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Posted
Posted

Bonnie,

Sorry that I can't offer any words of wisdom, but do remember to take

care of yourself. It's tough enough having to deal with this disease,

without being subjected to the drug/alcohol issues your hubby is having and

the fallout from his behavior.

Hugs,

Sandy

On Mon, Sep 26, 2011 at 3:00 PM, Bonnie Lee wrote:

> My husband has a MELD score of 15, this was last evaluated last year. He

> has been drinking and smoking crack cocaine. He just got out of a

> residential rehab and is back out there. I go to school full time and of

> course he gets disability. Lately he has gone from being so loving to a

> very mean man. (while sober) he goes from being nice to extremely verbally

> abusive. None of what he is saying is making sense to me, not that his words

> dont make sense, but WHAT he was saying was not nice. I have decided to

> leave him, again he promises to quit drinking telling me that he made a deal

> with God. I dont know if it is Hepatic encephalopathy or if it is the

> alcoholism. Does anyone have any experience with this part of the

> disease??? Thanks, Bonnie

>

>

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Thursday, September 22, 2011 7:35 AM

> Subject: Re: Help

>

>

>

> awesome post to read first thing in the morning..good job!!!god bless

> you!!!

>

>

> >

> > I wonder how many there are here, that feel that they don't have much

> help or support in the real world?? Oh, I've been there! Having

> expectations on some family members and certainly getting nothing back.Â

> Yup, the list of the people that I thought were friends and who didn't even

> call during the treatment time or the cancer.

> >

> >

> > Well, I think it very well could have been my Higher Power preparing me

> for what was to come!! Many folks in these groups that know my walk,

> constantly tell me how I'm an inspiration. I certainly do not feel that

> way; but, sadly, I can tell you, that a few in my husband's family and some

> friends,either do not see it in that way or just couldn't be bothered to

> think about it anyway. Yup, it hurt big time!! Still to this day, I can

> not wrap my mind around that type of behavior!! Thank heavens too, because

> I wouldn't want to be me if I was that self-centered.Â

> >

> >

> > But, it sure did clean out some of the Pollyanna in me! I've been so

> blessed to be living in this RV park with the west coasts big trees around

> me. It gave me a lot of time to search my soul and ask myself where I was

> going and with whom. I sure didn't want those two-faced people in my life,

> friends or family. However, it gave me an opportunity to peek out of my

> circle and see some gals that looked a little lonely and afraid sometimes.Â

> So, I have some new friendships, I have the old friendships that did last

> and I have my family.

> > Now that I have been somewhat prepared, mostly I have my grip on my

> Higher Power again and that makes me tough. I don't have to go weeding

> people out of my life now and I'm coming up to my biggest battle for my

> liver yet. Chances are extremely high that I'm not going to come out of

> this alive. But, you know, I'm not scared!!! I feel very safe with my

> Higher Power in the drivers seat and the friends that I could keep. I've

> cleaned my side of the street. I constantly tell those that I love the

> most - that I love them.  Even my Dad!! LOL That little old guy now

> expects to get a " I love you Dad " and a kiss on his head. I think that the

> only thing that worries me a bit, is the pain!! However, there are a whole

> lot of folks in this group that live in that pain, so I'm blessed to be

> directed here.

> >

> > Whoops, I actually started this to say to Annie - ask for that help!!Â

> There are really people out there that will help while the ones we thought

> would, won't. You have no reason to be a martyr about this. You've had a

> rough road and it's OK to ask for help. I would say definitely, if you

> belong to a church, talk with the minister about it. He/she will

> definitely know some folks. But the bottom line is - be all right with the

> big Spirit and I'm sure that your needs will be filled and likely not from

> where you might think.

> >

> > Luv Gloria

> >

> >

> >

> >

> >

> >

> > ________________________________

> >

> >

> > thank you so much

> >

> > Annie

> > > To: livercirrhosissupport

> >

> >

> >

> >

> >

> >

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Posted
Posted

Bonnie

I do not know if I have any words of wisdom; but, I sure do understand what you

are saying.

First of all, my husband and I were both recovering alcoholics, so alcohol was

not a problem.  However, my recovery program has very little to do with booze

and instead, teaches me a good way of life where I won't fall into the same

behaviour that brought on my drinking.

All through 2009, I was on a clinical trial for the new medication to battle Hep

C.  This was my 2nd treatment; but, it was so entirely different than my 1st,

in every way.  Especially emotionally.  I was usually a basket case and really

thinking that nobody really cared about me.  Oh, it embarrasses me to even

remember back, because as a rule I am not that kind of person at all.  So, I

know that it was very difficult for my husband and several times I tried to get

his kids to pay attention to what he needed.  Of course, they did nothing.

In Oct 2009, with just 12 weeks left to go on the clinical, I was called to the

clinic to be told that it was highly likely that I had 2 tumors on my liver. 

So, on Jan 14th, I completed tx and about 2 weeks later, it was confirmed that I

had the cancer.  To my astonishment, my husband became an evil twin, constantly

raving at me and saying the absolute most awful things.  It didn't let up very

much and as a matter of fact, I was never sure that he would be coming over to

the city for my operation.  I only knew that when we were on the ferry.  After

that very bad surgery, he just took up where he'd left off.  So, finally, I

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Monday, September 26, 2011 1:00:51 PM

Subject: hepatic encephalopathy

 

My husband has a MELD score of 15, this was last evaluated last year.  He has

been drinking and smoking crack cocaine.  He just got out of a residential

rehab and is back out there.  I go to school full time and of course he gets

disability.  Lately he has gone from being so loving to a very mean man. 

(while sober) he goes from being nice to extremely verbally abusive. None of

what he is saying is making sense to me, not that his words dont make sense, but

WHAT he was saying was not nice.  I have decided to leave him, again he

promises to quit drinking telling me that he made a deal with God. I dont know

if it is Hepatic encephalopathy or if it is the alcoholism.  Does anyone have

any experience with this part of the disease???  Thanks, Bonnie

________________________________

To: livercirrhosissupport

Sent: Thursday, September 22, 2011 7:35 AM

Subject: Re: Help

 

awesome post to read first thing in the morning..good job!!!god bless you!!!

>

> I wonder how many there are here, that feel that they don't have much help or

support in the real world??  Oh, I've been there!  Having expectations on

some family members and certainly getting nothing back.  Yup, the list of the

people that I thought were friends and who didn't even call during the treatment

time or the cancer.

>

>

> Well, I think it very well could have been my Higher Power preparing me for

what was to come!!  Many folks in these groups that know my walk, constantly

tell me how I'm an inspiration.  I certainly do not feel that way; but,

sadly, I can tell you, that a few in my husband's family and some friends,either

do not see it in that way or just couldn't be bothered to think about it

anyway.  Yup, it hurt big time!!  Still to this day, I can not wrap my

mind around that type of behavior!!  Thank heavens too, because I wouldn't

want to be me if I was that self-centered. 

>

>

> But, it sure did clean out some of the Pollyanna in me!  I've been so

blessed to be living in this RV park with the west coasts big trees around

me.  It gave me a lot of time to search my soul and ask myself where I was

going and with whom.  I sure didn't want those two-faced people in my life,

friends or family.  However, it gave me an opportunity to peek out of my

circle and see some gals that looked a little lonely and afraid sometimes. 

So, I have some new friendships, I have the old friendships that did last and I

have my family.

> Now that I have been somewhat prepared, mostly I have my grip on my Higher

Power again and that makes me tough.  I don't have to go weeding people out

of my life now and I'm coming up to my biggest battle for my liver yet. 

Chances are extremely high that I'm not going to come out of this alive. 

But, you know, I'm not scared!!!  I feel very safe with my Higher Power in

the drivers seat and the friends that I could keep.  I've cleaned my side of

the street.  I constantly tell those that I love the most - that I love them.

  Even my Dad!!  LOL  That little old guy now expects to get a " I love

you Dad " and a kiss on his head.  I think that the only thing that worries me

a bit, is the pain!!  However, there are a whole lot of folks in this group

that live in that pain, so I'm blessed to be directed here.

>

> Whoops, I actually started this to say to Annie - ask for that help!! 

There are really people out there that will help while the ones we thought

would, won't.  You have no reason to be a martyr about this.  You've had a

rough road and it's OK to ask for help.  I would say definitely, if you

belong to a church, talk with the minister about it.  He/she will definitely

know some folks.  But the bottom line is - be all right with the big Spirit

and I'm sure that your needs will be filled and likely not from where you might

think.

>

> Luv Gloria

>

>

>

>

>

>

> ________________________________

>

>

> thank you so much

>

> Annie

> > To: livercirrhosissupport

>

>

>

>

>

>

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Posted
Posted

Bonnie

Now I'll try to finish my thoughts!!

Six weeks after my liver surgeryit was still unbelievably horrible in my home. 

So, I brought our travel trailer out here to an RV park, to get away from it for

awhile.  He jumped on that, forced me into a so-called separation agreement and

it just got worse and worse.  At the end of Sept, I forced him to buy me this

39' RV, so that I had a roof over my head.

On Christmas Eve 2010, my husband passed away in the hospital of pneumonia!! 

Not only was his death an absolute shock; but, of course, his kids did not call

to even tell me he was in the hospital.  It was 2 months before I went to move

everything out of our mobile home.  Turned out, he hadn't paid the mortgage for

5 months, so we lost it.  Anyway, I found an Ultra Sound or CT Scan report near

his computer.  Don't know how his kids missed it after their raid, the day

their father died; but, I found it instead.  Turns out, my husband had large

tumours in both lungs.  So the pneumonia was only a complication of the lung

cancer that actually killed him.

When I did some research about lung cancer, I learned that it is the cancer that

affects the brain the fastest of any of the killers.  It has allowed me to find

some forgiveness in my heart for him.  After all, we had been together for 21

yrs.  The absolute very first thing that I did not understand about his

behaviour, was that he was being sooo nasty even though I was waiting for that

very scary operation.  It was like he had no control over what would come out

of his mouth and then would defend himself even though I saw a look of confusion

a few times.  That was not the type of man that he was!!  There just would

never be a time, if he was himself, that I would have ever had to think whether

he would be my strength or not.  It would have been beyond everything that he

stood for as a man, to be anything but my oak tree.  Then there was the time

that he stood looking at me in my office and actually liedto me twice.  I was

flabbergasted!! 

Never, even a hint, would I have believed that it was possible for him to do

that.  He hadn't done it prior to that day, so I sure wasn't prepared for it. 

Therefore, yes, I believe he was suffering badly from the encephalopathy, caused

by lung cancer.  

However, I'm certainly not suggesting that you stay for this kind of abuse.  It

would be that crack cocaine that would scare the socks off my feet.  I simply

would never allow that in or around my home.  I do not feel guilty for leaving

him; because, it was horrible being there.  I gave up a whole lot of material

crap in order to feel safe again; but, none of it was worth my life (or his). 

I feel good now because my niece (surrogate daughter) and her girls (surrogate

grandchildren) have the special furniture etc.  It would have been hers when I

go anyway.  She just got it early - sort of.

One other thing that I do know about alcoholism.  The more you threaten to

leave and don't, the more he thinks he's getting away with such terrible

behaviour.  I do know that if it was just alcoholism, he would be feeling like

such a low life for what he has been doing, although he likely wouldn't own the

behaviour.  But, I don't know about that crack.  Finally, if he's out there

drinking his liver to death, there is not much you can do about it.  Maybe it

sounds awful; but, honestly, he appears to have made his choice.  I had not had

a drink in 15 yrs when I learned about my infection.  Shortly after that, I

realized that " to drink is to die " .

I'm sorry that I have been so long in this post; but, I would just like you to

understand that you do not have to stay when he chooses to drink and drug. 

Doesn't matter about that MELD score.  Drs. will not touch him unless he can

prove he's been sober at least one year.  In this case, I would suggest that he

should be able to also show that he has no interest in drinking ever again. 

Liver or no liver.  Receiving a transplant is a very great gift and should be

treated with much gratitude.  To go right back drinking again would seem like a

sin, as far as I'm concerned.

Luv Gloria

________________________________

 

My husband has a MELD score of 15, this was last evaluated last year.  He has

been drinking and smoking crack cocaine.  He just got out of a residential

rehab and is back out there.  I go to school full time and of course he gets

disability.  Lately he has gone from being so loving to a very mean man. 

(while sober) he goes from being nice to extremely verbally abusive. None of

what he is saying is making sense to me, not that his words dont make sense, but

WHAT he was saying was not nice.  I have decided to leave him, again he

promises to quit drinking telling me that he made a deal with God. I dont know

if it is Hepatic encephalopathy or if it is the alcoholism.  Does anyone have

any experience with this part of the disease???  Thanks, Bonnie

________________________________

To: livercirrhosissupport

Sent: Thursday, September 22, 2011 7:35 AM

Subject: Re: Help

 

awesome post to read first thing in the morning..good job!!!god bless you!!!

>

> I wonder how many there are here, that feel that they don't have much help or

support in the real world??  Oh, I've been there!  Having expectations on

some family members and certainly getting nothing back.  Yup, the list of the

people that I thought were friends and who didn't even call during the treatment

time or the cancer.

>

>

> Well, I think it very well could have been my Higher Power preparing me for

what was to come!!  Many folks in these groups that know my walk, constantly

tell me how I'm an inspiration.  I certainly do not feel that way; but,

sadly, I can tell you, that a few in my husband's family and some friends,either

do not see it in that way or just couldn't be bothered to think about it

anyway.  Yup, it hurt big time!!  Still to this day, I can not wrap my

mind around that type of behavior!!  Thank heavens too, because I wouldn't

want to be me if I was that self-centered. 

>

>

> But, it sure did clean out some of the Pollyanna in me!  I've been so

blessed to be living in this RV park with the west coasts big trees around

me.  It gave me a lot of time to search my soul and ask myself where I was

going and with whom.  I sure didn't want those two-faced people in my life,

friends or family.  However, it gave me an opportunity to peek out of my

circle and see some gals that looked a little lonely and afraid sometimes. 

So, I have some new friendships, I have the old friendships that did last and I

have my family.

> Now that I have been somewhat prepared, mostly I have my grip on my Higher

Power again and that makes me tough.  I don't have to go weeding people out

of my life now and I'm coming up to my biggest battle for my liver yet. 

Chances are extremely high that I'm not going to come out of this alive. 

