Re: (unknown)

[Guest guest]

yep!

________________________________

To: livercirrhosissupport

Sent: Sunday, September 6, 2009 7:37:23 AM

Subject: Re: (unknown)

 

You rock,Bobby!!

                                       

                                    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: Bob Aragon <robwalkingeagle@ yahoo.com>

Subject: Re: (unknown)

To: livercirrhosissuppo rtyahoogroups (DOT) com

Date: Saturday, September 5, 2009, 11:45 PM

 

Dave, there is no user agreement to govern this group. The owner has left it up

to the three of us to moderate as best we can, and we have very very simple

rules which are mostly common sense. Posting links to any products, asking for

donations or other requests for money , which has actually happened, flaming

each other, which happens about twice a year, and discussing politics and other

divisive subjects usually gets a response from a moderator.

If one member offends another, it is usually brought to the attention of the

offender by the offendee, and apologies are exchanged, and that's usually the

end of it, no moderator needed. I hope Gloria does not quit. I hope that trying

to keep some kind of order here does not discourage people to post, but the

reality is that every month there are more and more people who find us on line

looking for support and answers. If this someone decides that things have gotten

too strict, they might want to check out other support groups, and they might

find one more laid back, but I have checked out many, and find almost all of

them to be much much more strict.

My wife joined a support group in 2002 after being diagnosed with Chiari

malformation. She actually joined several, and they all helped shape her course

of treatment. I toyed with the idea of starting my own group because our owner

here , being a sufferer of end stage liver disease herself was unable to tend to

this group when she was very ill, and there was grumbling among the members. One

member actually got fed up with things and started another liver cirrhosis

support group here at Yahoo.

I belonged to both for a while until she disappeared from the web like a puff of

smoke. My blackberry actually notifies me now in my own voice " some one just

posted on the OLD support group " , 24 hours a day. I never changed it. I think

about her when ever I get that notification. I am grateful to have been

nominated to me a moderator here.

This really is the best support group on the web in my opinion. I've tried a

bunch. But it isnt the moderators who make it so special, it's the people who

are the members! It's YOU, Barby, Jan, Abijann, ,Pamela, Lyncia, Penny,

Qoya,Sharon, ( she quit by the way), Tilly,

Phyliss, Jill , Maureen, ,MaC, , Gloria,, ,Debra,

Debbie,, Crazy Girl, Kim, its all of YOU who make this the best support

group. They may have better graphics and features, but we have the PEOPLE.

I dont make too many AA meetings these days because of the cigarette smoke and

the transportation issues, but I feel like this group is the service that we in

AA are encourage to do as a part of a program of sobriety. I know this does keep

me very busy.

Even if I dont post, I read evey singe one, even when I was in the hospital two

summers ago. My black berry is on 24 hours, and often gongs in the middle of the

night with Yahoo chat, and I end up having a conversation with someone I dont

even know until the sun comes up. It is very very interesting, and also very

rewarding. .

I am really glad that most of the people here really do get the idea of what is

appropriate, and what is not and it makes me sad any time someone quits. I was

sad that my friend quit two years ago and started her own group, and then just

disappeared. I am just really glad that we have a good mix here, my other

support groups were dismal. Everyone decompensated, no humor, mean people, you

name it.

As MaC always says, it's all about the love.

love, Bobby

____________ _________ _________ __

From: dave dodds <daveliltoe@ yahoo. com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Saturday, September 5, 2009 11:51:08 AM

Subject: Re: (unknown)

Phyllis...thank you very much for the reply..I'm not trained in any type of

public speaking, other than the norm, and my primary caregiver, my Great

Grandmother. ..she was almost full Osage Indian, and her last name was

Speaker..I love(d) here as much as she does (did) me..she was supreme at

unconditional love..something I did not find again until I was 28 and had my own

baby..I have always taken great pride and love from my relationship with

her..listening to her stories, indeed just watching her..a small woman with

floor length raven hair...enough of my ramblings; mainly wanted to tell Mac how

difficult being monitor of a group must be..I do not envy your task..I would not

be able to control my ramblings... I'm not trying to suck up to you, because you

are a monitor...for one I'm not sure you are one...my days of sucking up are

over...I am at the 'take me as I am, or stay the **** away stage'...Just hated

to see Gloria leave, as she was a

constant and dependable member. Her responses were almost on as a daily voice..I

do not even know what your terms and conditions are anyhow..I figure when I step

over the line I will hear about it..good luck to you, Gloria, Phyllis, etc.

