seen all she had gone

> through

> > > > with the dialysis and didn't want to emotionally force anything on

> Terry

> > > > that he wasn't ready to deal with. I told him I would support him

> fully in

> > > > whatever decision he made; if he chose to go for the transplant, I

> would be

> > > > there every step of the way but if not, I would also help him live

> his life

> > > > to the fullest until the time came for him to go home

> > > > with the Lord. As hard as it was to give him up, I did so knowing I

> had

> > > > done for him what his heart desired and loved him completely until

> Jesus

> > > > came for him.

> > > >

> > > > Now that I have cirrhosis as well, I am much in the same boat as

> > > > you. Terry and I had three children who never made it to this world.

> I

> > > > have two sisters and a niece and four nephews who love me dearly.

> However,

> > > > I am not comfortable asking them to take on the role of my caregiver

> as this

> > > > disease progresses. I know how hard that is on the loved one and I

> don't

> > > > want them to have to go through that. I have already started checking

> in to

> > > > in-patient hospice care for when that time comes. Whether I will

> consider a

> > > > transplant or not is something I haven't really even thought about

> yet. I

> > > > pray about it and just ask the Lord to help me make the right

> decision when

> > > > the time comes.

> > > >

> > > > Whatever decision you make, please know that I am praying for you. I

> do

> > > > not look forward to dealing with this disease, but I also don't allow

> myself

> > > > to worry about it. I simply leave it with the Lord and know He

> already has

> > > > a plan and all I have to do is submit myself to His will and plan for

> my

> > > > life. My faith carries me through this, just as it has through so

> many

> > > > other areas of my life.

> > > >

> > > > Warm Hugs........ ...

> > > >

> > > > Di

> > > > http://auntdisexper imentallife. blogspot. com/

> > > >

> > > > ____________ _________ _________ __

> > > > From: dave dodds <daveliltoe@ yahoo. com>

> > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > Sent: Sunday, September 13, 2009 5:05:45 PM

> > > > Subject: Re: (unknown)

> > > >

> > > >

> > > > Thanks for writing back Diane..And I am sorry you had to go through

> this

> > > > with your husband...I know from dealing with close friends and family

> how

> > > > difficult a progressive fatal disease is on the caregiver and others

> > > > close..if I may ask, did your husband have a transplant? I am

> wrestling

> > > > with that decision when it comes, and whether to put myself and

> family

> > > > through that. I don't really have someone I can move in with during

> the

> > > > recovery process, and would not put that burden on my daughter and

> her

> > > > significant other. For one there is not room in her house, except a

> > > > finished basement, and I don't see how someone could negotiate the

> stairs in

> > > > that condition. For another reason her relationship is fragile I

> believe,

> > > > and that would certainly not help, and though we are civil, we really

> don't

> > > > care a lot for each other. I know some go into medical centers to

> > > > recuperate and I'm fine with that option, since likely the

> progression

> > > > either way will put

> > > > me into one, but I still have a lot of soul searching to do about a

> > > > transplant. Dave

> > > >

> > > > ____________ _________ _________ __

> > > > From: diane chandler <dianechandler@ att.net>

> > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > Sent: Sunday, September 13, 2009 4:42:49 PM

> > > > Subject: Re: (unknown)

> > > >

> > > >

> > > > Dave, I am so sorry. Dealing with this disease wears so quickly on

> your

> > > > nerves and makes you so sad, so often. Please know I am praying for

> you.

> > > > Do make that call to your doctor tomorrow morning, especially since

> this is

> > > > your first experience with the swelling in your extremities. Terry,

> my late

> > > > husband, used to swell so badly in his feet that he couldn't walk

> because

> > > > his feet would actually be rounded on the bottom and wouldn't flaten

> out,

> > > > even when he was fully weight-bearing. I cannot say I know what you

> are

> > > > going through from my personal experience, but I do know from having

> been

> > > > with Terry as he went through it. It is agonizing for you and for

> those who

> > > > love you. Again, I am so sorry that this has infringed upon your

> weekend

> > > > with your daughter and grandson. Please update us after you speak

> with your

> > > > doctor. My prayers are with you.

> > > >

> > > > Warm Hugs........ ...

> > > >

> > > > Di

> > > > http://auntdisexper imentallife. blogspot. com/

> > > >

> > > > ____________ _________ _________ __

> > > > From: dave dodds <daveliltoe@ yahoo. com>

> > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > Sent: Sunday, September 13, 2009 11:59:08 AM

> > > > Subject: (unknown)

> > > >

> > > >

> > > > I'm sorry I only seem to come here when things are bad, but seems

> they are

> > > > mostly that way now...what has always been a great weekend when my

> daughter

> > > > and grandson come up was full of agony for most of my visit...my

> legs, feet,

> > > > and ankles swelled up so bad I could hardly walk, and my feet hurt

> very

> > > > bad...finally this noon the swelling has mostly gone down..but I

> wonder for

> > > > how long? I should call my doc tomorrow, but I get weary of

> doc's...this is

> > > > a first in my journey of my feet and ankles swelling like this...I

> thought

> > > > the ascites was bad, but that is more horrific..walking is terrible

> and just

> > > > laying with my feet up to try and make the pain go away...and knowing

> things

> > > > will, only progress into being worse...

> > > > Dave

> > > >

> > > >

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Diane - I have a friend who is like a sister, actually two separate

friendships which are like sisters. I wouldn't trade them either. I am

still willing to give you one of my brothers, and you can have the other

one's wife too. But, I guess my mother wouldn't like that since he is the

one who lives closest to her. The other brother does call me when he thinks

I might die, such as after my bypass. He called at least every week for a

couple of months, then went to monthly, now it has been once I think since

the first of the year. Makes me think I will probably live for awhile.

lol Jan H

On Tue, Sep 15, 2009 at 9:10 PM, diane chandler wrote:

> While I love you dearly and have always wanted a brother, I couldn' trade

> one of my sisters!!! ;) They are both so precious to me and have taken

> such wonderful care of me since Terry's home going. I don't know what I

> would do without either one of them!

>

> Thank you for the compliments! I have been so neglectful with regards to

> posting on the blog. I miss it and want to get back to it, but just don't

> have the energy right now.

>

> Warm Hugs...........

>

> Di

> http://auntdisexperimentallife.blogspot.com/

>

>

>

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Tuesday, September 15, 2009 10:52:07 PM

> Subject: Re: (unknown)

>

>

> Diane, I had never checked out your blog. You really have a lot on there,

> wasn't able to see everything in one lookysee. I was right, you are

> elegant, at least when you dress up for pictures. lol You and your sisters

> really look alike. I never had a sister, I am jealous. Can we trade, I

> will give you one or both of my brothers for one of your sisters. Jan H

>

> On Tue, Sep 15, 2009 at 8:27 PM, diane chandler <dianechandler@ att.net

> >wrote:

>

> > It was just a checkup. I have this blockage in the branch of an artery

> > that cannot be stented, so we have to keep a watch on it just to be sure

> we

> > don't let it go too far without doing the surgery. I will do the surgery

> if

> > it becomes absolutely necessary, but not until. I am in no hurry to have

> > heart surgery!