But, you know, I'm not scared!!!  I feel very safe with my Higher Power in

the drivers seat and the friends that I could keep.  I've cleaned my side of

the street.  I constantly tell those that I love the most - that I love them.

  Even my Dad!!  LOL  That little old guy now expects to get a " I love

you Dad " and a kiss on his head.  I think that the only thing that worries me

a bit, is the pain!!  However, there are a whole lot of folks in this group

that live in that pain, so I'm blessed to be directed here.

>

> Whoops, I actually started this to say to Annie - ask for that help!! 

There are really people out there that will help while the ones we thought

would, won't.  You have no reason to be a martyr about this.  You've had a

rough road and it's OK to ask for help.  I would say definitely, if you

belong to a church, talk with the minister about it.  He/she will definitely

know some folks.  But the bottom line is - be all right with the big Spirit

and I'm sure that your needs will be filled and likely not from where you might

think.

>

> Luv Gloria

>

>

>

>

>

>

> ________________________________

>

>

> thank you so much

>

> Annie

> > To: livercirrhosissupport

>

>

>

>

>

>

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Posted
Posted

Gloria, Thank you so  much for your note. I'm glad it was long. I know that my

husband has had a fever of 103.7 for the last two days, and sleeps a lot. 

However, he gets up for a time and then sleeps again.  I am thinking that he

needs to go to the hospital, but am unsure what to say.  He at the very least

should get some labs done, dont you think?  His next appointment for the hep

doc, is in December and that is the earliest.  I appreciate what you said about

the your husband being mean to you.  My husband has always been nice to me up

until now, and we have been together 5 years. Which is why I'm wondering about

the Hep Enc.  I guess one minute he's nice and the next hes irritable and very

grumpy. I wonder if anyone else wondered if their spouse had hep enc, and if it

turned out that they had.  He also has hep c.  The doctors at Lahey clinic in

MA gave him 2 years on this liver...  Thanks again Gloria.

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Tuesday, September 27, 2011 12:44 AM

Subject: Re: hepatic encephalopathy

 

Bonnie

Now I'll try to finish my thoughts!!

Six weeks after my liver surgeryit was still unbelievably horrible in my home. 

So, I brought our travel trailer out here to an RV park, to get away from it for

awhile.  He jumped on that, forced me into a so-called separation agreement and

it just got worse and worse.  At the end of Sept, I forced him to buy me this

39' RV, so that I had a roof over my head.

On Christmas Eve 2010, my husband passed away in the hospital of pneumonia!! 

Not only was his death an absolute shock; but, of course, his kids did not call

to even tell me he was in the hospital.  It was 2 months before I went to move

everything out of our mobile home.  Turned out, he hadn't paid the mortgage for

5 months, so we lost it.  Anyway, I found an Ultra Sound or CT Scan report near

his computer.  Don't know how his kids missed it after their raid, the day

their father died; but, I found it instead.  Turns out, my husband had large

tumours in both lungs.  So the pneumonia was only a complication of the lung

cancer that actually killed him.

When I did some research about lung cancer, I learned that it is the cancer that

affects the brain the fastest of any of the killers.  It has allowed me to find

some forgiveness in my heart for him.  After all, we had been together for 21

yrs.  The absolute very first thing that I did not understand about his

behaviour, was that he was being sooo nasty even though I was waiting for that

very scary operation.  It was like he had no control over what would come out

of his mouth and then would defend himself even though I saw a look of confusion

a few times.  That was not the type of man that he was!!  There just would

never be a time, if he was himself, that I would have ever had to think whether

he would be my strength or not.  It would have been beyond everything that he

stood for as a man, to be anything but my oak tree.  Then there was the time

that he stood looking at me in my office and actually liedto me twice.  I was

flabbergasted!! 

Never, even a hint, would I have believed that it was possible for him to do

that.  He hadn't done it prior to that day, so I sure wasn't prepared for it. 

Therefore, yes, I believe he was suffering badly from the encephalopathy, caused

by lung cancer.  

However, I'm certainly not suggesting that you stay for this kind of abuse.  It

would be that crack cocaine that would scare the socks off my feet.  I simply

would never allow that in or around my home.  I do not feel guilty for leaving

him; because, it was horrible being there.  I gave up a whole lot of material

crap in order to feel safe again; but, none of it was worth my life (or his). 

I feel good now because my niece (surrogate daughter) and her girls (surrogate

grandchildren) have the special furniture etc.  It would have been hers when I

go anyway.  She just got it early - sort of.

One other thing that I do know about alcoholism.  The more you threaten to

leave and don't, the more he thinks he's getting away with such terrible

behaviour.  I do know that if it was just alcoholism, he would be feeling like

such a low life for what he has been doing, although he likely wouldn't own the

behaviour.  But, I don't know about that crack.  Finally, if he's out there

drinking his liver to death, there is not much you can do about it.  Maybe it

sounds awful; but, honestly, he appears to have made his choice.  I had not had

a drink in 15 yrs when I learned about my infection.  Shortly after that, I

realized that " to drink is to die " .

I'm sorry that I have been so long in this post; but, I would just like you to

understand that you do not have to stay when he chooses to drink and drug. 

Doesn't matter about that MELD score.  Drs. will not touch him unless he can

prove he's been sober at least one year.  In this case, I would suggest that he

should be able to also show that he has no interest in drinking ever again. 

Liver or no liver.  Receiving a transplant is a very great gift and should be

treated with much gratitude.  To go right back drinking again would seem like a

sin, as far as I'm concerned.

Luv Gloria

________________________________

 

My husband has a MELD score of 15, this was last evaluated last year.  He has

been drinking and smoking crack cocaine.  He just got out of a residential

rehab and is back out there.  I go to school full time and of course he gets

disability.  Lately he has gone from being so loving to a very mean man. 

(while sober) he goes from being nice to extremely verbally abusive. None of

what he is saying is making sense to me, not that his words dont make sense, but

WHAT he was saying was not nice.  I have decided to leave him, again he

promises to quit drinking telling me that he made a deal with God. I dont know

if it is Hepatic encephalopathy or if it is the alcoholism.  Does anyone have

any experience with this part of the disease???  Thanks, Bonnie

________________________________

To: livercirrhosissupport

Sent: Thursday, September 22, 2011 7:35 AM

Subject: Re: Help

 

awesome post to read first thing in the morning..good job!!!god bless you!!!

>

> I wonder how many there are here, that feel that they don't have much help or

support in the real world??  Oh, I've been there!  Having expectations on

some family members and certainly getting nothing back.  Yup, the list of the

people that I thought were friends and who didn't even call during the treatment

time or the cancer.

>

>

> Well, I think it very well could have been my Higher Power preparing me for

what was to come!!  Many folks in these groups that know my walk, constantly

tell me how I'm an inspiration.  I certainly do not feel that way; but,

sadly, I can tell you, that a few in my husband's family and some friends,either

do not see it in that way or just couldn't be bothered to think about it

anyway.  Yup, it hurt big time!!  Still to this day, I can not wrap my

mind around that type of behavior!!  Thank heavens too, because I wouldn't

want to be me if I was that self-centered. 

>

>

> But, it sure did clean out some of the Pollyanna in me!  I've been so

blessed to be living in this RV park with the west coasts big trees around

me.  It gave me a lot of time to search my soul and ask myself where I was

going and with whom.  I sure didn't want those two-faced people in my life,

friends or family.  However, it gave me an opportunity to peek out of my

circle and see some gals that looked a little lonely and afraid sometimes. 

So, I have some new friendships, I have the old friendships that did last and I

have my family.

> Now that I have been somewhat prepared, mostly I have my grip on my Higher

Power again and that makes me tough.  I don't have to go weeding people out

of my life now and I'm coming up to my biggest battle for my liver yet. 

Chances are extremely high that I'm not going to come out of this alive. 

But, you know, I'm not scared!!!  I feel very safe with my Higher Power in

the drivers seat and the friends that I could keep.  I've cleaned my side of

the street.  I constantly tell those that I love the most - that I love them.

  Even my Dad!!  LOL  That little old guy now expects to get a " I love

you Dad " and a kiss on his head.  I think that the only thing that worries me

a bit, is the pain!!  However, there are a whole lot of folks in this group

that live in that pain, so I'm blessed to be directed here.

>

> Whoops, I actually started this to say to Annie - ask for that help!! 

There are really people out there that will help while the ones we thought

would, won't.  You have no reason to be a martyr about this.  You've had a

rough road and it's OK to ask for help.  I would say definitely, if you

belong to a church, talk with the minister about it.  He/she will definitely

know some folks.  But the bottom line is - be all right with the big Spirit

and I'm sure that your needs will be filled and likely not from where you might

think.

>

> Luv Gloria

>

>

>

>

>

>

> ________________________________

>

>

> thank you so much

>

> Annie

> > To: livercirrhosissupport

>

>

>

>

>

>

Link to comment
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Posted
Posted

Dear Bonnie, Some clinics around the country use ammonia readings to treat HE

 but here at CU in Aurora Colorado at the hepatology clinic they mostly go by

what the wife or family member says. If they report that the patient is acting

weird, they will do a trial of lactulose at the smallest dose. Ony then they

might check an ammonia reading. The reason is that ammonia is really hard to get

accurate without an arterial blood draw.Muscles produce some ammonia.

Venousblood draws can be off because  ammonia from muscles shows up in the

reading. Artery punctures are said to be much more painful than a venous

puncture but don't usually include ammonia from the muscles.  I do know that

our hep clinic is very reluctant to puncture an artery for any blood work. Bobby

 

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Tuesday, September 27, 2011 11:54 AM

Subject: Re: hepatic encephalopathy

 

Gloria, Thank you so  much for your note. I'm glad it was long. I know that my

husband has had a fever of 103.7 for the last two days, and sleeps a lot. 

However, he gets up for a time and then sleeps again.  I am thinking that he

needs to go to the hospital, but am unsure what to say.  He at the very least

should get some labs done, dont you think?  His next appointment for the hep

doc, is in December and that is the earliest.  I appreciate what you said about

the your husband being mean to you.  My husband has always been nice to me up

until now, and we have been together 5 years. Which is why I'm wondering about

the Hep Enc.  I guess one minute he's nice and the next hes irritable and very

grumpy. I wonder if anyone else wondered if their spouse had hep enc, and if it

turned out that they had.  He also has hep c.  The doctors at Lahey clinic in

MA gave him 2 years on this liver...  Thanks again Gloria.

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Tuesday, September 27, 2011 12:44 AM

Subject: Re: hepatic encephalopathy

 

Bonnie

Now I'll try to finish my thoughts!!

Six weeks after my liver surgeryit was still unbelievably horrible in my home. 

So, I brought our travel trailer out here to an RV park, to get away from it for

awhile.  He jumped on that, forced me into a so-called separation agreement and

it just got worse and worse.  At the end of Sept, I forced him to buy me this

39' RV, so that I had a roof over my head.

On Christmas Eve 2010, my husband passed away in the hospital of pneumonia!! 

Not only was his death an absolute shock; but, of course, his kids did not call

to even tell me he was in the hospital.  It was 2 months before I went to move

everything out of our mobile home.  Turned out, he hadn't paid the mortgage for

5 months, so we lost it.  Anyway, I found an Ultra Sound or CT Scan report near

his computer.  Don't know how his kids missed it after their raid, the day

their father died; but, I found it instead.  Turns out, my husband had large

tumours in both lungs.  So the pneumonia was only a complication of the lung

cancer that actually killed him.

When I did some research about lung cancer, I learned that it is the cancer that

affects the brain the fastest of any of the killers.  It has allowed me to find

some forgiveness in my heart for him.  After all, we had been together for 21

yrs.  The absolute very first thing that I did not understand about his

behaviour, was that he was being sooo nasty even though I was waiting for that

very scary operation.  It was like he had no control over what would come out

of his mouth and then would defend himself even though I saw a look of confusion

a few times.  That was not the type of man that he was!!  There just would

never be a time, if he was himself, that I would have ever had to think whether

he would be my strength or not.  It would have been beyond everything that he

stood for as a man, to be anything but my oak tree.  Then there was the time

that he stood looking at me in my office and actually liedto me twice.  I was

flabbergasted!! 

Never, even a hint, would I have believed that it was possible for him to do

that.  He hadn't done it prior to that day, so I sure wasn't prepared for it. 

Therefore, yes, I believe he was suffering badly from the encephalopathy, caused

by lung cancer.  

However, I'm certainly not suggesting that you stay for this kind of abuse.  It

would be that crack cocaine that would scare the socks off my feet.  I simply

would never allow that in or around my home.  I do not feel guilty for leaving

him; because, it was horrible being there.  I gave up a whole lot of material

crap in order to feel safe again; but, none of it was worth my life (or his). 

I feel good now because my niece (surrogate daughter) and her girls (surrogate

grandchildren) have the special furniture etc.  It would have been hers when I

go anyway.  She just got it early - sort of.

One other thing that I do know about alcoholism.  The more you threaten to

leave and don't, the more he thinks he's getting away with such terrible

behaviour.  I do know that if it was just alcoholism, he would be feeling like

such a low life for what he has been doing, although he likely wouldn't own the

behaviour.  But, I don't know about that crack.  Finally, if he's out there

drinking his liver to death, there is not much you can do about it.  Maybe it

sounds awful; but, honestly, he appears to have made his choice.  I had not had

a drink in 15 yrs when I learned about my infection.  Shortly after that, I

realized that " to drink is to die " .

I'm sorry that I have been so long in this post; but, I would just like you to

understand that you do not have to stay when he chooses to drink and drug. 

Doesn't matter about that MELD score.  Drs. will not touch him unless he can

prove he's been sober at least one year.  In this case, I would suggest that he

should be able to also show that he has no interest in drinking ever again. 

Liver or no liver.  Receiving a transplant is a very great gift and should be

treated with much gratitude.  To go right back drinking again would seem like a

sin, as far as I'm concerned.

Luv Gloria

________________________________

 

My husband has a MELD score of 15, this was last evaluated last year.  He has

been drinking and smoking crack cocaine.  He just got out of a residential

rehab and is back out there.  I go to school full time and of course he gets

disability.  Lately he has gone from being so loving to a very mean man. 