peace out, Dave

____________ _________ _________ __

From: Phyllis Delgado <pdelgado354@ yahoo.com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Friday, September 4, 2009 3:09:30 PM

Subject: Re: (unknown)

DAVE, ARE YOU IN PUBLIC RELATIONS? YOU'RE DAMN GOOD!

KUDOS!

____________ _________ _________ __

From: dave dodds <daveliltoe@ yahoo. com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Friday, September 4, 2009 8:01:41 AM

Subject: (unknown)

Gloria, I was not personally offended about your remark, and realize that is a

common term used in many countries attributed to immigrants that arrive in our

countries, and many others, by any means possible.... In their case often

unsafe, overloaded boats...I do understand how some may be offended...just so

happens most early immigrants arrived in just such a way...apparently some are

offended by the term, as is their right...I have found your entries here to be

very compassionate and caring...is the topic of immigrants related to health

care? Very much so...so it must be the term found non-appropriate, and hopefully

not the effect that immigration has on the health system..my reason for joining

this group is to find a release, a better understanding, etc. from those

suffering with liver disease...much of the release for me involves writing what

is happening with myself, listening to others telling their own circumstance,

and very importantly and

paramount, comradery ...as one who is often offended easily, and often wrong in

perceived hurts, I must be vigilant in watching for justified and unjustified

wrongs...if I do that, 90 plus % are unjustified. ..peace

Dave

[Guest guest]

You are awesome! We have never even met in person, and you are putting everyone

in my family (except Sharon) to shame. She took me yesterday to get my coin, a

solid sterling silver 3 year coin. I didn't get to hold it, or look at it yet,

because it's not the 15th yet.. My AA birthday is really special to me, mostly

because not drinking and living sober is something I work at every day. Thank

you for remembering, you sweet thoughtful lady!

love, Bobby

ps, how is your weekend going?

________________________________

To: livercirrhosissupport

Sent: Sunday, September 6, 2009 7:36:38 AM

Subject: Re: (unknown)

very well said bobby,you are the sweetest!!!! and speaking of AA you have a

birthday right around the corner dont you !!! i believe the 15th?! love you

bob-o!!!!

>

> Dave, there is no user agreement to govern this group. The owner has left it

up to the three of us to moderate as best we can, and we have very very simple

rules which are mostly common sense. Posting links to any products, asking for

donations or other requests for money , which has actually happened, flaming

each other, which happens about twice a year, and discussing politics and other

divisive subjects usually gets a response from a moderator.

>

> If one member offends another, it is usually brought to the attention of the

offender by the offendee, and apologies are exchanged, and that's usually the

end of it, no moderator needed. I hope Gloria does not quit. I hope that trying

to keep some kind of order here does not discourage people to post, but the

reality is that every month there are more and more people who find us on line

looking for support and answers. If this someone decides that things have gotten

too strict, they might want to check out other support groups, and they might

find one more laid back, but I have checked out many, and find almost all of

them to be much much more strict.

>

> My wife joined a support group in 2002 after being diagnosed with Chiari

malformation. She actually joined several, and they all helped shape her course

of treatment. I toyed with the idea of starting my own group because our owner

here , being a sufferer of end stage liver disease herself was unable to tend to

this group when she was very ill, and there was grumbling among the members. One

member actually got fed up with things and started another liver cirrhosis

support group here at Yahoo.

> I belonged to both for a while until she disappeared from the web like a puff

of smoke. My blackberry actually notifies me now in my own voice " some one just

posted on the OLD support group " , 24 hours a day. I never changed it. I think

about her when ever I get that notification. I am grateful to have been

nominated to me a moderator here.