> >

> > Glad you found out what was going on with the new GI and that you feel

> > better about the wait. Praying he and his family are okay and that he can

> > see Bobby Glen very soon. Love ya sweetie!

> >

> > Warm Hugs........ ...

> >

> > Di

> > http://auntdisexper imentallife. blogspot. com/

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: pinkmeetsblue <pinkmeetsblue@ yahoo.com>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Tuesday, September 15, 2009 5:21:21 PM

> > Subject: Re: (unknown)

> >

> >

> > theres that cardio word again,are you just going for a check up,or are

> you

> > having issues with your heart??? i would never want to scare you toots!

> just

> > trying to be helpful,we are still awaiting to here from dr. about the new

> gi

> > ,i called today and found out hes been out of the office this week

> ,family

> > emergency,so that explains it, dr. douglas is one of the best most

> > compassinate dr. i know and always does what he says he will, so know i

> feel

> > bad that i was upset cause of no call yesterday or today. but he will be

> in

> > tommorrow phew. praying for him and his family and hoping everything is

> ok

> > with him and his.love ya babe!

> > > >

> > > > > wow, you don't let cirrhosis occupy your mind much? Tell me how to

> > > > > accomplish that?

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > ____________ _________ _________ __

> > > > > From: diane chandler <dianechandler@ att.net>

> > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > Sent: Sunday, September 13, 2009 10:10:30 PM

> > > > > Subject: Re: (unknown)

> > > > >

> > > > >

> > > > > Yes, Dave, Hospice care is for the end-of-life and is something you

> > > > > shouldn't consider until you have made your decision regarding

> > > > > transplant. Give it much thought and consideration, both for

> yourself

> > and

> > > > > your grandson.

> > > > >

> > > > > None of us knows the number of our days. We walk about every day

> > living

> > > > > like we think we will live forever; but the truth is that any of us

> > could go

> > > > > within the next minute. I don't allow the thought that I have

> > cirrhosis to

> > > > > occupy too much of my time. I live my life and try my best to take

> > care of

> > > > > myself. When my time comes, it comes; end of story. I'm not a

> > fatalist,

> > > > > just a realist.

> > > > >

> > > > > I am always here if you need a friend or an ear to listen. I can't

> > hide my

> > > > > faith, but I won't shove it down your throat either. Good luck with

> > the

> > > > > call to your doctor tomorrow!

> > > > >

> > > > > Warm Hugs........ ...

> > > > >

> > > > > Di

> > > > > http://auntdisexper imentallife. blogspot. com/

> > > > >

> > > > > ____________ _________ _________ __

> > > > > From: dave dodds <daveliltoe@ yahoo. com>

> > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > Sent: Sunday, September 13, 2009 6:57:15 PM

> > > > > Subject: Re: (unknown)

> > > > >

> > > > >

> > > > > Diane, thanks for the moral support, and for praying for me. I

> guess

> > you

> > > > > could say, Lord knows I need it. What you were saying about my

> > grandson is

> > > > > very true. His Grandmother, my X, is very sick also. He could

> easily

> > lose

> > > > > out on knowing either of us well. He just turned two. My

> > circumstances are

> > > > > so much better than some that it annoys me I get on so much

> > self-pity. I

> > > > > could, when time comes, look into hospice. I think hospice is for

> the

> > last

> > > > > 6 months. I may be wrong, though. I don't know how far away I am

> from

> > > > > needing a transplant yet. Several doc's gave me 5 yrs. a little

> less

> > than 4

> > > > > yrs. ago. My liver doc would not give me a length, saying he does

> nor

> > > > > forecast the future. I appreciated him for that answer, and the

> > others for

> > > > > their honesty. As they say be careful what you ask. I kind of wish

> > now,

> > > > > when I asked, the other's would not have told me. I am sure they

> were

> > going

> > > > > by percentage's giving my symptoms. If they

> > > > > were correct I am about 16 months away. As I have often thought,

> > since

> > > > > their prediction, very few really know how long they have or how

> they

> > will

> > > > > go. Dave

> > > > >

> > > > > ____________ _________ _________ __

> > > > > From: diane chandler <dianechandler@ att.net>

> > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > Sent: Sunday, September 13, 2009 6:23:35 PM

> > > > > Subject: Re: (unknown)

> > > > >

> > > > >

> > > > > Dave, you have in no way offended me. To say that have faith,

> without

> > > > > question, is certainly far from reality. I have come to a place in

> my

> > life

> > > > > where I rarely allow myself to question God; that has not always

> been

> > so. I

> > > > > struggled with my faith for many, many years through some terribly

> > difficult

> > > > > circumstances. I hope I won't offend you by saying I will pray for

> > you and

> > > > > ask you not to give up on God. He hasn't given up on you.

> > > > >

> > > > > That being said, I do honestly care about you and about what you

> are

> > going

> > > > > through. Cirrhosis is hard, just plain HARD. Every day is a journey

> > into

> > > > > the unknown and leads us down paths we never dreamed we would have

> to

> > walk.

> > > > > Uncertainly and depression are familiar friends. I do so hope your

> > doctor

> > > > > can help you with the edema. BTW, I just wanted to add that you

> > should give

> > > > > serious consideration to that transplant. Whether you do it or not,

> > give it

> > > > > every chance when deciding. You have a beautiful grandson who would

> > so

> > > > > desperately miss his Grandpa, and I'd be willing to bet your

> daughter

> > would

> > > > > sure miss you too! Sometimes, bad things happen to good people so

> > they can

> > > > > reacess their lives and make fresh starts.

> > > > >

> > > > > I'm praying for you Dave!

> > > > >

> > > > >

> > > > > Warm Hugs........ ...

> > > > >

> > > > > Di

> > > > > http://auntdisexper imentallife. blogspot. com/

> > > > >

> > > > > ____________ _________ _________ __

> > > > > From: dave dodds <daveliltoe@ yahoo. com>

> > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > Sent: Sunday, September 13, 2009 6:13:15 PM

> > > > > Subject: Re: (unknown)

> > > > >

> > > > >

> > > > > Diane, this is one of my biggest problems. I do not have a strong

> > belief

> > > > > in the here after, religion, etc. I do not want to offend those

> that

> > do. I

> > > > > wish I did, but I don't. I see how much it helps people, but I have

> > not

> > > > > been able to grasp the concept. I come from a family that both

> > parents were

> > > > > strong believers and they took me to church regularly. I don't know

> > why I

> > > > > have had such a hard time with faith. I am not of the belief that

> the

> > world

> > > > > happened in a vacuum. There is a degree of spirituality in me. I'm

> > sure

> > > > > you don't want me to go into the usual talk of why bad things

> happen

> > to good

> > > > > people and good things happen to bad people. I just am unable to

> > square the

> > > > > suffering people endure with the idea of God having his hand on the

> > > > > throttle, so to speak. I hope I have not offended you or anyone. I

> > admire

> > > > > your ability to believe without question. I know there is a force

> of

> > good

> > > > > in the universe, and certainly a evil in the

> > > > > universe. I know it would help me if I had your faith, but it

> avoids

> > me or

> > > > > I avoid it. Whichever way it is, the outcome for me is the same,

> lack

> > of

> > > > > faith for which I, in the end, pay the price.