(while sober) he goes from being nice to extremely verbally abusive. None of

what he is saying is making sense to me, not that his words dont make sense, but

WHAT he was saying was not nice.  I have decided to leave him, again he

promises to quit drinking telling me that he made a deal with God. I dont know

if it is Hepatic encephalopathy or if it is the alcoholism.  Does anyone have

any experience with this part of the disease???  Thanks, Bonnie

________________________________

To: livercirrhosissupport

Sent: Thursday, September 22, 2011 7:35 AM

Subject: Re: Help

 

awesome post to read first thing in the morning..good job!!!god bless you!!!

>

> I wonder how many there are here, that feel that they don't have much help or

support in the real world??  Oh, I've been there!  Having expectations on

some family members and certainly getting nothing back.  Yup, the list of the

people that I thought were friends and who didn't even call during the treatment

time or the cancer.

>

>

> Well, I think it very well could have been my Higher Power preparing me for

what was to come!!  Many folks in these groups that know my walk, constantly

tell me how I'm an inspiration.  I certainly do not feel that way; but,

sadly, I can tell you, that a few in my husband's family and some friends,either

do not see it in that way or just couldn't be bothered to think about it

anyway.  Yup, it hurt big time!!  Still to this day, I can not wrap my

mind around that type of behavior!!  Thank heavens too, because I wouldn't

want to be me if I was that self-centered. 

>

>

> But, it sure did clean out some of the Pollyanna in me!  I've been so

blessed to be living in this RV park with the west coasts big trees around

me.  It gave me a lot of time to search my soul and ask myself where I was

going and with whom.  I sure didn't want those two-faced people in my life,

friends or family.  However, it gave me an opportunity to peek out of my

circle and see some gals that looked a little lonely and afraid sometimes. 

So, I have some new friendships, I have the old friendships that did last and I

have my family.

> Now that I have been somewhat prepared, mostly I have my grip on my Higher

Power again and that makes me tough.  I don't have to go weeding people out

of my life now and I'm coming up to my biggest battle for my liver yet. 

Chances are extremely high that I'm not going to come out of this alive. 

But, you know, I'm not scared!!!  I feel very safe with my Higher Power in

the drivers seat and the friends that I could keep.  I've cleaned my side of

the street.  I constantly tell those that I love the most - that I love them.

  Even my Dad!!  LOL  That little old guy now expects to get a " I love

you Dad " and a kiss on his head.  I think that the only thing that worries me

a bit, is the pain!!  However, there are a whole lot of folks in this group

that live in that pain, so I'm blessed to be directed here.

>

> Whoops, I actually started this to say to Annie - ask for that help!! 

There are really people out there that will help while the ones we thought

would, won't.  You have no reason to be a martyr about this.  You've had a

rough road and it's OK to ask for help.  I would say definitely, if you

belong to a church, talk with the minister about it.  He/she will definitely

know some folks.  But the bottom line is - be all right with the big Spirit

and I'm sure that your needs will be filled and likely not from where you might

think.

>

> Luv Gloria

>

>

>

>

>

>

> ________________________________

>

>

> thank you so much

>

> Annie

> > To: livercirrhosissupport

>

>

>

>

>

>

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Share on other sites
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Posted
Posted

Hi Bonnie:  I'm Jackie.  My husband had a liver transplant 5/26/10.  If I

were you I would be concerned about him running a fever.  There may be an

infection going on someplace and he needs to get checked out.  My husband and I

will celebrate 34 years of marriage this Saturday, thanks to his liver donor and

family.  has always been very docile, and the drs and nurses all said he

is a dream of a patient.  He is very cooperative.  However, when he

experienced his bouts of hepatic encephalopathy he would be stubborn about

taking his medicine.  (lactulose) He was also very sleepy.  I would wake him

and he would say " ok. in a minute " then 5 minutes would go by and I would wake

him again.  He would tell me I was a pain in the ass.  The first time it

happened I was very hurt and I cried but when it happened again 2 weeks later I

told him that it was my job to be a pain in the ass and I was getting real good

at it.  When he starts getting signs

of hepatic encephalopathy he really needs to go to the e.r and have blood work

done to confirm it.  They need to get that ammonia level back down.  If his

ammonia level continues to rise he could go into a coma.  Don't be afraid to

take him to the e.r and have him checked.  They will know what to do and you

will feel relieved that he is in the hands of the professionals who will treat

him accordingly.  Make sure you have legal and healthcare power of attorney. 

On my husband's second bout of elevated ammonia I called for an ambulance.  The

same two goons showed up as had shown up a week before and asked him a few ?'s

and asked him if he thought he needed to go to the hospital.  He told them he

was fine, and I explained to the one attendant that he was not, in fact, fine. 

If his ammonia level continued to rise he would lapse into a coma and die.  To

my horror the attendant answered " maybe he wants to let nature take it's

course. "   Thank God

they had a policeman with them.  I went and got the lactulose and told them

" watch this " , put it to his lips and he turned his head.  The attendants asked

the policeman for his opinion to which he answered, " I'm a witness.  He refused

his meds.  I'd take him to the hospital. "   After that, as soon as his head was

clear I called a lawyer to draw up the papers and I had power of attorney.  If

telling of my experience can help someone else that's a good thing.  Keep in

touch.  We all care for you here.  Love, Jackie

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Tuesday, September 27, 2011 1:54 PM

Subject: Re: hepatic encephalopathy

 

Gloria, Thank you so  much for your note. I'm glad it was long. I know that my

husband has had a fever of 103.7 for the last two days, and sleeps a lot. 

However, he gets up for a time and then sleeps again.  I am thinking that he

needs to go to the hospital, but am unsure what to say.  He at the very least

should get some labs done, dont you think?  His next appointment for the hep

doc, is in December and that is the earliest.  I appreciate what you said about

the your husband being mean to you.  My husband has always been nice to me up

until now, and we have been together 5 years. Which is why I'm wondering about

the Hep Enc.  I guess one minute he's nice and the next hes irritable and very

grumpy. I wonder if anyone else wondered if their spouse had hep enc, and if it

turned out that they had.  He also has hep c.  The doctors at Lahey clinic in

MA gave him 2 years on this liver...  Thanks again Gloria.

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Tuesday, September 27, 2011 12:44 AM

Subject: Re: hepatic encephalopathy

 

Bonnie

Now I'll try to finish my thoughts!!

Six weeks after my liver surgeryit was still unbelievably horrible in my home. 

So, I brought our travel trailer out here to an RV park, to get away from it for

awhile.  He jumped on that, forced me into a so-called separation agreement and

it just got worse and worse.  At the end of Sept, I forced him to buy me this

39' RV, so that I had a roof over my head.

On Christmas Eve 2010, my husband passed away in the hospital of pneumonia!! 

Not only was his death an absolute shock; but, of course, his kids did not call

to even tell me he was in the hospital.  It was 2 months before I went to move

everything out of our mobile home.  Turned out, he hadn't paid the mortgage for

5 months, so we lost it.  Anyway, I found an Ultra Sound or CT Scan report near

his computer.  Don't know how his kids missed it after their raid, the day

their father died; but, I found it instead.  Turns out, my husband had large

tumours in both lungs.  So the pneumonia was only a complication of the lung

cancer that actually killed him.

When I did some research about lung cancer, I learned that it is the cancer that

affects the brain the fastest of any of the killers.  It has allowed me to find

some forgiveness in my heart for him.  After all, we had been together for 21

yrs.  The absolute very first thing that I did not understand about his

behaviour, was that he was being sooo nasty even though I was waiting for that

very scary operation.  It was like he had no control over what would come out

of his mouth and then would defend himself even though I saw a look of confusion

a few times.  That was not the type of man that he was!!  There just would

never be a time, if he was himself, that I would have ever had to think whether

he would be my strength or not.  It would have been beyond everything that he

stood for as a man, to be anything but my oak tree.  Then there was the time

that he stood looking at me in my office and actually liedto me twice.  I was

flabbergasted!! 

Never, even a hint, would I have believed that it was possible for him to do

that.  He hadn't done it prior to that day, so I sure wasn't prepared for it. 

Therefore, yes, I believe he was suffering badly from the encephalopathy, caused

by lung cancer.  

However, I'm certainly not suggesting that you stay for this kind of abuse.  It

would be that crack cocaine that would scare the socks off my feet.  I simply

would never allow that in or around my home.  I do not feel guilty for leaving

him; because, it was horrible being there.  I gave up a whole lot of material

crap in order to feel safe again; but, none of it was worth my life (or his). 

I feel good now because my niece (surrogate daughter) and her girls (surrogate

grandchildren) have the special furniture etc.  It would have been hers when I

go anyway.  She just got it early - sort of.

One other thing that I do know about alcoholism.  The more you threaten to

leave and don't, the more he thinks he's getting away with such terrible

behaviour.  I do know that if it was just alcoholism, he would be feeling like

such a low life for what he has been doing, although he likely wouldn't own the

behaviour.  But, I don't know about that crack.  Finally, if he's out there

drinking his liver to death, there is not much you can do about it.  Maybe it

sounds awful; but, honestly, he appears to have made his choice.  I had not had

a drink in 15 yrs when I learned about my infection.  Shortly after that, I

realized that " to drink is to die " .

I'm sorry that I have been so long in this post; but, I would just like you to

understand that you do not have to stay when he chooses to drink and drug. 

Doesn't matter about that MELD score.  Drs. will not touch him unless he can

prove he's been sober at least one year.  In this case, I would suggest that he

should be able to also show that he has no interest in drinking ever again. 

Liver or no liver.  Receiving a transplant is a very great gift and should be

treated with much gratitude.  To go right back drinking again would seem like a

sin, as far as I'm concerned.

Luv Gloria

________________________________

 

My husband has a MELD score of 15, this was last evaluated last year.  He has

been drinking and smoking crack cocaine.  He just got out of a residential

rehab and is back out there.  I go to school full time and of course he gets

disability.  Lately he has gone from being so loving to a very mean man. 

(while sober) he goes from being nice to extremely verbally abusive. None of

what he is saying is making sense to me, not that his words dont make sense, but

WHAT he was saying was not nice.  I have decided to leave him, again he

promises to quit drinking telling me that he made a deal with God. I dont know

if it is Hepatic encephalopathy or if it is the alcoholism.  Does anyone have

any experience with this part of the disease???  Thanks, Bonnie

________________________________

To: livercirrhosissupport

Sent: Thursday, September 22, 2011 7:35 AM

Subject: Re: Help

 

awesome post to read first thing in the morning..good job!!!god bless you!!!

>

> I wonder how many there are here, that feel that they don't have much help or

support in the real world??  Oh, I've been there!  Having expectations on

some family members and certainly getting nothing back.  Yup, the list of the

people that I thought were friends and who didn't even call during the treatment

time or the cancer.

>

>

> Well, I think it very well could have been my Higher Power preparing me for

what was to come!!  Many folks in these groups that know my walk, constantly

tell me how I'm an inspiration.  I certainly do not feel that way; but,

sadly, I can tell you, that a few in my husband's family and some friends,either

do not see it in that way or just couldn't be bothered to think about it

anyway.  Yup, it hurt big time!!  Still to this day, I can not wrap my

mind around that type of behavior!!  Thank heavens too, because I wouldn't

want to be me if I was that self-centered. 

>

>

> But, it sure did clean out some of the Pollyanna in me!  I've been so

blessed to be living in this RV park with the west coasts big trees around

me.  It gave me a lot of time to search my soul and ask myself where I was

going and with whom.  I sure didn't want those two-faced people in my life,

friends or family.  However, it gave me an opportunity to peek out of my

circle and see some gals that looked a little lonely and afraid sometimes. 

So, I have some new friendships, I have the old friendships that did last and I

have my family.

> Now that I have been somewhat prepared, mostly I have my grip on my Higher

Power again and that makes me tough.  I don't have to go weeding people out

of my life now and I'm coming up to my biggest battle for my liver yet. 

Chances are extremely high that I'm not going to come out of this alive. 

But, you know, I'm not scared!!!  I feel very safe with my Higher Power in

the drivers seat and the friends that I could keep.  I've cleaned my side of

the street.  I constantly tell those that I love the most - that I love them.

  Even my Dad!!  LOL  That little old guy now expects to get a " I love

you Dad " and a kiss on his head.  I think that the only thing that worries me

a bit, is the pain!!  However, there are a whole lot of folks in this group

that live in that pain, so I'm blessed to be directed here.

>

> Whoops, I actually started this to say to Annie - ask for that help!! 

There are really people out there that will help while the ones we thought

would, won't.  You have no reason to be a martyr about this.  You've had a

rough road and it's OK to ask for help.  I would say definitely, if you

belong to a church, talk with the minister about it.  He/she will definitely

know some folks.  But the bottom line is - be all right with the big Spirit

and I'm sure that your needs will be filled and likely not from where you might

think.

>

> Luv Gloria

>

>

>

>

>

>

> ________________________________

>

>

> thank you so much

>

> Annie

> > To: livercirrhosissupport

>

>

>

>

>

>

Link to comment
Share on other sites
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Posted
Posted

Bonnie

I feel very sad for you!!  It's a lousy thing to live with, even if we do

understand.  Yup, I never knew from one minute to the next what he would be

like.  At least you have some understanding of the disease now.

I'm also sad because it appears that your husband has chosen death over a battle

with the dragon!  But, perhaps it is the only way he can cope, with the Hep C

having done so much damage and the enceph causing so much confusion.  I agree

with Bobby!  We have to wonder how many people have had the brain disorder long

before the true reason has come to light.

I have to warn my son about this since he will be my main caregiver when I get

sick.  Fortunately, he is also an ardent researcher.  He won't just sit back,

not understanding.  The same thing with my mother.  However, it was

particularly hard to tell her about the return of the cancer; because, she also

knows more about it than the average momma bear.

________________________________

 

Gloria, Thank you so  much for your note. I'm glad it was long. I know that my

husband has had a fever of 103.7 for the last two days, and sleeps a lot. 

However, he gets up for a time and then sleeps again.  I am thinking that he

needs to go to the hospital, but am unsure what to say.  He at the very least

should get some labs done, dont you think?  His next appointment for the hep

doc, is in December and that is the earliest.  I appreciate what you said about

the your husband being mean to you.  My husband has always been nice to me up

until now, and we have been together 5 years. Which is why I'm wondering about

the Hep Enc.  I guess one minute he's nice and the next hes irritable and very

grumpy. I wonder if anyone else wondered if their spouse had hep enc, and if it

turned out that they had.  He also has hep c.  The doctors at Lahey clinic in

MA gave him 2 years on this liver...  Thanks again Gloria.