> This really is the best support group on the web in my opinion. I've tried a

bunch. But it isnt the moderators who make it so special, it's the people who

are the members! It's YOU, Barby, Jan, Abijann, ,Pamela, Lyncia, Penny,

Qoya,Sharon, ( she quit by the way), Tilly,

> Phyliss, Jill , Maureen, ,MaC, , Gloria,, ,Debra,

Debbie,, Crazy Girl, Kim, its all of YOU who make this the best support

group. They may have better graphics and features, but we have the PEOPLE.

> I dont make too many AA meetings these days because of the cigarette smoke and

the transportation issues, but I feel like this group is the service that we in

AA are encourage to do as a part of a program of sobriety. I know this does keep

me very busy.

>

> Even if I dont post, I read evey singe one, even when I was in the hospital

two summers ago. My black berry is on 24 hours, and often gongs in the middle of

the night with Yahoo chat, and I end up having a conversation with someone I

dont even know until the sun comes up. It is very very interesting, and also

very rewarding. .

>

> I am really glad that most of the people here really do get the idea of what

is appropriate, and what is not and it makes me sad any time someone quits. I

was sad that my friend quit two years ago and started her own group, and then

just disappeared. I am just really glad that we have a good mix here, my other

support groups were dismal. Everyone decompensated, no humor, mean people, you

name it.

> As MaC always says, it's all about the love.

>

> love, Bobby

>

>

>

>

>

> ____________ _________ _________ __

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

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Saturday, September 5, 2009 11:51:08 AM

> Subject: Re: (unknown)

>

>

> Phyllis...thank you very much for the reply..I'm not trained in any type of

public speaking, other than the norm, and my primary caregiver, my Great

Grandmother. ..she was almost full Osage Indian, and her last name was

Speaker..I love(d) here as much as she does (did) me..she was supreme at

unconditional love..something I did not find again until I was 28 and had my own

baby..I have always taken great pride and love from my relationship with

her..listening to her stories, indeed just watching her..a small woman with

floor length raven hair...enough of my ramblings; mainly wanted to tell Mac how

difficult being monitor of a group must be..I do not envy your task..I would not

be able to control my ramblings... I'm not trying to suck up to you, because you

are a monitor...for one I'm not sure you are one...my days of sucking up are

over...I am at the 'take me as I am, or stay the **** away stage'...Just hated

to see Gloria leave, as she was a

> constant and dependable member. Her responses were almost on as a daily

voice..I do not even know what your terms and conditions are anyhow..I figure

when I step over the line I will hear about it..good luck to you, Gloria,

Phyllis, etc. peace out, Dave

>

> ____________ _________ _________ __

> From: Phyllis Delgado <pdelgado354@ yahoo.com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Friday, September 4, 2009 3:09:30 PM

> Subject: Re: (unknown)

>

>

> DAVE, ARE YOU IN PUBLIC RELATIONS? YOU'RE DAMN GOOD!

> KUDOS!

>

> ____________ _________ _________ __

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

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Friday, September 4, 2009 8:01:41 AM

> Subject: (unknown)

>

>

> Gloria, I was not personally offended about your remark, and realize that is

a common term used in many countries attributed to immigrants that arrive in our

countries, and many others, by any means possible.... In their case often

unsafe, overloaded boats...I do understand how some may be offended...just so

happens most early immigrants arrived in just such a way...apparently some are

offended by the term, as is their right...I have found your entries here to be

very compassionate and caring...is the topic of immigrants related to health

care? Very much so...so it must be the term found non-appropriate, and

hopefully not the effect that immigration has on the health system..my reason

for joining this group is to find a release, a better understanding, etc. from

those suffering with liver disease...much of the release for me involves writing

what is happening with myself, listening to others telling their own

circumstance, and very importantly and

> paramount, comradery ...as one who is often offended easily, and often wrong

in perceived hurts, I must be vigilant in watching for justified and unjustified

wrongs...if I do that, 90 plus % are unjustified. ..peace

> Dave

>

>

[Guest guest]