> > > > > Dave

> > > > >

> > > > > ____________ _________ _________ __

> > > > > From: diane chandler <dianechandler@ att.net>

> > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > Sent: Sunday, September 13, 2009 5:28:49 PM

> > > > > Subject: Re: (unknown)

> > > > >

> > > > >

> > > > > Hi Dave,

> > > > >

> > > > > No, Terry opted not to try for a transplant. He had been at death's

> > door a

> > > > > couple of times prior to even knowing about his liver disease. He

> > felt much

> > > > > more peaceful about death than dealing with life after a

> transplant.

> > Also,

> > > > > he had a genetic disorder that predisposed him to liver disease. He

> > thought

> > > > > it would be selfish of him to ask for a donor liver, knowing his

> body

> > would

> > > > > begin attacking it as soon as it was transplanted, when so few are

> > > > > available. It was so hard to sit by and watch him make that

> decision,

> > but I

> > > > > had watched Momma die of renal failure and had seen all she had

> gone

> > through

> > > > > with the dialysis and didn't want to emotionally force anything on

> > Terry

> > > > > that he wasn't ready to deal with. I told him I would support him

> > fully in

> > > > > whatever decision he made; if he chose to go for the transplant, I

> > would be

> > > > > there every step of the way but if not, I would also help him live

> > his life

> > > > > to the fullest until the time came for him to go home

> > > > > with the Lord. As hard as it was to give him up, I did so knowing I

> > had

> > > > > done for him what his heart desired and loved him completely until

> > Jesus

> > > > > came for him.

> > > > >

> > > > > Now that I have cirrhosis as well, I am much in the same boat as

> > > > > you. Terry and I had three children who never made it to this

> world.

> > I

> > > > > have two sisters and a niece and four nephews who love me dearly.

> > However,

> > > > > I am not comfortable asking them to take on the role of my

> caregiver

> > as this

> > > > > disease progresses. I know how hard that is on the loved one and I

> > don't

> > > > > want them to have to go through that. I have already started

> checking

> > in to

> > > > > in-patient hospice care for when that time comes. Whether I will

> > consider a

> > > > > transplant or not is something I haven't really even thought about

> > yet. I

> > > > > pray about it and just ask the Lord to help me make the right

> > decision when

> > > > > the time comes.

> > > > >

> > > > > Whatever decision you make, please know that I am praying for you.

> I

> > do

> > > > > not look forward to dealing with this disease, but I also don't

> allow

> > myself

> > > > > to worry about it. I simply leave it with the Lord and know He

> > already has

> > > > > a plan and all I have to do is submit myself to His will and plan

> for

> > my

> > > > > life. My faith carries me through this, just as it has through so

> > many

> > > > > other areas of my life.

> > > > >

> > > > > Warm Hugs........ ...

> > > > >

> > > > > Di

> > > > > http://auntdisexper imentallife. blogspot. com/

> > > > >

> > > > > ____________ _________ _________ __

> > > > > From: dave dodds <daveliltoe@ yahoo. com>

> > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > Sent: Sunday, September 13, 2009 5:05:45 PM

> > > > > Subject: Re: (unknown)

> > > > >

> > > > >

> > > > > Thanks for writing back Diane..And I am sorry you had to go through

> > this

> > > > > with your husband...I know from dealing with close friends and

> family

> > how

> > > > > difficult a progressive fatal disease is on the caregiver and

> others

> > > > > close..if I may ask, did your husband have a transplant? I am

> > wrestling

> > > > > with that decision when it comes, and whether to put myself and

> > family

> > > > > through that. I don't really have someone I can move in with during

> > the

> > > > > recovery process, and would not put that burden on my daughter and

> > her

> > > > > significant other. For one there is not room in her house, except a

> > > > > finished basement, and I don't see how someone could negotiate the

> > stairs in

> > > > > that condition. For another reason her relationship is fragile I

> > believe,

> > > > > and that would certainly not help, and though we are civil, we

> really

> > don't

> > > > > care a lot for each other. I know some go into medical centers to

> > > > > recuperate and I'm fine with that option, since likely the

> > progression

> > > > > either way will put

> > > > > me into one, but I still have a lot of soul searching to do about a

> > > > > transplant. Dave

> > > > >

> > > > > ____________ _________ _________ __

> > > > > From: diane chandler <dianechandler@ att.net>

> > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > Sent: Sunday, September 13, 2009 4:42:49 PM

> > > > > Subject: Re: (unknown)

> > > > >

> > > > >

> > > > > Dave, I am so sorry. Dealing with this disease wears so quickly on

> > your

> > > > > nerves and makes you so sad, so often. Please know I am praying for

> > you.

> > > > > Do make that call to your doctor tomorrow morning, especially since

> > this is

> > > > > your first experience with the swelling in your extremities. Terry,

> > my late

> > > > > husband, used to swell so badly in his feet that he couldn't walk

> > because

> > > > > his feet would actually be rounded on the bottom and wouldn't

> flaten

> > out,

> > > > > even when he was fully weight-bearing. I cannot say I know what you

> > are

> > > > > going through from my personal experience, but I do know from

> having

> > been

> > > > > with Terry as he went through it. It is agonizing for you and for

> > those who

> > > > > love you. Again, I am so sorry that this has infringed upon your

> > weekend

> > > > > with your daughter and grandson. Please update us after you speak

> > with your

> > > > > doctor. My prayers are with you.

> > > > >

> > > > > Warm Hugs........ ...

> > > > >

> > > > > Di

> > > > > http://auntdisexper imentallife. blogspot. com/

> > > > >

> > > > > ____________ _________ _________ __

> > > > > From: dave dodds <daveliltoe@ yahoo. com>

> > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > Sent: Sunday, September 13, 2009 11:59:08 AM

> > > > > Subject: (unknown)

> > > > >

> > > > >

> > > > > I'm sorry I only seem to come here when things are bad, but seems

> > they are

> > > > > mostly that way now...what has always been a great weekend when my

> > daughter

> > > > > and grandson come up was full of agony for most of my visit...my

> > legs, feet,

> > > > > and ankles swelled up so bad I could hardly walk, and my feet hurt

> > very

> > > > > bad...finally this noon the swelling has mostly gone down..but I

> > wonder for

> > > > > how long? I should call my doc tomorrow, but I get weary of

> > doc's...this is

> > > > > a first in my journey of my feet and ankles swelling like this...I

> > thought

> > > > > the ascites was bad, but that is more horrific..walking is terrible

> > and just

> > > > > laying with my feet up to try and make the pain go away...and

> knowing

> > things

> > > > > will, only progress into being worse...

> > > > > Dave

> > > > >

> > > > >

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Well, both of my sisters live in the same county as me, each about 15-20 minutes

away.  Do they call?  Rarely, unless it's for a specific purpose.  But, I do

know they love me and they do try their best to look out after me.  Usually, if

I speak to them, I'm the one that does the calling.  Oh well, that's not any

different than it always has been!  I'm the oldest and I'm the one who has

always kept things together.  BTW, I do so love your sense of humor!  If we

can't laugh about our life, we might as well be dead anyway, huh?!  LOL!!!!