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Tuesday, September 27, 2011 12:44 AM

Subject: Re: hepatic encephalopathy

 

Bonnie

Now I'll try to finish my thoughts!!

Six weeks after my liver surgeryit was still unbelievably horrible in my home. 

So, I brought our travel trailer out here to an RV park, to get away from it for

awhile.  He jumped on that, forced me into a so-called separation agreement and

it just got worse and worse.  At the end of Sept, I forced him to buy me this

39' RV, so that I had a roof over my head.

On Christmas Eve 2010, my husband passed away in the hospital of pneumonia!! 

Not only was his death an absolute shock; but, of course, his kids did not call

to even tell me he was in the hospital.  It was 2 months before I went to move

everything out of our mobile home.  Turned out, he hadn't paid the mortgage for

5 months, so we lost it.  Anyway, I found an Ultra Sound or CT Scan report near

his computer.  Don't know how his kids missed it after their raid, the day

their father died; but, I found it instead.  Turns out, my husband had large

tumours in both lungs.  So the pneumonia was only a complication of the lung

cancer that actually killed him.

When I did some research about lung cancer, I learned that it is the cancer that

affects the brain the fastest of any of the killers.  It has allowed me to find

some forgiveness in my heart for him.  After all, we had been together for 21

yrs.  The absolute very first thing that I did not understand about his

behaviour, was that he was being sooo nasty even though I was waiting for that

very scary operation.  It was like he had no control over what would come out

of his mouth and then would defend himself even though I saw a look of confusion

a few times.  That was not the type of man that he was!!  There just would

never be a time, if he was himself, that I would have ever had to think whether

he would be my strength or not.  It would have been beyond everything that he

stood for as a man, to be anything but my oak tree.  Then there was the time

that he stood looking at me in my office and actually liedto me twice.  I was

flabbergasted!! 

Never, even a hint, would I have believed that it was possible for him to do

that.  He hadn't done it prior to that day, so I sure wasn't prepared for it. 

Therefore, yes, I believe he was suffering badly from the encephalopathy, caused

by lung cancer.  

However, I'm certainly not suggesting that you stay for this kind of abuse.  It

would be that crack cocaine that would scare the socks off my feet.  I simply

would never allow that in or around my home.  I do not feel guilty for leaving

him; because, it was horrible being there.  I gave up a whole lot of material

crap in order to feel safe again; but, none of it was worth my life (or his). 

I feel good now because my niece (surrogate daughter) and her girls (surrogate

grandchildren) have the special furniture etc.  It would have been hers when I

go anyway.  She just got it early - sort of.

One other thing that I do know about alcoholism.  The more you threaten to

leave and don't, the more he thinks he's getting away with such terrible

behaviour.  I do know that if it was just alcoholism, he would be feeling like

such a low life for what he has been doing, although he likely wouldn't own the

behaviour.  But, I don't know about that crack.  Finally, if he's out there

drinking his liver to death, there is not much you can do about it.  Maybe it

sounds awful; but, honestly, he appears to have made his choice.  I had not had

a drink in 15 yrs when I learned about my infection.  Shortly after that, I

realized that " to drink is to die " .

I'm sorry that I have been so long in this post; but, I would just like you to

understand that you do not have to stay when he chooses to drink and drug. 

Doesn't matter about that MELD score.  Drs. will not touch him unless he can

prove he's been sober at least one year.  In this case, I would suggest that he

should be able to also show that he has no interest in drinking ever again. 

Liver or no liver.  Receiving a transplant is a very great gift and should be

treated with much gratitude.  To go right back drinking again would seem like a

sin, as far as I'm concerned.

Luv Gloria

________________________________

 

My husband has a MELD score of 15, this was last evaluated last year.  He has

been drinking and smoking crack cocaine.  He just got out of a residential

rehab and is back out there.  I go to school full time and of course he gets

disability.  Lately he has gone from being so loving to a very mean man. 

(while sober) he goes from being nice to extremely verbally abusive. None of

what he is saying is making sense to me, not that his words dont make sense, but

WHAT he was saying was not nice.  I have decided to leave him, again he

promises to quit drinking telling me that he made a deal with God. I dont know

if it is Hepatic encephalopathy or if it is the alcoholism.  Does anyone have

any experience with this part of the disease???  Thanks, Bonnie

________________________________

To: livercirrhosissupport

Sent: Thursday, September 22, 2011 7:35 AM

Subject: Re: Help

 

awesome post to read first thing in the morning..good job!!!god bless you!!!

>

> I wonder how many there are here, that feel that they don't have much help or

support in the real world??  Oh, I've been there!  Having expectations on

some family members and certainly getting nothing back.  Yup, the list of the

people that I thought were friends and who didn't even call during the treatment

time or the cancer.

>

>

> Well, I think it very well could have been my Higher Power preparing me for

what was to come!!  Many folks in these groups that know my walk, constantly

tell me how I'm an inspiration.  I certainly do not feel that way; but,

sadly, I can tell you, that a few in my husband's family and some friends,either

do not see it in that way or just couldn't be bothered to think about it

anyway.  Yup, it hurt big time!!  Still to this day, I can not wrap my

mind around that type of behavior!!  Thank heavens too, because I wouldn't

want to be me if I was that self-centered. 

>

>

> But, it sure did clean out some of the Pollyanna in me!  I've been so

blessed to be living in this RV park with the west coasts big trees around

me.  It gave me a lot of time to search my soul and ask myself where I was

going and with whom.  I sure didn't want those two-faced people in my life,

friends or family.  However, it gave me an opportunity to peek out of my

circle and see some gals that looked a little lonely and afraid sometimes. 

So, I have some new friendships, I have the old friendships that did last and I

have my family.

> Now that I have been somewhat prepared, mostly I have my grip on my Higher

Power again and that makes me tough.  I don't have to go weeding people out

of my life now and I'm coming up to my biggest battle for my liver yet. 

Chances are extremely high that I'm not going to come out of this alive. 

But, you know, I'm not scared!!!  I feel very safe with my Higher Power in

the drivers seat and the friends that I could keep.  I've cleaned my side of

the street.  I constantly tell those that I love the most - that I love them.

  Even my Dad!!  LOL  That little old guy now expects to get a " I love

you Dad " and a kiss on his head.  I think that the only thing that worries me

a bit, is the pain!!  However, there are a whole lot of folks in this group

that live in that pain, so I'm blessed to be directed here.

>

> Whoops, I actually started this to say to Annie - ask for that help!! 

There are really people out there that will help while the ones we thought

would, won't.  You have no reason to be a martyr about this.  You've had a

rough road and it's OK to ask for help.  I would say definitely, if you

belong to a church, talk with the minister about it.  He/she will definitely

know some folks.  But the bottom line is - be all right with the big Spirit

and I'm sure that your needs will be filled and likely not from where you might

think.

>

> Luv Gloria

>

>

>

>

>

>

> ________________________________

>

>

> thank you so much

>

> Annie

> > To: livercirrhosissupport

>

>

>

>

>

>

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Posted
Posted

Now that gives me the willys!!!  I had to have an artery puncture in order to

test for COPD.  I never want to go through that again.  I know my Dr. thought

she had set me up to have one in the spring; but, I didn't make any noise

whatsoever when I didn't get a call with an appointment.  I think that they

only reason for it was because I was having my teeth pulled surgically last

June.

________________________________

 

Dear Bonnie, Some clinics around the country use ammonia readings to treat HE

 but here at CU in Aurora Colorado at the hepatology clinic they mostly go by

what the wife or family member says. If they report that the patient is acting

weird, they will do a trial of lactulose at the smallest dose. Ony then they

might check an ammonia reading. The reason is that ammonia is really hard to get

accurate without an arterial blood draw.Muscles produce some ammonia.

Venousblood draws can be off because  ammonia from muscles shows up in the

reading. Artery punctures are said to be much more painful than a venous

puncture but don't usually include ammonia from the muscles.  I do know that

our hep clinic is very reluctant to puncture an artery for any blood work. Bobby

 

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Tuesday, September 27, 2011 11:54 AM

Subject: Re: hepatic encephalopathy

 

Gloria, Thank you so  much for your note. I'm glad it was long. I know that my

husband has had a fever of 103.7 for the last two days, and sleeps a lot. 

However, he gets up for a time and then sleeps again.  I am thinking that he

needs to go to the hospital, but am unsure what to say.  He at the very least

should get some labs done, dont you think?  His next appointment for the hep

doc, is in December and that is the earliest.  I appreciate what you said about

the your husband being mean to you.  My husband has always been nice to me up

until now, and we have been together 5 years. Which is why I'm wondering about

the Hep Enc.  I guess one minute he's nice and the next hes irritable and very

grumpy. I wonder if anyone else wondered if their spouse had hep enc, and if it

turned out that they had.  He also has hep c.  The doctors at Lahey clinic in

MA gave him 2 years on this liver...  Thanks again Gloria.

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Tuesday, September 27, 2011 12:44 AM

Subject: Re: hepatic encephalopathy

 

Bonnie

Now I'll try to finish my thoughts!!

Six weeks after my liver surgeryit was still unbelievably horrible in my home. 

So, I brought our travel trailer out here to an RV park, to get away from it for

awhile.  He jumped on that, forced me into a so-called separation agreement and

it just got worse and worse.  At the end of Sept, I forced him to buy me this

39' RV, so that I had a roof over my head.

On Christmas Eve 2010, my husband passed away in the hospital of pneumonia!! 

Not only was his death an absolute shock; but, of course, his kids did not call

to even tell me he was in the hospital.  It was 2 months before I went to move

everything out of our mobile home.  Turned out, he hadn't paid the mortgage for

5 months, so we lost it.  Anyway, I found an Ultra Sound or CT Scan report near

his computer.  Don't know how his kids missed it after their raid, the day

their father died; but, I found it instead.  Turns out, my husband had large

tumours in both lungs.  So the pneumonia was only a complication of the lung

cancer that actually killed him.

When I did some research about lung cancer, I learned that it is the cancer that

affects the brain the fastest of any of the killers.  It has allowed me to find

some forgiveness in my heart for him.  After all, we had been together for 21

yrs.  The absolute very first thing that I did not understand about his

behaviour, was that he was being sooo nasty even though I was waiting for that

very scary operation.  It was like he had no control over what would come out

of his mouth and then would defend himself even though I saw a look of confusion

a few times.  That was not the type of man that he was!!  There just would

never be a time, if he was himself, that I would have ever had to think whether

he would be my strength or not.  It would have been beyond everything that he

stood for as a man, to be anything but my oak tree.  Then there was the time

that he stood looking at me in my office and actually liedto me twice.  I was

flabbergasted!! 

Never, even a hint, would I have believed that it was possible for him to do

that.  He hadn't done it prior to that day, so I sure wasn't prepared for it. 

Therefore, yes, I believe he was suffering badly from the encephalopathy, caused

by lung cancer.  

However, I'm certainly not suggesting that you stay for this kind of abuse.  It

would be that crack cocaine that would scare the socks off my feet.  I simply

would never allow that in or around my home.  I do not feel guilty for leaving

him; because, it was horrible being there.  I gave up a whole lot of material

crap in order to feel safe again; but, none of it was worth my life (or his). 

I feel good now because my niece (surrogate daughter) and her girls (surrogate

grandchildren) have the special furniture etc.  It would have been hers when I

go anyway.  She just got it early - sort of.

One other thing that I do know about alcoholism.  The more you threaten to

leave and don't, the more he thinks he's getting away with such terrible

behaviour.  I do know that if it was just alcoholism, he would be feeling like

such a low life for what he has been doing, although he likely wouldn't own the

behaviour.  But, I don't know about that crack.  Finally, if he's out there

drinking his liver to death, there is not much you can do about it.  Maybe it

sounds awful; but, honestly, he appears to have made his choice.  I had not had

a drink in 15 yrs when I learned about my infection.  Shortly after that, I

realized that " to drink is to die " .

I'm sorry that I have been so long in this post; but, I would just like you to

understand that you do not have to stay when he chooses to drink and drug. 

Doesn't matter about that MELD score.  Drs. will not touch him unless he can

prove he's been sober at least one year.  In this case, I would suggest that he

should be able to also show that he has no interest in drinking ever again. 

Liver or no liver.  Receiving a transplant is a very great gift and should be

treated with much gratitude.  To go right back drinking again would seem like a

sin, as far as I'm concerned.

Luv Gloria

________________________________

 

My husband has a MELD score of 15, this was last evaluated last year.  He has

been drinking and smoking crack cocaine.  He just got out of a residential

rehab and is back out there.  I go to school full time and of course he gets

disability.  Lately he has gone from being so loving to a very mean man. 

(while sober) he goes from being nice to extremely verbally abusive. None of

what he is saying is making sense to me, not that his words dont make sense, but

WHAT he was saying was not nice.  I have decided to leave him, again he

promises to quit drinking telling me that he made a deal with God. I dont know

if it is Hepatic encephalopathy or if it is the alcoholism.  Does anyone have

any experience with this part of the disease???  Thanks, Bonnie

________________________________

To: livercirrhosissupport

Sent: Thursday, September 22, 2011 7:35 AM

Subject: Re: Help

 

awesome post to read first thing in the morning..good job!!!god bless you!!!

>

> I wonder how many there are here, that feel that they don't have much help or

support in the real world??  Oh, I've been there!  Having expectations on

some family members and certainly getting nothing back.  Yup, the list of the

people that I thought were friends and who didn't even call during the treatment

time or the cancer.

>

>

> Well, I think it very well could have been my Higher Power preparing me for

what was to come!!  Many folks in these groups that know my walk, constantly

tell me how I'm an inspiration.  I certainly do not feel that way; but,

sadly, I can tell you, that a few in my husband's family and some friends,either

do not see it in that way or just couldn't be bothered to think about it

anyway.  Yup, it hurt big time!!  Still to this day, I can not wrap my

mind around that type of behavior!!  Thank heavens too, because I wouldn't

want to be me if I was that self-centered. 

>

>

> But, it sure did clean out some of the Pollyanna in me!  I've been so

blessed to be living in this RV park with the west coasts big trees around

me.  It gave me a lot of time to search my soul and ask myself where I was

going and with whom.  I sure didn't want those two-faced people in my life,

friends or family.  However, it gave me an opportunity to peek out of my

circle and see some gals that looked a little lonely and afraid sometimes. 

So, I have some new friendships, I have the old friendships that did last and I

have my family.