oh bob-o i couldnt forget such a special day now could i??!!!i am so very proud

of you my friend,my brother,wanna be my brother huh huh lol.i dont know your old

birthday,but i do remember your new birthday ,what a great accomplishment!you

have done well bobby and i would never forget something so special about someone

who is so special to me!!!! our weekend was blahhhhhhhhh hanging around the

house, i am gonna grill tommorrow,this should be interesting,last time i lite

the grill i burnt my darn eyelashes off,no joke it just went poof and there went

my lashes,i dont get so close to it now lol.a coulpe of the kids will be coming

over and the babies,so that should be fun...well depending on which kids show up

hahahahaha,erica and i seem to stay on oppisite sides of the universe these

days.she doesnt like me much lately...kids what can ya do except wait for them

to grow up and aquire wisdom. its raining here right now,i hope it doesnt

tommorrow,so whats your weekend been like. tell sharon when you get your coin to

give you a great big hug for me, and i will be there in my heart routing you on

my friend,love you barby

> >

> > Dave, there is no user agreement to govern this group. The owner has left it

up to the three of us to moderate as best we can, and we have very very simple

rules which are mostly common sense. Posting links to any products, asking for

donations or other requests for money , which has actually happened, flaming

each other, which happens about twice a year, and discussing politics and other

divisive subjects usually gets a response from a moderator.

> >

> > If one member offends another, it is usually brought to the attention of the

offender by the offendee, and apologies are exchanged, and that's usually the

end of it, no moderator needed. I hope Gloria does not quit. I hope that trying

to keep some kind of order here does not discourage people to post, but the

reality is that every month there are more and more people who find us on line

looking for support and answers. If this someone decides that things have gotten

too strict, they might want to check out other support groups, and they might

find one more laid back, but I have checked out many, and find almost all of

them to be much much more strict.

> >

> > My wife joined a support group in 2002 after being diagnosed with Chiari

malformation. She actually joined several, and they all helped shape her course

of treatment. I toyed with the idea of starting my own group because our owner

here , being a sufferer of end stage liver disease herself was unable to tend to

this group when she was very ill, and there was grumbling among the members. One

member actually got fed up with things and started another liver cirrhosis

support group here at Yahoo.

> > I belonged to both for a while until she disappeared from the web like a

puff of smoke. My blackberry actually notifies me now in my own voice " some one

just posted on the OLD support group " , 24 hours a day. I never changed it. I

think about her when ever I get that notification. I am grateful to have been

nominated to me a moderator here.

> > This really is the best support group on the web in my opinion. I've tried a

bunch. But it isnt the moderators who make it so special, it's the people who

are the members! It's YOU, Barby, Jan, Abijann, ,Pamela, Lyncia, Penny,

Qoya,Sharon, ( she quit by the way), Tilly,

> > Phyliss, Jill , Maureen, ,MaC, , Gloria,, ,Debra,

Debbie,, Crazy Girl, Kim, its all of YOU who make this the best support

group. They may have better graphics and features, but we have the PEOPLE.

> > I dont make too many AA meetings these days because of the cigarette smoke

and the transportation issues, but I feel like this group is the service that we

in AA are encourage to do as a part of a program of sobriety. I know this does

keep me very busy.

> >

> > Even if I dont post, I read evey singe one, even when I was in the hospital

two summers ago. My black berry is on 24 hours, and often gongs in the middle of

the night with Yahoo chat, and I end up having a conversation with someone I

dont even know until the sun comes up. It is very very interesting, and also

very rewarding. .

> >

> > I am really glad that most of the people here really do get the idea of what

is appropriate, and what is not and it makes me sad any time someone quits. I

was sad that my friend quit two years ago and started her own group, and then

just disappeared. I am just really glad that we have a good mix here, my other

support groups were dismal. Everyone decompensated, no humor, mean people, you

name it.

> > As MaC always says, it's all about the love.