 

Warm Hugs...........

 

Di

http://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

Sent: Wednesday, September 16, 2009 12:49:43 AM

Subject: Re: (unknown)

 

Diane - I have a friend who is like a sister, actually two separate

friendships which are like sisters. I wouldn't trade them either. I am

still willing to give you one of my brothers, and you can have the other

one's wife too. But, I guess my mother wouldn't like that since he is the

one who lives closest to her. The other brother does call me when he thinks

I might die, such as after my bypass. He called at least every week for a

couple of months, then went to monthly, now it has been once I think since

the first of the year. Makes me think I will probably live for awhile.

lol Jan H

On Tue, Sep 15, 2009 at 9:10 PM, diane chandler <dianechandler@ att.net>wrote:

> While I love you dearly and have always wanted a brother, I couldn' trade

> one of my sisters!!! ;) They are both so precious to me and have taken

> such wonderful care of me since Terry's home going. I don't know what I

> would do without either one of them!

>

> Thank you for the compliments! I have been so neglectful with regards to

> posting on the blog. I miss it and want to get back to it, but just don't

> have the energy right now.

>

> Warm Hugs........ ...

>

> Di

> http://auntdisexper imentallife. blogspot. com/

>

>

>

>

> ____________ _________ _________ __

> From: Jan Holman <janholmangmail (DOT) com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Tuesday, September 15, 2009 10:52:07 PM

> Subject: Re: (unknown)

>

>

> Diane, I had never checked out your blog. You really have a lot on there,

> wasn't able to see everything in one lookysee. I was right, you are

> elegant, at least when you dress up for pictures. lol You and your sisters

> really look alike. I never had a sister, I am jealous. Can we trade, I

> will give you one or both of my brothers for one of your sisters. Jan H

>

> On Tue, Sep 15, 2009 at 8:27 PM, diane chandler <dianechandler@ att.net

> >wrote:

>

> > It was just a checkup. I have this blockage in the branch of an artery

> > that cannot be stented, so we have to keep a watch on it just to be sure

> we

> > don't let it go too far without doing the surgery. I will do the surgery

> if

> > it becomes absolutely necessary, but not until. I am in no hurry to have

> > heart surgery!

> >

> > Glad you found out what was going on with the new GI and that you feel

> > better about the wait. Praying he and his family are okay and that he can

> > see Bobby Glen very soon. Love ya sweetie!

> >

> > Warm Hugs........ ...

> >

> > Di

> > http://auntdisexper imentallife. blogspot. com/

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: pinkmeetsblue <pinkmeetsblue@ yahoo.com>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Tuesday, September 15, 2009 5:21:21 PM

> > Subject: Re: (unknown)

> >

> >

> > theres that cardio word again,are you just going for a check up,or are

> you

> > having issues with your heart??? i would never want to scare you toots!

> just

> > trying to be helpful,we are still awaiting to here from dr. about the new

> gi

> > ,i called today and found out hes been out of the office this week

> ,family

> > emergency,so that explains it, dr. douglas is one of the best most

> > compassinate dr. i know and always does what he says he will, so know i

> feel

> > bad that i was upset cause of no call yesterday or today. but he will be

> in

> > tommorrow phew. praying for him and his family and hoping everything is

> ok

> > with him and his.love ya babe!

> > > >

> > > > > wow, you don't let cirrhosis occupy your mind much? Tell me how to

> > > > > accomplish that?

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > ____________ _________ _________ __

> > > > > From: diane chandler <dianechandler@ att.net>

> > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > Sent: Sunday, September 13, 2009 10:10:30 PM

> > > > > Subject: Re: (unknown)

> > > > >

> > > > >

> > > > > Yes, Dave, Hospice care is for the end-of-life and is something you

> > > > > shouldn't consider until you have made your decision regarding

> > > > > transplant. Give it much thought and consideration, both for

> yourself

> > and

> > > > > your grandson.

> > > > >

> > > > > None of us knows the number of our days. We walk about every day

> > living

> > > > > like we think we will live forever; but the truth is that any of us

> > could go

> > > > > within the next minute. I don't allow the thought that I have

> > cirrhosis to

> > > > > occupy too much of my time. I live my life and try my best to take

> > care of

> > > > > myself. When my time comes, it comes; end of story. I'm not a

> > fatalist,

> > > > > just a realist.

> > > > >

> > > > > I am always here if you need a friend or an ear to listen. I can't

> > hide my

> > > > > faith, but I won't shove it down your throat either. Good luck with

> > the

> > > > > call to your doctor tomorrow!

> > > > >

> > > > > Warm Hugs........ ...

> > > > >

> > > > > Di

> > > > > http://auntdisexper imentallife. blogspot. com/

> > > > >

> > > > > ____________ _________ _________ __

> > > > > From: dave dodds <daveliltoe@ yahoo. com>

> > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > Sent: Sunday, September 13, 2009 6:57:15 PM

> > > > > Subject: Re: (unknown)

> > > > >

> > > > >

> > > > > Diane, thanks for the moral support, and for praying for me. I

> guess

> > you

> > > > > could say, Lord knows I need it. What you were saying about my

> > grandson is

> > > > > very true. His Grandmother, my X, is very sick also. He could

> easily

> > lose

> > > > > out on knowing either of us well. He just turned two. My

> > circumstances are

> > > > > so much better than some that it annoys me I get on so much

> > self-pity. I

> > > > > could, when time comes, look into hospice. I think hospice is for

> the

> > last

> > > > > 6 months. I may be wrong, though. I don't know how far away I am

> from

> > > > > needing a transplant yet. Several doc's gave me 5 yrs. a little

> less

> > than 4

> > > > > yrs. ago. My liver doc would not give me a length, saying he does

> nor

> > > > > forecast the future. I appreciated him for that answer, and the

> > others for

> > > > > their honesty. As they say be careful what you ask. I kind of wish

> > now,

> > > > > when I asked, the other's would not have told me. I am sure they

> were

> > going

> > > > > by percentage's giving my symptoms. If they

> > > > > were correct I am about 16 months away. As I have often thought,

> > since

> > > > > their prediction, very few really know how long they have or how

> they

> > will

> > > > > go. Dave

> > > > >

> > > > > ____________ _________ _________ __

> > > > > From: diane chandler <dianechandler@ att.net>

> > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > Sent: Sunday, September 13, 2009 6:23:35 PM

> > > > > Subject: Re: (unknown)

> > > > >

> > > > >

> > > > > Dave, you have in no way offended me. To say that have faith,

> without

> > > > > question, is certainly far from reality. I have come to a place in

> my

> > life

> > > > > where I rarely allow myself to question God; that has not always

> been

> > so. I

> > > > > struggled with my faith for many, many years through some terribly

> > difficult

> > > > > circumstances. I hope I won't offend you by saying I will pray for

> > you and

> > > > > ask you not to give up on God. He hasn't given up on you.