> Now that I have been somewhat prepared, mostly I have my grip on my Higher

Power again and that makes me tough.  I don't have to go weeding people out

of my life now and I'm coming up to my biggest battle for my liver yet. 

Chances are extremely high that I'm not going to come out of this alive. 

But, you know, I'm not scared!!!  I feel very safe with my Higher Power in

the drivers seat and the friends that I could keep.  I've cleaned my side of

the street.  I constantly tell those that I love the most - that I love them.

  Even my Dad!!  LOL  That little old guy now expects to get a " I love

you Dad " and a kiss on his head.  I think that the only thing that worries me

a bit, is the pain!!  However, there are a whole lot of folks in this group

that live in that pain, so I'm blessed to be directed here.

>

> Whoops, I actually started this to say to Annie - ask for that help!! 

There are really people out there that will help while the ones we thought

would, won't.  You have no reason to be a martyr about this.  You've had a

rough road and it's OK to ask for help.  I would say definitely, if you

belong to a church, talk with the minister about it.  He/she will definitely

know some folks.  But the bottom line is - be all right with the big Spirit

and I'm sure that your needs will be filled and likely not from where you might

think.

>

> Luv Gloria

>

>

>

>

>

>

> ________________________________

>

>

> thank you so much

>

> Annie

> > To: livercirrhosissupport

>

>

>

>

>

>

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Share on other sites
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Posted
Posted

Thank heavens for you intelligent knowledge of this side affect.  Also, the

advice about the Power of Attorney etc.  I'm going to complete my Power of

Attorney before the end of this week and then insure the lawyer has all of the

papers.  I already have my will and my living will prepared to go to her.  I'm

also telling my son where I'm putting all the important papers here in my RV. 

It will also include the lawyers name and number for my son.  That way, I feel

that I've taken care of everything before I go and he won't have many decisions

to make.

________________________________

 

Hi Bonnie:  I'm Jackie.  My husband had a liver transplant 5/26/10.  If I

were you I would be concerned about him running a fever.  There may be an

infection going on someplace and he needs to get checked out.  My husband and I

will celebrate 34 years of marriage this Saturday, thanks to his liver donor and

family.  has always been very docile, and the drs and nurses all said he

is a dream of a patient.  He is very cooperative.  However, when he

experienced his bouts of hepatic encephalopathy he would be stubborn about

taking his medicine.  (lactulose) He was also very sleepy.  I would wake him

and he would say " ok. in a minute " then 5 minutes would go by and I would wake

him again.  He would tell me I was a pain in the ass.  The first time it

happened I was very hurt and I cried but when it happened again 2 weeks later I

told him that it was my job to be a pain in the ass and I was getting real good

at it.  When he starts getting signs

of hepatic encephalopathy he really needs to go to the e.r and have blood work

done to confirm it.  They need to get that ammonia level back down.  If his

ammonia level continues to rise he could go into a coma.  Don't be afraid to

take him to the e.r and have him checked.  They will know what to do and you

will feel relieved that he is in the hands of the professionals who will treat

him accordingly.  Make sure you have legal and healthcare power of attorney. 

On my husband's second bout of elevated ammonia I called for an ambulance.  The

same two goons showed up as had shown up a week before and asked him a few ?'s

and asked him if he thought he needed to go to the hospital.  He told them he

was fine, and I explained to the one attendant that he was not, in fact, fine. 

If his ammonia level continued to rise he would lapse into a coma and die.  To

my horror the attendant answered " maybe he wants to let nature take it's

course. "   Thank God

they had a policeman with them.  I went and got the lactulose and told them

" watch this " , put it to his lips and he turned his head.  The attendants asked

the policeman for his opinion to which he answered, " I'm a witness.  He refused

his meds.  I'd take him to the hospital. "   After that, as soon as his head was

clear I called a lawyer to draw up the papers and I had power of attorney.  If

telling of my experience can help someone else that's a good thing.  Keep in

touch.  We all care for you here.  Love, Jackie

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Tuesday, September 27, 2011 1:54 PM

Subject: Re: hepatic encephalopathy

 

Gloria, Thank you so  much for your note. I'm glad it was long. I know that my

husband has had a fever of 103.7 for the last two days, and sleeps a lot. 

However, he gets up for a time and then sleeps again.  I am thinking that he

needs to go to the hospital, but am unsure what to say.  He at the very least

should get some labs done, dont you think?  His next appointment for the hep

doc, is in December and that is the earliest.  I appreciate what you said about

the your husband being mean to you.  My husband has always been nice to me up

until now, and we have been together 5 years. Which is why I'm wondering about

the Hep Enc.  I guess one minute he's nice and the next hes irritable and very

grumpy. I wonder if anyone else wondered if their spouse had hep enc, and if it

turned out that they had.  He also has hep c.  The doctors at Lahey clinic in

MA gave him 2 years on this liver...  Thanks again Gloria.

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Tuesday, September 27, 2011 12:44 AM

Subject: Re: hepatic encephalopathy

 

Bonnie

Now I'll try to finish my thoughts!!

Six weeks after my liver surgeryit was still unbelievably horrible in my home. 

So, I brought our travel trailer out here to an RV park, to get away from it for

awhile.  He jumped on that, forced me into a so-called separation agreement and

it just got worse and worse.  At the end of Sept, I forced him to buy me this

39' RV, so that I had a roof over my head.

On Christmas Eve 2010, my husband passed away in the hospital of pneumonia!! 

Not only was his death an absolute shock; but, of course, his kids did not call

to even tell me he was in the hospital.  It was 2 months before I went to move

everything out of our mobile home.  Turned out, he hadn't paid the mortgage for

5 months, so we lost it.  Anyway, I found an Ultra Sound or CT Scan report near

his computer.  Don't know how his kids missed it after their raid, the day

their father died; but, I found it instead.  Turns out, my husband had large

tumours in both lungs.  So the pneumonia was only a complication of the lung

cancer that actually killed him.

When I did some research about lung cancer, I learned that it is the cancer that

affects the brain the fastest of any of the killers.  It has allowed me to find

some forgiveness in my heart for him.  After all, we had been together for 21

yrs.  The absolute very first thing that I did not understand about his

behaviour, was that he was being sooo nasty even though I was waiting for that

very scary operation.  It was like he had no control over what would come out

of his mouth and then would defend himself even though I saw a look of confusion

a few times.  That was not the type of man that he was!!  There just would

never be a time, if he was himself, that I would have ever had to think whether

he would be my strength or not.  It would have been beyond everything that he

stood for as a man, to be anything but my oak tree.  Then there was the time

that he stood looking at me in my office and actually liedto me twice.  I was

flabbergasted!! 

Never, even a hint, would I have believed that it was possible for him to do

that.  He hadn't done it prior to that day, so I sure wasn't prepared for it. 

Therefore, yes, I believe he was suffering badly from the encephalopathy, caused

by lung cancer.  

However, I'm certainly not suggesting that you stay for this kind of abuse.  It

would be that crack cocaine that would scare the socks off my feet.  I simply

would never allow that in or around my home.  I do not feel guilty for leaving

him; because, it was horrible being there.  I gave up a whole lot of material

crap in order to feel safe again; but, none of it was worth my life (or his). 

I feel good now because my niece (surrogate daughter) and her girls (surrogate

grandchildren) have the special furniture etc.  It would have been hers when I

go anyway.  She just got it early - sort of.

One other thing that I do know about alcoholism.  The more you threaten to

leave and don't, the more he thinks he's getting away with such terrible

behaviour.  I do know that if it was just alcoholism, he would be feeling like

such a low life for what he has been doing, although he likely wouldn't own the

behaviour.  But, I don't know about that crack.  Finally, if he's out there

drinking his liver to death, there is not much you can do about it.  Maybe it

sounds awful; but, honestly, he appears to have made his choice.  I had not had

a drink in 15 yrs when I learned about my infection.  Shortly after that, I

realized that " to drink is to die " .

I'm sorry that I have been so long in this post; but, I would just like you to

understand that you do not have to stay when he chooses to drink and drug. 

Doesn't matter about that MELD score.  Drs. will not touch him unless he can

prove he's been sober at least one year.  In this case, I would suggest that he

should be able to also show that he has no interest in drinking ever again. 

Liver or no liver.  Receiving a transplant is a very great gift and should be

treated with much gratitude.  To go right back drinking again would seem like a

sin, as far as I'm concerned.

Luv Gloria

________________________________

 

My husband has a MELD score of 15, this was last evaluated last year.  He has

been drinking and smoking crack cocaine.  He just got out of a residential

rehab and is back out there.  I go to school full time and of course he gets

disability.  Lately he has gone from being so loving to a very mean man. 

(while sober) he goes from being nice to extremely verbally abusive. None of

what he is saying is making sense to me, not that his words dont make sense, but

WHAT he was saying was not nice.  I have decided to leave him, again he

promises to quit drinking telling me that he made a deal with God. I dont know

if it is Hepatic encephalopathy or if it is the alcoholism.  Does anyone have

any experience with this part of the disease???  Thanks, Bonnie

________________________________

To: livercirrhosissupport

Sent: Thursday, September 22, 2011 7:35 AM

Subject: Re: Help

 

awesome post to read first thing in the morning..good job!!!god bless you!!!

>

> I wonder how many there are here, that feel that they don't have much help or

support in the real world??  Oh, I've been there!  Having expectations on

some family members and certainly getting nothing back.  Yup, the list of the

people that I thought were friends and who didn't even call during the treatment

time or the cancer.

>

>

> Well, I think it very well could have been my Higher Power preparing me for

what was to come!!  Many folks in these groups that know my walk, constantly

tell me how I'm an inspiration.  I certainly do not feel that way; but,

sadly, I can tell you, that a few in my husband's family and some friends,either

do not see it in that way or just couldn't be bothered to think about it

anyway.  Yup, it hurt big time!!  Still to this day, I can not wrap my

mind around that type of behavior!!  Thank heavens too, because I wouldn't

want to be me if I was that self-centered. 

>

>

> But, it sure did clean out some of the Pollyanna in me!  I've been so

blessed to be living in this RV park with the west coasts big trees around

me.  It gave me a lot of time to search my soul and ask myself where I was

going and with whom.  I sure didn't want those two-faced people in my life,

friends or family.  However, it gave me an opportunity to peek out of my

circle and see some gals that looked a little lonely and afraid sometimes. 

So, I have some new friendships, I have the old friendships that did last and I

have my family.

> Now that I have been somewhat prepared, mostly I have my grip on my Higher

Power again and that makes me tough.  I don't have to go weeding people out

of my life now and I'm coming up to my biggest battle for my liver yet. 

Chances are extremely high that I'm not going to come out of this alive. 

But, you know, I'm not scared!!!  I feel very safe with my Higher Power in

the drivers seat and the friends that I could keep.  I've cleaned my side of

the street.  I constantly tell those that I love the most - that I love them.

  Even my Dad!!  LOL  That little old guy now expects to get a " I love

you Dad " and a kiss on his head.  I think that the only thing that worries me

a bit, is the pain!!  However, there are a whole lot of folks in this group

that live in that pain, so I'm blessed to be directed here.

>

> Whoops, I actually started this to say to Annie - ask for that help!! 

There are really people out there that will help while the ones we thought

would, won't.  You have no reason to be a martyr about this.  You've had a

rough road and it's OK to ask for help.  I would say definitely, if you

belong to a church, talk with the minister about it.  He/she will definitely

know some folks.  But the bottom line is - be all right with the big Spirit

and I'm sure that your needs will be filled and likely not from where you might

think.

>

> Luv Gloria

>

>

>

>

>

>

> ________________________________

>

>

> thank you so much

>

> Annie

> > To: livercirrhosissupport

>

>

>

>

>

>

Link to comment
Share on other sites
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Posted
Posted

Gloria, since we last talked about my husband and his Hep E.  He was running

the fever of 103.7 and on Wednesday he drove himself to the hospital early in

the morning as he was having difficulty breathing. Turns out he has pneumonia,

which has turned to sepsis.  He is on a ventolator, his kidneys have shut down,

the blood pressure is so low that it cannot get to his organs to help them work,

he is swelling like a balloon, his legs are turning purple because his liver

isnt  working correctly.  The thing is people, I researched this disease,

looked to this group for answers, and to anyone looking for absolutes, like what

will happen if the end is close.....  doesnt always happen that way.  He was

talking to me and then they brought him to ICU and said he needs a mechanical

vent as his pulse is 191.  We had 20 seconds to say goodbye and now he is in

the medically induced coma, there truly isnt much hope.  I love him soo much. 

The guilt I feel is

incredible....I was still mad at him for drinkin and druggin and didnt think it

was life threatning, so i said, serves you right..keep doing things to your

body.  I do want to say if someone is having issues, get them checked out. 

Really all the doctors are doing are keeping him on life support until it is not

prudent and it looks like that time is very close. 

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Wednesday, September 28, 2011 12:17 AM

Subject: Re: hepatic encephalopathy

 

Bonnie

I feel very sad for you!!  It's a lousy thing to live with, even if we do

understand.  Yup, I never knew from one minute to the next what he would be

like.  At least you have some understanding of the disease now.

I'm also sad because it appears that your husband has chosen death over a battle

with the dragon!  But, perhaps it is the only way he can cope, with the Hep C

having done so much damage and the enceph causing so much confusion.  I agree

with Bobby!  We have to wonder how many people have had the brain disorder long

before the true reason has come to light.

I have to warn my son about this since he will be my main caregiver when I get

sick.  Fortunately, he is also an ardent researcher.  He won't just sit back,

not understanding.  The same thing with my mother.  However, it was

particularly hard to tell her about the return of the cancer; because, she also

knows more about it than the average momma bear.

________________________________

 

Gloria, Thank you so  much for your note. I'm glad it was long. I know that my

husband has had a fever of 103.7 for the last two days, and sleeps a lot. 

However, he gets up for a time and then sleeps again.  I am thinking that he

needs to go to the hospital, but am unsure what to say.  He at the very least

should get some labs done, dont you think?  His next appointment for the hep

doc, is in December and that is the earliest.  I appreciate what you said about

the your husband being mean to you.  My husband has always been nice to me up

until now, and we have been together 5 years. Which is why I'm wondering about

the Hep Enc.  I guess one minute he's nice and the next hes irritable and very

grumpy. I wonder if anyone else wondered if their spouse had hep enc, and if it

turned out that they had.  He also has hep c.  The doctors at Lahey clinic in

MA gave him 2 years on this liver...  Thanks again Gloria.