> >

> > love, Bobby

> >

> >

> >

> >

> >

> > ____________ _________ _________ __

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

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Saturday, September 5, 2009 11:51:08 AM

> > Subject: Re: (unknown)

> >

> >

> > Phyllis...thank you very much for the reply..I'm not trained in any type of

public speaking, other than the norm, and my primary caregiver, my Great

Grandmother. ..she was almost full Osage Indian, and her last name was

Speaker..I love(d) here as much as she does (did) me..she was supreme at

unconditional love..something I did not find again until I was 28 and had my own

baby..I have always taken great pride and love from my relationship with

her..listening to her stories, indeed just watching her..a small woman with

floor length raven hair...enough of my ramblings; mainly wanted to tell Mac how

difficult being monitor of a group must be..I do not envy your task..I would not

be able to control my ramblings... I'm not trying to suck up to you, because you

are a monitor...for one I'm not sure you are one...my days of sucking up are

over...I am at the 'take me as I am, or stay the **** away stage'...Just hated

to see Gloria leave, as she was a

> > constant and dependable member. Her responses were almost on as a daily

voice..I do not even know what your terms and conditions are anyhow..I figure

when I step over the line I will hear about it..good luck to you, Gloria,

Phyllis, etc. peace out, Dave

> >

> > ____________ _________ _________ __

> > From: Phyllis Delgado <pdelgado354@ yahoo.com>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Friday, September 4, 2009 3:09:30 PM

> > Subject: Re: (unknown)

> >

> >

> > DAVE, ARE YOU IN PUBLIC RELATIONS? YOU'RE DAMN GOOD!

> > KUDOS!

> >

> > ____________ _________ _________ __

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

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Friday, September 4, 2009 8:01:41 AM

> > Subject: (unknown)

> >

> >

> > Gloria, I was not personally offended about your remark, and realize that

is a common term used in many countries attributed to immigrants that arrive in

our countries, and many others, by any means possible.... In their case often

unsafe, overloaded boats...I do understand how some may be offended...just so

happens most early immigrants arrived in just such a way...apparently some are

offended by the term, as is their right...I have found your entries here to be

very compassionate and caring...is the topic of immigrants related to health

care? Very much so...so it must be the term found non-appropriate, and

hopefully not the effect that immigration has on the health system..my reason

for joining this group is to find a release, a better understanding, etc. from

those suffering with liver disease...much of the release for me involves writing

what is happening with myself, listening to others telling their own

circumstance, and very importantly and

> > paramount, comradery ...as one who is often offended easily, and often wrong

in perceived hurts, I must be vigilant in watching for justified and unjustified

wrongs...if I do that, 90 plus % are unjustified. ..peace

> > Dave

> >

> >

[Guest guest]

Yes, my husband's edema became much more pronounced as the disease progressed.

 

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

 

Di

http://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

Sent: Wednesday, September 9, 2009 4:46:02 PM

Subject: (unknown)

 

I have a question ..I have had ascites for 3 yrs. now and take furosemide and

amiloride for it...my fluid retention has always been ascites,  but the last 5

days or so I have had the normal swelling in my stomach, but am now having a

great deal of swelling in my feet and ankles..have any of you all had this

progression?  Previously I have had very little edema, or none at all...guess

I should see my doc.  Was just wondering if any of you all had this apparent

progression?  Thanks, Dave

[Guest guest]

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

________________________________

To: livercirrhosissupport

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 <daveliltoeyahoo (DOT) 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

[Guest guest]

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://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

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

[Guest guest]

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

________________________________

To: livercirrhosissupport

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 <daveliltoeyahoo (DOT) 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

[Guest guest]

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://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

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

[Guest guest]

Hi Penny, I am glad your new liver is doing good.  I hope you continue forward. 

So you again developed Hep C after the transplant?  My doctor said the Hep C I

had, has been shed by my body, or is no longer detectable.  This is of course

good news, and he was very happy about it.  This was a year or so ago, and I

have had much blood work there since without the Hep C showing again.  I guess I

have had the ascites now for two years and have grown somewhat use to it, if

that is possible, and this edema is new to me and I just saw it as such a

progression.   