> > > > >

> > > > > That being said, I do honestly care about you and about what you

> are

> > going

> > > > > through. Cirrhosis is hard, just plain HARD. Every day is a journey

> > into

> > > > > the unknown and leads us down paths we never dreamed we would have

> to

> > walk.

> > > > > Uncertainly and depression are familiar friends. I do so hope your

> > doctor

> > > > > can help you with the edema. BTW, I just wanted to add that you

> > should give

> > > > > serious consideration to that transplant. Whether you do it or not,

> > give it

> > > > > every chance when deciding. You have a beautiful grandson who would

> > so

> > > > > desperately miss his Grandpa, and I'd be willing to bet your

> daughter

> > would

> > > > > sure miss you too! Sometimes, bad things happen to good people so

> > they can

> > > > > reacess their lives and make fresh starts.

> > > > >

> > > > > I'm praying for you Dave!

> > > > >

> > > > >

> > > > > Warm Hugs........ ...

> > > > >

> > > > > Di

> > > > > http://auntdisexper imentallife. blogspot. com/

> > > > >

> > > > > ____________ _________ _________ __

> > > > > From: dave dodds <daveliltoe@ yahoo. com>

> > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > Sent: Sunday, September 13, 2009 6:13:15 PM

> > > > > Subject: Re: (unknown)

> > > > >

> > > > >

> > > > > Diane, this is one of my biggest problems. I do not have a strong

> > belief

> > > > > in the here after, religion, etc. I do not want to offend those

> that

> > do. I

> > > > > wish I did, but I don't. I see how much it helps people, but I have

> > not

> > > > > been able to grasp the concept. I come from a family that both

> > parents were

> > > > > strong believers and they took me to church regularly. I don't know

> > why I

> > > > > have had such a hard time with faith. I am not of the belief that

> the

> > world

> > > > > happened in a vacuum. There is a degree of spirituality in me. I'm

> > sure

> > > > > you don't want me to go into the usual talk of why bad things

> happen

> > to good

> > > > > people and good things happen to bad people. I just am unable to

> > square the

> > > > > suffering people endure with the idea of God having his hand on the

> > > > > throttle, so to speak. I hope I have not offended you or anyone. I

> > admire

> > > > > your ability to believe without question. I know there is a force

> of

> > good

> > > > > in the universe, and certainly a evil in the

> > > > > universe. I know it would help me if I had your faith, but it

> avoids

> > me or

> > > > > I avoid it. Whichever way it is, the outcome for me is the same,

> lack

> > of

> > > > > faith for which I, in the end, pay the price.

> > > > > Dave

> > > > >

> > > > > ____________ _________ _________ __

> > > > > From: diane chandler <dianechandler@ att.net>

> > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > Sent: Sunday, September 13, 2009 5:28:49 PM

> > > > > Subject: Re: (unknown)

> > > > >

> > > > >

> > > > > Hi Dave,

> > > > >

> > > > > No, Terry opted not to try for a transplant. He had been at death's

> > door a

> > > > > couple of times prior to even knowing about his liver disease. He

> > felt much

> > > > > more peaceful about death than dealing with life after a

> transplant.

> > Also,

> > > > > he had a genetic disorder that predisposed him to liver disease. He

> > thought

> > > > > it would be selfish of him to ask for a donor liver, knowing his

> body

> > would

> > > > > begin attacking it as soon as it was transplanted, when so few are

> > > > > available. It was so hard to sit by and watch him make that

> decision,

> > but I

> > > > > had watched Momma die of renal failure and had seen all she had

> gone

> > through

> > > > > with the dialysis and didn't want to emotionally force anything on

> > Terry

> > > > > that he wasn't ready to deal with. I told him I would support him

> > fully in

> > > > > whatever decision he made; if he chose to go for the transplant, I

> > would be

> > > > > there every step of the way but if not, I would also help him live

> > his life

> > > > > to the fullest until the time came for him to go home

> > > > > with the Lord. As hard as it was to give him up, I did so knowing I

> > had

> > > > > done for him what his heart desired and loved him completely until

> > Jesus

> > > > > came for him.

> > > > >

> > > > > Now that I have cirrhosis as well, I am much in the same boat as

> > > > > you. Terry and I had three children who never made it to this

> world.

> > I

> > > > > have two sisters and a niece and four nephews who love me dearly.

> > However,

> > > > > I am not comfortable asking them to take on the role of my

> caregiver

> > as this

> > > > > disease progresses. I know how hard that is on the loved one and I

> > don't

> > > > > want them to have to go through that. I have already started

> checking

> > in to

> > > > > in-patient hospice care for when that time comes. Whether I will

> > consider a

> > > > > transplant or not is something I haven't really even thought about

> > yet. I

> > > > > pray about it and just ask the Lord to help me make the right

> > decision when

> > > > > the time comes.

> > > > >

> > > > > Whatever decision you make, please know that I am praying for you.

> I

> > do

> > > > > not look forward to dealing with this disease, but I also don't

> allow

> > myself

> > > > > to worry about it. I simply leave it with the Lord and know He

> > already has

> > > > > a plan and all I have to do is submit myself to His will and plan

> for

> > my

> > > > > life. My faith carries me through this, just as it has through so

> > many

> > > > > other areas of my life.

> > > > >

> > > > > Warm Hugs........ ...

> > > > >

> > > > > Di

> > > > > http://auntdisexper imentallife. blogspot. com/

> > > > >

> > > > > ____________ _________ _________ __

> > > > > From: dave dodds <daveliltoe@ yahoo. com>

> > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > Sent: Sunday, September 13, 2009 5:05:45 PM

> > > > > Subject: Re: (unknown)

> > > > >

> > > > >

> > > > > Thanks for writing back Diane..And I am sorry you had to go through

> > this

> > > > > with your husband...I know from dealing with close friends and

> family

> > how

> > > > > difficult a progressive fatal disease is on the caregiver and

> others

> > > > > close..if I may ask, did your husband have a transplant? I am

> > wrestling

> > > > > with that decision when it comes, and whether to put myself and

> > family

> > > > > through that. I don't really have someone I can move in with during

> > the

> > > > > recovery process, and would not put that burden on my daughter and

> > her

> > > > > significant other. For one there is not room in her house, except a

> > > > > finished basement, and I don't see how someone could negotiate the

> > stairs in

> > > > > that condition. For another reason her relationship is fragile I

> > believe,

> > > > > and that would certainly not help, and though we are civil, we

> really

> > don't

> > > > > care a lot for each other. I know some go into medical centers to

> > > > > recuperate and I'm fine with that option, since likely the

> > progression

> > > > > either way will put

> > > > > me into one, but I still have a lot of soul searching to do about a

> > > > > transplant. Dave

> > > > >

> > > > > ____________ _________ _________ __

> > > > > From: diane chandler <dianechandler@ att.net>

> > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > Sent: Sunday, September 13, 2009 4:42:49 PM

> > > > > Subject: Re: (unknown)

> > > > >

> > > > >

> > > > > Dave, I am so sorry. Dealing with this disease wears so quickly on

> > your

> > > > > nerves and makes you so sad, so often. Please know I am praying for

> > you.