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Tuesday, September 27, 2011 12:44 AM

Subject: Re: hepatic encephalopathy

 

Bonnie

Now I'll try to finish my thoughts!!

Six weeks after my liver surgeryit was still unbelievably horrible in my home. 

So, I brought our travel trailer out here to an RV park, to get away from it for

awhile.  He jumped on that, forced me into a so-called separation agreement and

it just got worse and worse.  At the end of Sept, I forced him to buy me this

39' RV, so that I had a roof over my head.

On Christmas Eve 2010, my husband passed away in the hospital of pneumonia!! 

Not only was his death an absolute shock; but, of course, his kids did not call

to even tell me he was in the hospital.  It was 2 months before I went to move

everything out of our mobile home.  Turned out, he hadn't paid the mortgage for

5 months, so we lost it.  Anyway, I found an Ultra Sound or CT Scan report near

his computer.  Don't know how his kids missed it after their raid, the day

their father died; but, I found it instead.  Turns out, my husband had large

tumours in both lungs.  So the pneumonia was only a complication of the lung

cancer that actually killed him.

When I did some research about lung cancer, I learned that it is the cancer that

affects the brain the fastest of any of the killers.  It has allowed me to find

some forgiveness in my heart for him.  After all, we had been together for 21

yrs.  The absolute very first thing that I did not understand about his

behaviour, was that he was being sooo nasty even though I was waiting for that

very scary operation.  It was like he had no control over what would come out

of his mouth and then would defend himself even though I saw a look of confusion

a few times.  That was not the type of man that he was!!  There just would

never be a time, if he was himself, that I would have ever had to think whether

he would be my strength or not.  It would have been beyond everything that he

stood for as a man, to be anything but my oak tree.  Then there was the time

that he stood looking at me in my office and actually liedto me twice.  I was

flabbergasted!! 

Never, even a hint, would I have believed that it was possible for him to do

that.  He hadn't done it prior to that day, so I sure wasn't prepared for it. 

Therefore, yes, I believe he was suffering badly from the encephalopathy, caused

by lung cancer.  

However, I'm certainly not suggesting that you stay for this kind of abuse.  It

would be that crack cocaine that would scare the socks off my feet.  I simply

would never allow that in or around my home.  I do not feel guilty for leaving

him; because, it was horrible being there.  I gave up a whole lot of material

crap in order to feel safe again; but, none of it was worth my life (or his). 

I feel good now because my niece (surrogate daughter) and her girls (surrogate

grandchildren) have the special furniture etc.  It would have been hers when I

go anyway.  She just got it early - sort of.

One other thing that I do know about alcoholism.  The more you threaten to

leave and don't, the more he thinks he's getting away with such terrible

behaviour.  I do know that if it was just alcoholism, he would be feeling like

such a low life for what he has been doing, although he likely wouldn't own the

behaviour.  But, I don't know about that crack.  Finally, if he's out there

drinking his liver to death, there is not much you can do about it.  Maybe it

sounds awful; but, honestly, he appears to have made his choice.  I had not had

a drink in 15 yrs when I learned about my infection.  Shortly after that, I

realized that " to drink is to die " .

I'm sorry that I have been so long in this post; but, I would just like you to

understand that you do not have to stay when he chooses to drink and drug. 

Doesn't matter about that MELD score.  Drs. will not touch him unless he can

prove he's been sober at least one year.  In this case, I would suggest that he

should be able to also show that he has no interest in drinking ever again. 

Liver or no liver.  Receiving a transplant is a very great gift and should be

treated with much gratitude.  To go right back drinking again would seem like a

sin, as far as I'm concerned.

Luv Gloria

________________________________

 

My husband has a MELD score of 15, this was last evaluated last year.  He has

been drinking and smoking crack cocaine.  He just got out of a residential

rehab and is back out there.  I go to school full time and of course he gets

disability.  Lately he has gone from being so loving to a very mean man. 

(while sober) he goes from being nice to extremely verbally abusive. None of

what he is saying is making sense to me, not that his words dont make sense, but

WHAT he was saying was not nice.  I have decided to leave him, again he

promises to quit drinking telling me that he made a deal with God. I dont know

if it is Hepatic encephalopathy or if it is the alcoholism.  Does anyone have

any experience with this part of the disease???  Thanks, Bonnie

________________________________

To: livercirrhosissupport

Sent: Thursday, September 22, 2011 7:35 AM

Subject: Re: Help

 

awesome post to read first thing in the morning..good job!!!god bless you!!!

>

> I wonder how many there are here, that feel that they don't have much help or

support in the real world??  Oh, I've been there!  Having expectations on

some family members and certainly getting nothing back.  Yup, the list of the

people that I thought were friends and who didn't even call during the treatment

time or the cancer.

>

>

> Well, I think it very well could have been my Higher Power preparing me for

what was to come!!  Many folks in these groups that know my walk, constantly

tell me how I'm an inspiration.  I certainly do not feel that way; but,

sadly, I can tell you, that a few in my husband's family and some friends,either

do not see it in that way or just couldn't be bothered to think about it

anyway.  Yup, it hurt big time!!  Still to this day, I can not wrap my

mind around that type of behavior!!  Thank heavens too, because I wouldn't

want to be me if I was that self-centered. 

>

>

> But, it sure did clean out some of the Pollyanna in me!  I've been so

blessed to be living in this RV park with the west coasts big trees around

me.  It gave me a lot of time to search my soul and ask myself where I was

going and with whom.  I sure didn't want those two-faced people in my life,

friends or family.  However, it gave me an opportunity to peek out of my

circle and see some gals that looked a little lonely and afraid sometimes. 

So, I have some new friendships, I have the old friendships that did last and I

have my family.

> Now that I have been somewhat prepared, mostly I have my grip on my Higher

Power again and that makes me tough.  I don't have to go weeding people out

of my life now and I'm coming up to my biggest battle for my liver yet. 

Chances are extremely high that I'm not going to come out of this alive. 

But, you know, I'm not scared!!!  I feel very safe with my Higher Power in

the drivers seat and the friends that I could keep.  I've cleaned my side of

the street.  I constantly tell those that I love the most - that I love them.

  Even my Dad!!  LOL  That little old guy now expects to get a " I love

you Dad " and a kiss on his head.  I think that the only thing that worries me

a bit, is the pain!!  However, there are a whole lot of folks in this group

that live in that pain, so I'm blessed to be directed here.

>

> Whoops, I actually started this to say to Annie - ask for that help!! 

There are really people out there that will help while the ones we thought

would, won't.  You have no reason to be a martyr about this.  You've had a

rough road and it's OK to ask for help.  I would say definitely, if you

belong to a church, talk with the minister about it.  He/she will definitely

know some folks.  But the bottom line is - be all right with the big Spirit

and I'm sure that your needs will be filled and likely not from where you might

think.

>

> Luv Gloria

>

>

>

>

>

>

> ________________________________

>

>

> thank you so much

>

> Annie

> > To: livercirrhosissupport

>

>

>

>

>

>

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Posted
Posted

Don't feel guilty! I mean, I can understand why you would because we women tend

to blame ourselves for everything. But realistically, it is your husband who

hurt himself and he's also hurt YOU. You and everyone who loves him. Sad,

but true.

> >

> > I wonder how many there are here, that feel that they don't have much help

or support in the real world??  Oh, I've been there!  Having expectations

on some family members and certainly getting nothing back.  Yup, the list of

the people that I thought were friends and who didn't even call during the

treatment time or the cancer.

> >

> >

> > Well, I think it very well could have been my Higher Power preparing me for

what was to come!!  Many folks in these groups that know my walk, constantly

tell me how I'm an inspiration.  I certainly do not feel that way; but,

sadly, I can tell you, that a few in my husband's family and some friends,either

do not see it in that way or just couldn't be bothered to think about it

anyway.  Yup, it hurt big time!!  Still to this day, I can not wrap my

mind around that type of behavior!!  Thank heavens too, because I wouldn't

want to be me if I was that self-centered. 

> >

> >

> > But, it sure did clean out some of the Pollyanna in me!  I've been so

blessed to be living in this RV park with the west coasts big trees around

me.  It gave me a lot of time to search my soul and ask myself where I was

going and with whom.  I sure didn't want those two-faced people in my life,

friends or family.  However, it gave me an opportunity to peek out of my

circle and see some gals that looked a little lonely and afraid sometimes. 

So, I have some new friendships, I have the old friendships that did last and I

have my family.

> > Now that I have been somewhat prepared, mostly I have my grip on my Higher

Power again and that makes me tough.  I don't have to go weeding people out

of my life now and I'm coming up to my biggest battle for my liver yet. 

Chances are extremely high that I'm not going to come out of this alive. 

But, you know, I'm not scared!!!  I feel very safe with my Higher Power in

the drivers seat and the friends that I could keep.  I've cleaned my side of

the street.  I constantly tell those that I love the most - that I love them.

  Even my Dad!!  LOL  That little old guy now expects to get a " I love

you Dad " and a kiss on his head.  I think that the only thing that worries me

a bit, is the pain!!  However, there are a whole lot of folks in this group

that live in that pain, so I'm blessed to be directed here.

> >

> > Whoops, I actually started this to say to Annie - ask for that help!! 

There are really people out there that will help while the ones we thought

would, won't.  You have no reason to be a martyr about this.  You've had a

rough road and it's OK to ask for help.  I would say definitely, if you

belong to a church, talk with the minister about it.  He/she will definitely

know some folks.  But the bottom line is - be all right with the big Spirit

and I'm sure that your needs will be filled and likely not from where you might

think.

> >

> > Luv Gloria

> >

> >

> >

> >

> >

> >

> > ________________________________

> >

> >

> > thank you so much

> >

> > Annie

> > > To: livercirrhosissupport

> >

> >

> >

> >

> >

> >

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Posted
Posted

Sorry to hear this Bonnie. I pray the Lord brings you peace and is

with you husband during this time.

Roni

> Gloria, since we last talked about my husband and his Hep E. He was

> running the fever of 103.7 and on Wednesday he drove himself to the

> hospital early in the morning as he was having difficulty breathing.

> Turns out he has pneumonia, which has turned to sepsis. He is on a

> ventolator, his kidneys have shut down, the blood pressure is so low

> that it cannot get to his organs to help them work, he is swelling

> like a balloon, his legs are turning purple because his liver isnt

> working correctly. The thing is people, I researched this disease,

> looked to this group for answers, and to anyone looking for

> absolutes, like what will happen if the end is close..... doesnt

> always happen that way. He was talking to me and then they brought

> him to ICU and said he needs a mechanical vent as his pulse is 191.

> We had 20 seconds to say goodbye and now he is in the medically

> induced coma, there truly isnt much hope. I love him soo much. The

> guilt I feel is

> incredible....I was still mad at him for drinkin and druggin and

> didnt think it was life threatning, so i said, serves you

> right..keep doing things to your body. I do want to say if someone

> is having issues, get them checked out. Really all the doctors are

> doing are keeping him on life support until it is not prudent and it

> looks like that time is very close.

>

> ________________________________

>

> To: " livercirrhosissupport "

<livercirrhosissupport

> >

> Sent: Wednesday, September 28, 2011 12:17 AM

> Subject: Re: hepatic encephalopathy

>

>

> Bonnie

>

> I feel very sad for you!! It's a lousy thing to live with, even if

> we do understand. Yup, I never knew from one minute to the next

> what he would be like. At least you have some understanding of the

> disease now.

>

> I'm also sad because it appears that your husband has chosen death

> over a battle with the dragon! But, perhaps it is the only way he

> can cope, with the Hep C having done so much damage and the enceph

> causing so much confusion. I agree with Bobby! We have to wonder

> how many people have had the brain disorder long before the true

> reason has come to light.

>

> I have to warn my son about this since he will be my main caregiver

> when I get sick. Fortunately, he is also an ardent researcher. He

> won't just sit back, not understanding. The same thing with my

> mother. However, it was particularly hard to tell her about the

> return of the cancer; because, she also knows more about it than the

> average momma bear.

>

> ________________________________

>

>

> Gloria, Thank you so much for your note. I'm glad it was long. I

> know that my husband has had a fever of 103.7 for the last two days,

> and sleeps a lot. However, he gets up for a time and then sleeps

> again. I am thinking that he needs to go to the hospital, but am

> unsure what to say. He at the very least should get some labs done,

> dont you think? His next appointment for the hep doc, is in

> December and that is the earliest. I appreciate what you said about

> the your husband being mean to you. My husband has always been nice

> to me up until now, and we have been together 5 years. Which is why

> I'm wondering about the Hep Enc. I guess one minute he's nice and

> the next hes irritable and very grumpy. I wonder if anyone else

> wondered if their spouse had hep enc, and if it turned out that they

> had. He also has hep c. The doctors at Lahey clinic in MA gave him

> 2 years on this liver... Thanks again Gloria.

>

> ________________________________

>

> To: " livercirrhosissupport "

<livercirrhosissupport

> >

> Sent: Tuesday, September 27, 2011 12:44 AM

> Subject: Re: hepatic encephalopathy

>

>

> Bonnie

>

> Now I'll try to finish my thoughts!!

>

> Six weeks after my liver surgeryit was still unbelievably horrible

> in my home. So, I brought our travel trailer out here to an RV

> park, to get away from it for awhile. He jumped on that, forced me

> into a so-called separation agreement and it just got worse and

> worse. At the end of Sept, I forced him to buy me this 39' RV, so

> that I had a roof over my head.

>

> On Christmas Eve 2010, my husband passed away in the hospital of

> pneumonia!! Not only was his death an absolute shock; but, of

> course, his kids did not call to even tell me he was in the

> hospital. It was 2 months before I went to move everything out of

> our mobile home. Turned out, he hadn't paid the mortgage for 5

> months, so we lost it. Anyway, I found an Ultra Sound or CT Scan

> report near his computer. Don't know how his kids missed it after

> their raid, the day their father died; but, I found it instead.

> Turns out, my husband had large tumours in both lungs. So the

> pneumonia was only a complication of the lung cancer that actually

> killed him.

>

> When I did some research about lung cancer, I learned that it is the

> cancer that affects the brain the fastest of any of the killers. It

> has allowed me to find some forgiveness in my heart for him. After

> all, we had been together for 21 yrs. The absolute very first thing

> that I did not understand about his behaviour, was that he was being

> sooo nasty even though I was waiting for that very scary operation.