 Dave

________________________________

To: livercirrhosissupport

Sent: Sunday, September 13, 2009 6:06:19 PM

Subject: (unknown)

 

I'm sorry this is happening to you. I understand how you feel. I had edema in my

feet, ankles, and legs off and on for years before I got cirrhosis. It was from

the Hepatitis C. Once I got cirrhosis, it was worse. For me, the ascites was

worse than the edema, although the feet and legs were so swollen and

uncomfortable. I got a transplant in January 2008, and my liver is doing well,

and I'm undetectable of the Hep C, and I have a couple more months of the

treatment left.

I hope you feel better.

Penny

>

> 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

>

>

>

>

>

[Guest guest]

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

________________________________

To: livercirrhosissupport

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 <daveliltoeyahoo (DOT) 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

[Guest guest]

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.

Subject: Re: (unknown)

To: livercirrhosissupport

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

[Guest guest]

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

> 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

>

>

>

>

> ________________________________

>

> To: livercirrhosissupport

> 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 <daveliltoeyahoo (DOT) 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

>

>

[Guest guest]

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

________________________________

To: livercirrhosissupport

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 <daveliltoeyahoo (DOT) 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

>

>

[Guest guest]

Hi Dave,

I'm so glad your body was able to get rid of the virus on its own. All of us

with Hep C wish that would happen. Since the Hep C was in my blood before the

transplant, it was still there after, and needed to be treated so it won't

destroy the new liver too. Hopefully, the Hep C will still be gone without a

relapse after the treatment ends.

Take care.

Penny

> >

> > 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

> >

> >

> >

> >

> >

[Guest guest]

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://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

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

[Guest guest]

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://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

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 <daveliltoeyahoo (DOT) 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

[Guest guest]

Oh, Di...thanks for that post. I know it's still so hard for you...Love you!!

                                       

                                    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

[Guest guest]

This is so well said,Diane. This, too, is how Ed and I live. It's like some days

we can actually forget about the cirrhosis and live life with abandon!

                                      

                                    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.

Subject: Re: (unknown)

To: livercirrhosissupport

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 <daveliltoeyahoo (DOT) 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

[Guest guest]

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

>

> > 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

> >

> >

[Guest guest]

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

that?

________________________________

To: livercirrhosissupport

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 <daveliltoeyahoo (DOT) 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

[Guest guest]

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

shows in your writings, your memories. 

________________________________

To: livercirrhosissupport

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

[Guest guest]

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 wrote:

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

> accomplish that?

>

>

>

>

> ________________________________

>

> To: livercirrhosissupport

> 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 <daveliltoeyahoo (DOT) 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

>

>

[Guest guest]

Thank you Jill.  I have decided it is never going to become easy.  It is

sometimes easier, but never easy.  I love you too, sweetie and I'm praying for

you and Ed.

 

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

 

Di

http://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

Sent: Monday, September 14, 2009 7:46:56 AM

Subject: Re: (unknown)

 

Oh, Di...thanks for that post. I know it's still so hard for you...Love you!!

                                       

                                    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

[Guest guest]

It is also the way Terry and I faced his cirrhosis.  There were periods of weeks

at a time when it just seemed like an ugly rumor and he wasn't really sick at

all.  It helped us maintain a life of joy while walking to his home going.  We

often sat on the front porch at night while he smoked a cigar and talked about

how well he was doing and made plans for things we wanted to do in the future. 

Perhaps in the back of our minds we knew we would never get to do most of those

things, but it was still joyful just sitting there making the plans and dreaming

together.  I will never regret it.

 

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

 

Di

http://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

Sent: Monday, September 14, 2009 7:49:48 AM

Subject: Re: (unknown)

 

This is so well said,Diane. This, too, is how Ed and I live. It's like some days

we can actually forget about the cirrhosis and live life with abandon!

                                      

                                    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

[Guest guest]

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://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

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