> > > > > Do make that call to your doctor tomorrow morning, especially since

> > this is

> > > > > your first experience with the swelling in your extremities. Terry,

> > my late

> > > > > husband, used to swell so badly in his feet that he couldn't walk

> > because

> > > > > his feet would actually be rounded on the bottom and wouldn't

> flaten

> > out,

> > > > > even when he was fully weight-bearing. I cannot say I know what you

> > are

> > > > > going through from my personal experience, but I do know from

> having

> > been

> > > > > with Terry as he went through it. It is agonizing for you and for

> > those who

> > > > > love you. Again, I am so sorry that this has infringed upon your

> > weekend

> > > > > with your daughter and grandson. Please update us after you speak

> > with your

> > > > > doctor. My prayers are with you.

> > > > >

> > > > > Warm Hugs........ ...

> > > > >

> > > > > Di

> > > > > http://auntdisexper imentallife. blogspot. com/

> > > > >

> > > > > ____________ _________ _________ __

> > > > > From: dave dodds <daveliltoe@ yahoo. com>

> > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > Sent: Sunday, September 13, 2009 11:59:08 AM

> > > > > Subject: (unknown)

> > > > >

> > > > >

> > > > > I'm sorry I only seem to come here when things are bad, but seems

> > they are

> > > > > mostly that way now...what has always been a great weekend when my

> > daughter

> > > > > and grandson come up was full of agony for most of my visit...my

> > legs, feet,

> > > > > and ankles swelled up so bad I could hardly walk, and my feet hurt

> > very

> > > > > bad...finally this noon the swelling has mostly gone down..but I

> > wonder for

> > > > > how long? I should call my doc tomorrow, but I get weary of

> > doc's...this is

> > > > > a first in my journey of my feet and ankles swelling like this...I

> > thought

> > > > > the ascites was bad, but that is more horrific..walking is terrible

> > and just

> > > > > laying with my feet up to try and make the pain go away...and

> knowing

> > things

> > > > > will, only progress into being worse...

> > > > > Dave

> > > > >

> > > > >

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yup, I told my pastor's husband that I wanted to literally die laughing. He

said somelike, knowing you, you probably will. Now I have to keep out of

that coma. Or maybe I will shock everybody by coming out of one for a

minute and laugh then. That might be risky for them though. Jan H

On Wed, Sep 16, 2009 at 12:53 AM, diane chandler wrote:

> Well, both of my sisters live in the same county as me, each about 15-20

> minutes away. Do they call? Rarely, unless it's for a specific purpose.

> But, I do know they love me and they do try their best to look out after

> me. Usually, if I speak to them, I'm the one that does the calling. Oh

> well, that's not any different than it always has been! I'm the oldest and

> I'm the one who has always kept things together. BTW, I do so love your

> sense of humor! If we can't laugh about our life, we might as well be dead

> anyway, huh?! LOL!!!!

>

> Warm Hugs...........

>

> Di

> http://auntdisexperimentallife.blogspot.com/

>

>

>

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Wednesday, September 16, 2009 12:49:43 AM

> Subject: Re: (unknown)

>

>

> Diane - I have a friend who is like a sister, actually two separate

> friendships which are like sisters. I wouldn't trade them either. I am

> still willing to give you one of my brothers, and you can have the other

> one's wife too. But, I guess my mother wouldn't like that since he is the

> one who lives closest to her. The other brother does call me when he thinks

> I might die, such as after my bypass. He called at least every week for a

> couple of months, then went to monthly, now it has been once I think since

> the first of the year. Makes me think I will probably live for awhile.

> lol Jan H

>

> On Tue, Sep 15, 2009 at 9:10 PM, diane chandler <dianechandler@ att.net

> >wrote:

>

> > While I love you dearly and have always wanted a brother, I couldn' trade

> > one of my sisters!!! ;) They are both so precious to me and have taken

> > such wonderful care of me since Terry's home going. I don't know what I

> > would do without either one of them!

> >

> > Thank you for the compliments! I have been so neglectful with regards to

> > posting on the blog. I miss it and want to get back to it, but just don't

> > have the energy right now.

> >

> > Warm Hugs........ ...

> >

> > Di

> > http://auntdisexper imentallife. blogspot. com/

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: Jan Holman <janholmangmail (DOT) com>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Tuesday, September 15, 2009 10:52:07 PM

> > Subject: Re: (unknown)

> >

> >

> > Diane, I had never checked out your blog. You really have a lot on there,

> > wasn't able to see everything in one lookysee. I was right, you are

> > elegant, at least when you dress up for pictures. lol You and your

> sisters

> > really look alike. I never had a sister, I am jealous. Can we trade, I

> > will give you one or both of my brothers for one of your sisters. Jan H

> >

> > On Tue, Sep 15, 2009 at 8:27 PM, diane chandler <dianechandler@ att.net

> > >wrote:

> >

> > > It was just a checkup. I have this blockage in the branch of an artery

> > > that cannot be stented, so we have to keep a watch on it just to be

> sure

> > we

> > > don't let it go too far without doing the surgery. I will do the

> surgery

> > if

> > > it becomes absolutely necessary, but not until. I am in no hurry to

> have

> > > heart surgery!

> > >

> > > Glad you found out what was going on with the new GI and that you feel

> > > better about the wait. Praying he and his family are okay and that he

> can

> > > see Bobby Glen very soon. Love ya sweetie!

> > >

> > > Warm Hugs........ ...

> > >

> > > Di

> > > http://auntdisexper imentallife. blogspot. com/

> > >

> > >

> > >

> > >

> > > ____________ _________ _________ __

> > > From: pinkmeetsblue <pinkmeetsblue@ yahoo.com>

> > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > Sent: Tuesday, September 15, 2009 5:21:21 PM

> > > Subject: Re: (unknown)

> > >

> > >

> > > theres that cardio word again,are you just going for a check up,or are

> > you

> > > having issues with your heart??? i would never want to scare you toots!

> > just

> > > trying to be helpful,we are still awaiting to here from dr. about the

> new

> > gi

> > > ,i called today and found out hes been out of the office this week

> > ,family

> > > emergency,so that explains it, dr. douglas is one of the best most

> > > compassinate dr. i know and always does what he says he will, so know i

> > feel

> > > bad that i was upset cause of no call yesterday or today. but he will

> be

> > in

> > > tommorrow phew. praying for him and his family and hoping everything is

> > ok

> > > with him and his.love ya babe!

> > > > >

> > > > > > wow, you don't let cirrhosis occupy your mind much? Tell me how

> to

> > > > > > accomplish that?

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > > ____________ _________ _________ __

> > > > > > From: diane chandler <dianechandler@ att.net>

> > > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > > Sent: Sunday, September 13, 2009 10:10:30 PM

> > > > > > Subject: Re: (unknown)

> > > > > >

> > > > > >

> > > > > > Yes, Dave, Hospice care is for the end-of-life and is something

> you

> > > > > > shouldn't consider until you have made your decision regarding

> > > > > > transplant. Give it much thought and consideration, both for

> > yourself

> > > and

> > > > > > your grandson.