> It was like he had no control over what would come out of his mouth

> and then would defend himself even though I saw a look of confusion

> a few times. That was not the type of man that he was!! There just

> would never be a time, if he was himself, that I would have ever had

> to think whether he would be my strength or not. It would have been

> beyond everything that he stood for as a man, to be anything but my

> oak tree. Then there was the time that he stood looking at me in my

> office and actually liedto me twice. I was flabbergasted!!

> Never, even a hint, would I have believed that it was possible for

> him to do that. He hadn't done it prior to that day, so I sure

> wasn't prepared for it. Therefore, yes, I believe he was suffering

> badly from the encephalopathy, caused by lung cancer.

>

> However, I'm certainly not suggesting that you stay for this kind of

> abuse. It would be that crack cocaine that would scare the socks

> off my feet. I simply would never allow that in or around my home.

> I do not feel guilty for leaving him; because, it was horrible being

> there. I gave up a whole lot of material crap in order to feel safe

> again; but, none of it was worth my life (or his). I feel good now

> because my niece (surrogate daughter) and her girls (surrogate

> grandchildren) have the special furniture etc. It would have been

> hers when I go anyway. She just got it early - sort of.

>

> One other thing that I do know about alcoholism. The more you

> threaten to leave and don't, the more he thinks he's getting away

> with such terrible behaviour. I do know that if it was just

> alcoholism, he would be feeling like such a low life for what he has

> been doing, although he likely wouldn't own the behaviour. But, I

> don't know about that crack. Finally, if he's out there drinking

> his liver to death, there is not much you can do about it. Maybe it

> sounds awful; but, honestly, he appears to have made his choice. I

> had not had a drink in 15 yrs when I learned about my infection.

> Shortly after that, I realized that " to drink is to die " .

>

> I'm sorry that I have been so long in this post; but, I would just

> like you to understand that you do not have to stay when he chooses

> to drink and drug. Doesn't matter about that MELD score. Drs. will

> not touch him unless he can prove he's been sober at least one

> year. In this case, I would suggest that he should be able to also

> show that he has no interest in drinking ever again. Liver or no

> liver. Receiving a transplant is a very great gift and should be

> treated with much gratitude. To go right back drinking again would

> seem like a sin, as far as I'm concerned.

>

> Luv Gloria

>

> ________________________________

>

>

> My husband has a MELD score of 15, this was last evaluated last

> year. He has been drinking and smoking crack cocaine. He just got

> out of a residential rehab and is back out there. I go to school

> full time and of course he gets disability. Lately he has gone from

> being so loving to a very mean man. (while sober) he goes from

> being nice to extremely verbally abusive. None of what he is saying

> is making sense to me, not that his words dont make sense, but WHAT

> he was saying was not nice. I have decided to leave him, again he

> promises to quit drinking telling me that he made a deal with God. I

> dont know if it is Hepatic encephalopathy or if it is the

> alcoholism. Does anyone have any experience with this part of the

> disease??? Thanks, Bonnie

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Thursday, September 22, 2011 7:35 AM

> Subject: Re: Help

>

>

> awesome post to read first thing in the morning..good job!!!god

> bless you!!!

>

>

> >

> > I wonder how many there are here, that feel that they don't have

> much help or support in the real world?? Oh, I've been there!Â

> Having expectations on some family members and certainly getting

> nothing back. Yup, the list of the people that I thought were

> friends and who didn't even call during the treatment time or the

> cancer.

> >

> >

> > Well, I think it very well could have been my Higher Power

> preparing me for what was to come!! Many folks in these groups

> that know my walk, constantly tell me how I'm an inspiration. I

> certainly do not feel that way; but, sadly, I can tell you, that a

> few in my husband's family and some friends,either do not see it in

> that way or just couldn't be bothered to think about it anyway.Â

> Yup, it hurt big time!! Still to this day, I can not wrap my mind

> around that type of behavior!! Thank heavens too, because I

> wouldn't want to be me if I was that self-centered.Â

> >

> >

> > But, it sure did clean out some of the Pollyanna in me! I've

> been so blessed to be living in this RV park with the west coasts

> big trees around me. It gave me a lot of time to search my soul

> and ask myself where I was going and with whom. I sure didn't want

> those two-faced people in my life, friends or family. However, it

> gave me an opportunity to peek out of my circle and see some gals

> that looked a little lonely and afraid sometimes. So, I have some

> new friendships, I have the old friendships that did last and I have

> my family.

> > Now that I have been somewhat prepared, mostly I have my grip on

> my Higher Power again and that makes me tough. I don't have to go

> weeding people out of my life now and I'm coming up to my biggest

> battle for my liver yet. Chances are extremely high that I'm not

> going to come out of this alive. But, you know, I'm not scared!!!

> Â I feel very safe with my Higher Power in the drivers seat and the

> friends that I could keep. I've cleaned my side of the street. I

> constantly tell those that I love the most - that I love them. Â

> Even my Dad!! LOL That little old guy now expects to get a " I

> love you Dad " and a kiss on his head. I think that the only thing

> that worries me a bit, is the pain!! However, there are a whole

> lot of folks in this group that live in that pain, so I'm blessed to

> be directed here.

> >

> > Whoops, I actually started this to say to Annie - ask for that

> help!! There are really people out there that will help while the

> ones we thought would, won't. You have no reason to be a martyr

> about this. You've had a rough road and it's OK to ask for help.Â

> I would say definitely, if you belong to a church, talk with the

> minister about it. He/she will definitely know some folks. But

> the bottom line is - be all right with the big Spirit and I'm sure

> that your needs will be filled and likely not from where you might

> think.

> >

> > Luv Gloria

> >

> >

> >

> >

> >

> >

> > ________________________________

> >

> >

> > thank you so much

> >

> > Annie

> > > To: livercirrhosissupport

> >

> >

> >

> >

> >

> >

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Posted
Posted

I agree Gloria, to continue drinking after getting a new liver would be a sin as

there are too few to go around as it is!!!

> >

> > I wonder how many there are here, that feel that they don't have much help

or support in the real world??  Oh, I've been there!  Having expectations

on some family members and certainly getting nothing back.  Yup, the list of

the people that I thought were friends and who didn't even call during the

treatment time or the cancer.

> >

> >

> > Well, I think it very well could have been my Higher Power preparing me for

what was to come!!  Many folks in these groups that know my walk, constantly

tell me how I'm an inspiration.  I certainly do not feel that way; but,

sadly, I can tell you, that a few in my husband's family and some friends,either

do not see it in that way or just couldn't be bothered to think about it

anyway.  Yup, it hurt big time!!  Still to this day, I can not wrap my

mind around that type of behavior!!  Thank heavens too, because I wouldn't

want to be me if I was that self-centered. 

> >

> >

> > But, it sure did clean out some of the Pollyanna in me!  I've been so

blessed to be living in this RV park with the west coasts big trees around

me.  It gave me a lot of time to search my soul and ask myself where I was

going and with whom.  I sure didn't want those two-faced people in my life,

friends or family.  However, it gave me an opportunity to peek out of my

circle and see some gals that looked a little lonely and afraid sometimes. 

So, I have some new friendships, I have the old friendships that did last and I

have my family.

> > Now that I have been somewhat prepared, mostly I have my grip on my Higher

Power again and that makes me tough.  I don't have to go weeding people out

of my life now and I'm coming up to my biggest battle for my liver yet. 

Chances are extremely high that I'm not going to come out of this alive. 

But, you know, I'm not scared!!!  I feel very safe with my Higher Power in

the drivers seat and the friends that I could keep.  I've cleaned my side of

the street.  I constantly tell those that I love the most - that I love them.

  Even my Dad!!  LOL  That little old guy now expects to get a " I love

you Dad " and a kiss on his head.  I think that the only thing that worries me

a bit, is the pain!!  However, there are a whole lot of folks in this group

that live in that pain, so I'm blessed to be directed here.

> >

> > Whoops, I actually started this to say to Annie - ask for that help!! 

There are really people out there that will help while the ones we thought

would, won't.  You have no reason to be a martyr about this.  You've had a

rough road and it's OK to ask for help.  I would say definitely, if you

belong to a church, talk with the minister about it.  He/she will definitely

know some folks.  But the bottom line is - be all right with the big Spirit

and I'm sure that your needs will be filled and likely not from where you might

think.

> >

> > Luv Gloria

> >

> >

> >

> >

> >

> >

> > ________________________________

> >

> >

> > thank you so much

> >

> > Annie

> > > To: livercirrhosissupport

> >

> >

> >

> >

> >

> >

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Posted
Posted

Bonnie - I can certainly understand your feelings. I think they are

fairly common. However, to keep on holding on to the guilt is not

going to do you any good. I am telling you this while i am going

through something similar but on a much lower level than you and your

husband. I am leaving a man who has helped to support me because I

can't live with his value system, wouldn't be able to have home

dialysis here when/if I need it, and a thousand other little reasons.

his health is not good, and I expect to still be involved with seeing

he gets the best care he will allow (stubborn, won't go to the doctor

or doesn't tell them all the problems) he is not an alcoholic, but is

an addict of something I won't specify. I have worked myself up so

much about this and other things since my mother's death in May that I

am having stomach problems with cramping, alternating between diarrhea

and constipation. Also, i am sure the stress is not helping my heart

and the rest of my body either. I am hoping that when i finally tell

him early next week that I am leaving - have the place all ready to

move into - that the stress level will go down. I hope you can

forgive him and yourself and cut down on the stress you are feeling.

I truly believe we have limits to what we can live with, I know for me

they were passed years ago, but I couldn't afford to move until

recently, so I tried to make the best of it. Guess that is what I am

still trying to do. You did what you had to do. You couldn't control

what he did. Be easy on yourself. And the people who truly care

about you will be too. They won't blame you. jan

> Gloria, since we last talked about my husband and his Hep E. He was running

> the fever of 103.7 and on Wednesday he drove himself to the hospital early

> in the morning as he was having difficulty breathing. Turns out he has

> pneumonia, which has turned to sepsis. He is on a ventolator, his kidneys

> have shut down, the blood pressure is so low that it cannot get to his

> organs to help them work, he is swelling like a balloon, his legs are

> turning purple because his liver isnt working correctly. The thing is

> people, I researched this disease, looked to this group for answers, and to

> anyone looking for absolutes, like what will happen if the end is

> close..... doesnt always happen that way. He was talking to me and then

> they brought him to ICU and said he needs a mechanical vent as his pulse is

> 191. We had 20 seconds to say goodbye and now he is in the medically

> induced coma, there truly isnt much hope. I love him soo much. The guilt I

> feel is

> incredible....I was still mad at him for drinkin and druggin and didnt

> think it was life threatning, so i said, serves you right..keep doing things

> to your body. I do want to say if someone is having issues, get them

> checked out. Really all the doctors are doing are keeping him on life

> support until it is not prudent and it looks like that time is very close.

>

>

>

> ________________________________

>

> To: " livercirrhosissupport "

> <livercirrhosissupport >

> Sent: Wednesday, September 28, 2011 12:17 AM

> Subject: Re: hepatic encephalopathy

>

>

>

> Bonnie

>

> I feel very sad for you!! It's a lousy thing to live with, even if we do

> understand. Yup, I never knew from one minute to the next what he would be

> like. At least you have some understanding of the disease now.

>

> I'm also sad because it appears that your husband has chosen death over a

> battle with the dragon! But, perhaps it is the only way he can cope, with

> the Hep C having done so much damage and the enceph causing so much

> confusion. I agree with Bobby! We have to wonder how many people have had

> the brain disorder long before the true reason has come to light.

>

> I have to warn my son about this since he will be my main caregiver when I

> get sick. Fortunately, he is also an ardent researcher. He won't just sit

> back, not understanding. The same thing with my mother. However, it was

> particularly hard to tell her about the return of the cancer; because, she

> also knows more about it than the average momma bear.

>

> ________________________________

>

>

> Gloria, Thank you so much for your note. I'm glad it was long. I know that

> my husband has had a fever of 103.7 for the last two days, and sleeps a

> lot. However, he gets up for a time and then sleeps again. I am thinking

> that he needs to go to the hospital, but am unsure what to say. He at the

> very least should get some labs done, dont you think? His next appointment

> for the hep doc, is in December and that is the earliest. I appreciate what

> you said about the your husband being mean to you. My husband has always

> been nice to me up until now, and we have been together 5 years. Which is

> why I'm wondering about the Hep Enc. I guess one minute he's nice and the

> next hes irritable and very grumpy. I wonder if anyone else wondered if

> their spouse had hep enc, and if it turned out that they had. He also has

> hep c. The doctors at Lahey clinic in MA gave him 2 years on this liver...

> Thanks again Gloria.

>

> ________________________________

>

> To: " livercirrhosissupport "

> <livercirrhosissupport >

> Sent: Tuesday, September 27, 2011 12:44 AM

> Subject: Re: hepatic encephalopathy

>

>

> Bonnie

>

> Now I'll try to finish my thoughts!!

>

> Six weeks after my liver surgeryit was still unbelievably horrible in my

> home. So, I brought our travel trailer out here to an RV park, to get away

> from it for awhile. He jumped on that, forced me into a so-called

> separation agreement and it just got worse and worse. At the end of Sept, I

> forced him to buy me this 39' RV, so that I had a roof over my head.

>

> On Christmas Eve 2010, my husband passed away in the hospital of

> pneumonia!! Not only was his death an absolute shock; but, of course, his

> kids did not call to even tell me he was in the hospital. It was 2 months

> before I went to move everything out of our mobile home. Turned out, he

> hadn't paid the mortgage for 5 months, so we lost it. Anyway, I found an

> Ultra Sound or CT Scan report near his computer. Don't know how his kids

> missed it after their raid, the day their father died; but, I found it

> instead. Turns out, my husband had large tumours in both lungs. So the

> pneumonia was only a complication of the lung cancer that actually killed

> him.

>

> When I did some research about lung cancer, I learned that it is the cancer

> that affects the brain the fastest of any of the killers. It has allowed me

> to find some forgiveness in my heart for him. After all, we had been

> together for 21 yrs. The absolute very first thing that I did not

> understand about his behaviour, was that he was being sooo nasty even though

> I was waiting for that very scary operation. It was like he had no control

> over what would come out of his mouth and then would defend himself even

> though I saw a look of confusion a few times. That was not the type of man

> that he was!! There just would never be a time, if he was himself, that I

> would have ever had to think whether he would be my strength or not. It

> would have been beyond everything that he stood for as a man, to be anything

> but my oak tree. Then there was the time that he stood looking at me in my

> office and actually liedto me twice. I was flabbergasted!!