> > > > > >

> > > > > > None of us knows the number of our days. We walk about every day

> > > living

> > > > > > like we think we will live forever; but the truth is that any of

> us

> > > could go

> > > > > > within the next minute. I don't allow the thought that I have

> > > cirrhosis to

> > > > > > occupy too much of my time. I live my life and try my best to

> take

> > > care of

> > > > > > myself. When my time comes, it comes; end of story. I'm not a

> > > fatalist,

> > > > > > just a realist.

> > > > > >

> > > > > > I am always here if you need a friend or an ear to listen. I

> can't

> > > hide my

> > > > > > faith, but I won't shove it down your throat either. Good luck

> with

> > > the

> > > > > > call to your doctor tomorrow!

> > > > > >

> > > > > > Warm Hugs........ ...

> > > > > >

> > > > > > Di

> > > > > > http://auntdisexper imentallife. blogspot. com/

> > > > > >

> > > > > > ____________ _________ _________ __

> > > > > > From: dave dodds <daveliltoe@ yahoo. com>

> > > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > > Sent: Sunday, September 13, 2009 6:57:15 PM

> > > > > > Subject: Re: (unknown)

> > > > > >

> > > > > >

> > > > > > Diane, thanks for the moral support, and for praying for me. I

> > guess

> > > you

> > > > > > could say, Lord knows I need it. What you were saying about my

> > > grandson is

> > > > > > very true. His Grandmother, my X, is very sick also. He could

> > easily

> > > lose

> > > > > > out on knowing either of us well. He just turned two. My

> > > circumstances are

> > > > > > so much better than some that it annoys me I get on so much

> > > self-pity. I

> > > > > > could, when time comes, look into hospice. I think hospice is for

> > the

> > > last

> > > > > > 6 months. I may be wrong, though. I don't know how far away I am

> > from

> > > > > > needing a transplant yet. Several doc's gave me 5 yrs. a little

> > less

> > > than 4

> > > > > > yrs. ago. My liver doc would not give me a length, saying he does

> > nor

> > > > > > forecast the future. I appreciated him for that answer, and the

> > > others for

> > > > > > their honesty. As they say be careful what you ask. I kind of

> wish

> > > now,

> > > > > > when I asked, the other's would not have told me. I am sure they

> > were

> > > going

> > > > > > by percentage's giving my symptoms. If they

> > > > > > were correct I am about 16 months away. As I have often thought,

> > > since

> > > > > > their prediction, very few really know how long they have or how

> > they

> > > will

> > > > > > go. Dave

> > > > > >

> > > > > > ____________ _________ _________ __

> > > > > > From: diane chandler <dianechandler@ att.net>

> > > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > > Sent: Sunday, September 13, 2009 6:23:35 PM

> > > > > > Subject: Re: (unknown)

> > > > > >

> > > > > >

> > > > > > Dave, you have in no way offended me. To say that have faith,

> > without

> > > > > > question, is certainly far from reality. I have come to a place

> in

> > my

> > > life

> > > > > > where I rarely allow myself to question God; that has not always

> > been

> > > so. I

> > > > > > struggled with my faith for many, many years through some

> terribly

> > > difficult

> > > > > > circumstances. I hope I won't offend you by saying I will pray

> for

> > > you and

> > > > > > ask you not to give up on God. He hasn't given up on you.

> > > > > >

> > > > > > That being said, I do honestly care about you and about what you

> > are

> > > going

> > > > > > through. Cirrhosis is hard, just plain HARD. Every day is a

> journey

> > > into

> > > > > > the unknown and leads us down paths we never dreamed we would

> have

> > to

> > > walk.

> > > > > > Uncertainly and depression are familiar friends. I do so hope

> your

> > > doctor

> > > > > > can help you with the edema. BTW, I just wanted to add that you

> > > should give

> > > > > > serious consideration to that transplant. Whether you do it or

> not,

> > > give it

> > > > > > every chance when deciding. You have a beautiful grandson who

> would

> > > so

> > > > > > desperately miss his Grandpa, and I'd be willing to bet your

> > daughter

> > > would

> > > > > > sure miss you too! Sometimes, bad things happen to good people so

> > > they can

> > > > > > reacess their lives and make fresh starts.

> > > > > >

> > > > > > I'm praying for you Dave!

> > > > > >

> > > > > >

> > > > > > Warm Hugs........ ...

> > > > > >

> > > > > > Di

> > > > > > http://auntdisexper imentallife. blogspot. com/

> > > > > >

> > > > > > ____________ _________ _________ __

> > > > > > From: dave dodds <daveliltoe@ yahoo. com>

> > > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > > Sent: Sunday, September 13, 2009 6:13:15 PM

> > > > > > Subject: Re: (unknown)

> > > > > >

> > > > > >

> > > > > > Diane, this is one of my biggest problems. I do not have a strong

> > > belief

> > > > > > in the here after, religion, etc. I do not want to offend those

> > that

> > > do. I

> > > > > > wish I did, but I don't. I see how much it helps people, but I

> have

> > > not

> > > > > > been able to grasp the concept. I come from a family that both

> > > parents were

> > > > > > strong believers and they took me to church regularly. I don't

> know

> > > why I

> > > > > > have had such a hard time with faith. I am not of the belief that

> > the

> > > world

> > > > > > happened in a vacuum. There is a degree of spirituality in me.

> I'm

> > > sure

> > > > > > you don't want me to go into the usual talk of why bad things

> > happen

> > > to good

> > > > > > people and good things happen to bad people. I just am unable to

> > > square the

> > > > > > suffering people endure with the idea of God having his hand on

> the

> > > > > > throttle, so to speak. I hope I have not offended you or anyone.

> I

> > > admire

> > > > > > your ability to believe without question. I know there is a force

> > of

> > > good

> > > > > > in the universe, and certainly a evil in the

> > > > > > universe. I know it would help me if I had your faith, but it

> > avoids

> > > me or

> > > > > > I avoid it. Whichever way it is, the outcome for me is the same,

> > lack

> > > of

> > > > > > faith for which I, in the end, pay the price.

> > > > > > Dave

> > > > > >

> > > > > > ____________ _________ _________ __

> > > > > > From: diane chandler <dianechandler@ att.net>

> > > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > > Sent: Sunday, September 13, 2009 5:28:49 PM

> > > > > > Subject: Re: (unknown)

> > > > > >

> > > > > >

> > > > > > Hi Dave,

> > > > > >

> > > > > > No, Terry opted not to try for a transplant. He had been at

> death's

> > > door a

> > > > > > couple of times prior to even knowing about his liver disease. He

> > > felt much

> > > > > > more peaceful about death than dealing with life after a

> > transplant.

> > > Also,

> > > > > > he had a genetic disorder that predisposed him to liver disease.

> He

> > > thought

> > > > > > it would be selfish of him to ask for a donor liver, knowing his

> > body

> > > would

> > > > > > begin attacking it as soon as it was transplanted, when so few

> are

> > > > > > available. It was so hard to sit by and watch him make that

> > decision,

> > > but I

> > > > > > had watched Momma die of renal failure and had seen all she had

> > gone

> > > through

> > > > > > with the dialysis and didn't want to emotionally force anything

> on

> > > Terry

> > > > > > that he wasn't ready to deal with. I told him I would support him

> > > fully in

> > > > > > whatever decision he made; if he chose to go for the transplant,

> I

> > > would be

> > > > > > there every step of the way but if not, I would also help him

> live

> > > his life

> > > > > > to the fullest until the time came for him to go home

> > > > > > with the Lord. As hard as it was to give him up, I did so knowing

> I

> > > had

> > > > > > done for him what his heart desired and loved him completely

> until

> > > Jesus

> > > > > > came for him.

> > > > > >

> > > > > > Now that I have cirrhosis as well, I am much in the same boat as

> > > > > > you. Terry and I had three children who never made it to this

> > world.

> > > I

> > > > > > have two sisters and a niece and four nephews who love me dearly.

> > > However,

> > > > > > I am not comfortable asking them to take on the role of my

> > caregiver

> > > as this

> > > > > > disease progresses. I know how hard that is on the loved one and

> I

> > > don't

> > > > > > want them to have to go through that. I have already started

> > checking

> > > in to

> > > > > > in-patient hospice care for when that time comes. Whether I will

> > > consider a

> > > > > > transplant or not is something I haven't really even thought

> about

> > > yet. I

> > > > > > pray about it and just ask the Lord to help me make the right

> > > decision when

> > > > > > the time comes.

> > > > > >

> > > > > > Whatever decision you make, please know that I am praying for

> you.

> > I

> > > do

> > > > > > not look forward to dealing with this disease, but I also don't

> > allow

> > > myself

> > > > > > to worry about it. I simply leave it with the Lord and know He

> > > already has

> > > > > > a plan and all I have to do is submit myself to His will and plan

> > for

> > > my

> > > > > > life. My faith carries me through this, just as it has through so

> > > many

> > > > > > other areas of my life.

> > > > > >

> > > > > > Warm Hugs........ ...

> > > > > >

> > > > > > Di

> > > > > > http://auntdisexper imentallife. blogspot. com/

> > > > > >

> > > > > > ____________ _________ _________ __

> > > > > > From: dave dodds <daveliltoe@ yahoo. com>

> > > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > > Sent: Sunday, September 13, 2009 5:05:45 PM

> > > > > > Subject: Re: (unknown)

> > > > > >

> > > > > >

> > > > > > Thanks for writing back Diane..And I am sorry you had to go

> through

> > > this

> > > > > > with your husband...I know from dealing with close friends and

> > family

> > > how

> > > > > > difficult a progressive fatal disease is on the caregiver and

> > others

> > > > > > close..if I may ask, did your husband have a transplant? I am

> > > wrestling

> > > > > > with that decision when it comes, and whether to put myself and

> > > family

> > > > > > through that. I don't really have someone I can move in with

> during

> > > the

> > > > > > recovery process, and would not put that burden on my daughter

> and

> > > her

> > > > > > significant other. For one there is not room in her house, except

> a

> > > > > > finished basement, and I don't see how someone could negotiate

> the

> > > stairs in

> > > > > > that condition. For another reason her relationship is fragile I

> > > believe,

> > > > > > and that would certainly not help, and though we are civil, we

> > really

> > > don't

> > > > > > care a lot for each other. I know some go into medical centers to

> > > > > > recuperate and I'm fine with that option, since likely the

> > > progression

> > > > > > either way will put

> > > > > > me into one, but I still have a lot of soul searching to do about

> a

> > > > > > transplant. Dave

> > > > > >

> > > > > > ____________ _________ _________ __

> > > > > > From: diane chandler <dianechandler@ att.net>

> > > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > > Sent: Sunday, September 13, 2009 4:42:49 PM

> > > > > > Subject: Re: (unknown)

> > > > > >

> > > > > >

> > > > > > Dave, I am so sorry. Dealing with this disease wears so quickly

> on

> > > your

> > > > > > nerves and makes you so sad, so often. Please know I am praying

> for

> > > you.

> > > > > > Do make that call to your doctor tomorrow morning, especially

> since

> > > this is

> > > > > > your first experience with the swelling in your extremities.

> Terry,

> > > my late

> > > > > > husband, used to swell so badly in his feet that he couldn't walk

> > > because

> > > > > > his feet would actually be rounded on the bottom and wouldn't

> > flaten

> > > out,

> > > > > > even when he was fully weight-bearing. I cannot say I know what

> you

> > > are

> > > > > > going through from my personal experience, but I do know from

> > having

> > > been

> > > > > > with Terry as he went through it. It is agonizing for you and for

> > > those who

> > > > > > love you. Again, I am so sorry that this has infringed upon your

> > > weekend

> > > > > > with your daughter and grandson. Please update us after you speak

> > > with your

> > > > > > doctor. My prayers are with you.

> > > > > >

> > > > > > Warm Hugs........ ...

> > > > > >

> > > > > > Di

> > > > > > http://auntdisexper imentallife. blogspot. com/

> > > > > >

> > > > > > ____________ _________ _________ __

> > > > > > From: dave dodds <daveliltoe@ yahoo. com>

> > > > > > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > > > > > Sent: Sunday, September 13, 2009 11:59:08 AM

> > > > > > Subject: (unknown)

> > > > > >

> > > > > >

> > > > > > I'm sorry I only seem to come here when things are bad, but seems

> > > they are

> > > > > > mostly that way now...what has always been a great weekend when

> my

> > > daughter

> > > > > > and grandson come up was full of agony for most of my visit...my

> > > legs, feet,

> > > > > > and ankles swelled up so bad I could hardly walk, and my feet

> hurt

> > > very

> > > > > > bad...finally this noon the swelling has mostly gone down..but I

> > > wonder for

> > > > > > how long? I should call my doc tomorrow, but I get weary of

> > > doc's...this is

> > > > > > a first in my journey of my feet and ankles swelling like

> this...I

> > > thought

> > > > > > the ascites was bad, but that is more horrific..walking is

> terrible

> > > and just

> > > > > > laying with my feet up to try and make the pain go away...and

> > knowing

> > > things

> > > > > > will, only progress into being worse...

> > > > > > Dave

> > > > > >

> > > > > >

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Phyllis, I am so sorry. I can't imagine what you are feeling right now.

But remember, we all love you, we will be praying for you and there are

others here who know exactly what you are going through. I hope you will be

staying around. There is still a lot of support for you here. Jan H

On Wed, Sep 23, 2009 at 12:02 AM, Phyllis Delgado wrote:

> My Husband Phil passed away today @ the age of 66. His liver finally gave

> out and then everything else followed. I took him to er yesterday around

> noon, they had him in er 12 hrs before the could stablize his BP.

> Her then went into a medical floor while they ran tests to determine what

> was causing his pain in stomach. His BP started to fall again, so he was

> then transferred to ICU and he never made it home from there. Thank you all

> for your support , your prayers and your friendship. I never would have

> survived this ordeal without this amazing group of people..I want to thank

> you ALL, from the bottom of my heart. Tough days ahead..

> Keep the faith and I will try to do the same.

> Much love, Phyllis

>

>

>

>

>

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