> Never, even a hint, would I have believed that it was possible for him to do

> that. He hadn't done it prior to that day, so I sure wasn't prepared for

> it. Therefore, yes, I believe he was suffering badly from the

> encephalopathy, caused by lung cancer.

>

> However, I'm certainly not suggesting that you stay for this kind of abuse.

> It would be that crack cocaine that would scare the socks off my feet. I

> simply would never allow that in or around my home. I do not feel guilty

> for leaving him; because, it was horrible being there. I gave up a whole

> lot of material crap in order to feel safe again; but, none of it was worth

> my life (or his). I feel good now because my niece (surrogate daughter) and

> her girls (surrogate grandchildren) have the special furniture etc. It

> would have been hers when I go anyway. She just got it early - sort of.

>

> One other thing that I do know about alcoholism. The more you threaten to

> leave and don't, the more he thinks he's getting away with such terrible

> behaviour. I do know that if it was just alcoholism, he would be feeling

> like such a low life for what he has been doing, although he likely wouldn't

> own the behaviour. But, I don't know about that crack. Finally, if he's

> out there drinking his liver to death, there is not much you can do about

> it. Maybe it sounds awful; but, honestly, he appears to have made his

> choice. I had not had a drink in 15 yrs when I learned about my infection.

> Shortly after that, I realized that " to drink is to die " .

>

> I'm sorry that I have been so long in this post; but, I would just like you

> to understand that you do not have to stay when he chooses to drink and

> drug. Doesn't matter about that MELD score. Drs. will not touch him unless

> he can prove he's been sober at least one year. In this case, I would

> suggest that he should be able to also show that he has no interest in

> drinking ever again. Liver or no liver. Receiving a transplant is a very

> great gift and should be treated with much gratitude. To go right back

> drinking again would seem like a sin, as far as I'm concerned.

>

> Luv Gloria

>

> ________________________________

>

>

> My husband has a MELD score of 15, this was last evaluated last year. He

> has been drinking and smoking crack cocaine. He just got out of a

> residential rehab and is back out there. I go to school full time and of

> course he gets disability. Lately he has gone from being so loving to a

> very mean man. (while sober) he goes from being nice to extremely verbally

> abusive. None of what he is saying is making sense to me, not that his words

> dont make sense, but WHAT he was saying was not nice. I have decided to

> leave him, again he promises to quit drinking telling me that he made a deal

> with God. I dont know if it is Hepatic encephalopathy or if it is the

> alcoholism. Does anyone have any experience with this part of the

> disease??? Thanks, Bonnie

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Thursday, September 22, 2011 7:35 AM

> Subject: Re: Help

>

>

> awesome post to read first thing in the morning..good job!!!god bless you!!!

>

>

>>

>> I wonder how many there are here, that feel that they don't have much help

>> or support in the real world?? Oh, I've been there! Having

>> expectations on some family members and certainly getting nothing back.Â

>> Yup, the list of the people that I thought were friends and who didn't

>> even call during the treatment time or the cancer.

>>

>>

>> Well, I think it very well could have been my Higher Power preparing me

>> for what was to come!! Many folks in these groups that know my walk,

>> constantly tell me how I'm an inspiration. I certainly do not feel that

>> way; but, sadly, I can tell you, that a few in my husband's family and

>> some friends,either do not see it in that way or just couldn't be bothered

>> to think about it anyway. Yup, it hurt big time!! Still to this day, I

>> can not wrap my mind around that type of behavior!! Thank heavens too,

>> because I wouldn't want to be me if I was that self-centered.Â

>>

>>

>> But, it sure did clean out some of the Pollyanna in me! I've been so

>> blessed to be living in this RV park with the west coasts big trees around

>> me. It gave me a lot of time to search my soul and ask myself where I

>> was going and with whom. I sure didn't want those two-faced people in my

>> life, friends or family. However, it gave me an opportunity to peek out

>> of my circle and see some gals that looked a little lonely and afraid

>> sometimes. So, I have some new friendships, I have the old friendships

>> that did last and I have my family.

>> Now that I have been somewhat prepared, mostly I have my grip on my Higher

>> Power again and that makes me tough. I don't have to go weeding people

>> out of my life now and I'm coming up to my biggest battle for my liver

>> yet. Chances are extremely high that I'm not going to come out of this

>> alive. But, you know, I'm not scared!!! I feel very safe with my

>> Higher Power in the drivers seat and the friends that I could keep. I've

>> cleaned my side of the street. I constantly tell those that I love the

>> most - that I love them.  Even my Dad!! LOL That little old guy now

>> expects to get a " I love you Dad " and a kiss on his head. I think that

>> the only thing that worries me a bit, is the pain!! However, there are a

>> whole lot of folks in this group that live in that pain, so I'm blessed to

>> be directed here.

>>

>> Whoops, I actually started this to say to Annie - ask for that help!!Â

>> There are really people out there that will help while the ones we thought

>> would, won't. You have no reason to be a martyr about this. You've had

>> a rough road and it's OK to ask for help. I would say definitely, if you

>> belong to a church, talk with the minister about it. He/she will

>> definitely know some folks. But the bottom line is - be all right with

>> the big Spirit and I'm sure that your needs will be filled and likely not

>> from where you might think.

>>

>> Luv Gloria

>>

>>

>>

>>

>>

>>

>> ________________________________

>>

>>

>> thank you so much

>>

>> Annie

>> > To: livercirrhosissupport

>>

>>

>>

>>

>>

>>

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Posted
Posted

Bonnie

Know that my heart goes out to you!!!  A temp that high is extremely dangerous

for any adult.  

Also, I know the guilt that still occasionally comes up and hits me from

behind.  The whole of 2010, I cried and was so angry at times that I couldn't

stand it; because my husband was acting like such a jerk.  Finally had to leave

about 5 weeks after liver surgery.  Well, when he died on Christmas Eve, I

didn't even know that he was sick!!  Actually, I think he had just learned

about his lung cancer days before and expressed that he did not want me to know,

because I had enough on my plate.

But, I did have a hard time with the fact, that any time we saw each other from

June on, was usually a huge battle.  I just could not understand.  A couple of

times, he asked me to stay for dinner and it was so nice, that I even thought we

could end up friends.  Then the next day, the evil twin was back.  After all

this time that it's been in my head, going around and around, I came to one big

conclusion.  Not only was there nothing I could have done different; but, I

don't think my Creator wanted any changes to that plan.  It happened and I sure

can't change it!!

We have a little saying in 12 step program.  That's " Screw Guilt " !  Like me,

you reacted normally for the knowledge you had then.  Like my husband, yours

maynot come back; but, you will always have the memories of the good times and

that's how it should be I believe.

Luv Gloria

________________________________

Gloria, since we last talked about my husband and his Hep E.  He was running

the fever of 103.7 and on Wednesday he drove himself to the hospital early in

the morning as he was having difficulty breathing. Turns out he has pneumonia,

which has turned to sepsis.  He is on a ventolator, his kidneys have shut down,

the blood pressure is so low that it cannot get to his organs to help them work,

he is swelling like a balloon, his legs are turning purple because his liver

isnt  working correctly.  The thing is people, I researched this disease,

looked to this group for answers, and to anyone looking for absolutes, like what

will happen if the end is close.....  doesnt always happen that way.  He was

talking to me and then they brought him to ICU and said he needs a mechanical

vent as his pulse is 191.  We had 20 seconds to say goodbye and now he is in

the medically induced coma, there truly isnt much hope.  I love him soo much. 

The guilt I feel is

incredible....I was still mad at him for drinkin and druggin and didnt think it

was life threatning, so i said, serves you right..keep doing things to your

body.  I do want to say if someone is having issues, get them checked out. 

Really all the doctors are doing are keeping him on life support until it is not

prudent and it looks like that time is very close. 

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Wednesday, September 28, 2011 12:17 AM

Subject: Re: hepatic encephalopathy

 

Bonnie

I feel very sad for you!!  It's a lousy thing to live with, even if we do

understand.  Yup, I never knew from one minute to the next what he would be

like.  At least you have some understanding of the disease now.

I'm also sad because it appears that your husband has chosen death over a battle

with the dragon!  But, perhaps it is the only way he can cope, with the Hep C

having done so much damage and the enceph causing so much confusion.  I agree

with Bobby!  We have to wonder how many people have had the brain disorder long

before the true reason has come to light.

I have to warn my son about this since he will be my main caregiver when I get

sick.  Fortunately, he is also an ardent researcher.  He won't just sit back,

not understanding.  The same thing with my mother.  However, it was

particularly hard to tell her about the return of the cancer; because, she also

knows more about it than the average momma bear.

________________________________

 

Gloria, Thank you so  much for your note. I'm glad it was long. I know that my

husband has had a fever of 103.7 for the last two days, and sleeps a lot. 

However, he gets up for a time and then sleeps again.  I am thinking that he

needs to go to the hospital, but am unsure what to say.  He at the very least

should get some labs done, dont you think?  His next appointment for the hep

doc, is in December and that is the earliest.  I appreciate what you said about

the your husband being mean to you.  My husband has always been nice to me up

until now, and we have been together 5 years. Which is why I'm wondering about

the Hep Enc.  I guess one minute he's nice and the next hes irritable and very

grumpy. I wonder if anyone else wondered if their spouse had hep enc, and if it

turned out that they had.  He also has hep c.  The doctors at Lahey clinic in

MA gave him 2 years on this liver...  Thanks again Gloria.

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Tuesday, September 27, 2011 12:44 AM

Subject: Re: hepatic encephalopathy

 

Bonnie

Now I'll try to finish my thoughts!!

Six weeks after my liver surgeryit was still unbelievably horrible in my home. 

So, I brought our travel trailer out here to an RV park, to get away from it for

awhile.  He jumped on that, forced me into a so-called separation agreement and

it just got worse and worse.  At the end of Sept, I forced him to buy me this

39' RV, so that I had a roof over my head.

On Christmas Eve 2010, my husband passed away in the hospital of pneumonia!! 

Not only was his death an absolute shock; but, of course, his kids did not call

to even tell me he was in the hospital.  It was 2 months before I went to move

everything out of our mobile home.  Turned out, he hadn't paid the mortgage for

5 months, so we lost it.  Anyway, I found an Ultra Sound or CT Scan report near

his computer.  Don't know how his kids missed it after their raid, the day

their father died; but, I found it instead.  Turns out, my husband had large

tumours in both lungs.  So the pneumonia was only a complication of the lung

cancer that actually killed him.

When I did some research about lung cancer, I learned that it is the cancer that

affects the brain the fastest of any of the killers.  It has allowed me to find

some forgiveness in my heart for him.  After all, we had been together for 21

yrs.  The absolute very first thing that I did not understand about his

behaviour, was that he was being sooo nasty even though I was waiting for that

very scary operation.  It was like he had no control over what would come out

of his mouth and then would defend himself even though I saw a look of confusion

a few times.  That was not the type of man that he was!!  There just would

never be a time, if he was himself, that I would have ever had to think whether

he would be my strength or not.  It would have been beyond everything that he

stood for as a man, to be anything but my oak tree.  Then there was the time

that he stood looking at me in my office and actually liedto me twice.  I was

flabbergasted!! 

Never, even a hint, would I have believed that it was possible for him to do

that.  He hadn't done it prior to that day, so I sure wasn't prepared for it. 

Therefore, yes, I believe he was suffering badly from the encephalopathy, caused

by lung cancer.  

However, I'm certainly not suggesting that you stay for this kind of abuse.  It

would be that crack cocaine that would scare the socks off my feet.  I simply

would never allow that in or around my home.  I do not feel guilty for leaving

him; because, it was horrible being there.  I gave up a whole lot of material

crap in order to feel safe again; but, none of it was worth my life (or his). 

I feel good now because my niece (surrogate daughter) and her girls (surrogate

grandchildren) have the special furniture etc.  It would have been hers when I

go anyway.  She just got it early - sort of.

One other thing that I do know about alcoholism.  The more you threaten to

leave and don't, the more he thinks he's getting away with such terrible

behaviour.  I do know that if it was just alcoholism, he would be feeling like

such a low life for what he has been doing, although he likely wouldn't own the

behaviour.  But, I don't know about that crack.  Finally, if he's out there

drinking his liver to death, there is not much you can do about it.  Maybe it

sounds awful; but, honestly, he appears to have made his choice.  I had not had

a drink in 15 yrs when I learned about my infection.  Shortly after that, I

realized that " to drink is to die " .

I'm sorry that I have been so long in this post; but, I would just like you to

understand that you do not have to stay when he chooses to drink and drug. 

Doesn't matter about that MELD score.  Drs. will not touch him unless he can

prove he's been sober at least one year.  In this case, I would suggest that he

should be able to also show that he has no interest in drinking ever again. 

Liver or no liver.  Receiving a transplant is a very great gift and should be

treated with much gratitude.  To go right back drinking again would seem like a

sin, as far as I'm concerned.

Luv Gloria

________________________________

 

My husband has a MELD score of 15, this was last evaluated last year.  He has

been drinking and smoking crack cocaine.  He just got out of a residential

rehab and is back out there.  I go to school full time and of course he gets

disability.  Lately he has gone from being so loving to a very mean man. 

(while sober) he goes from being nice to extremely verbally abusive. None of

what he is saying is making sense to me, not that his words dont make sense, but

WHAT he was saying was not nice.  I have decided to leave him, again he

promises to quit drinking telling me that he made a deal with God. I dont know

if it is Hepatic encephalopathy or if it is the alcoholism.  Does anyone have

any experience with this part of the disease???  Thanks, Bonnie

________________________________

To: livercirrhosissupport

Sent: Thursday, September 22, 2011 7:35 AM

Subject: Re: Help

 

awesome post to read first thing in the morning..good job!!!god bless you!!!

>

> I wonder how many there are here, that feel that they don't have much help or

support in the real world??  Oh, I've been there!  Having expectations on

some family members and certainly getting nothing back.  Yup, the list of the

people that I thought were friends and who didn't even call during the treatment

time or the cancer.

>

>

> Well, I think it very well could have been my Higher Power preparing me for

what was to come!!  Many folks in these groups that know my walk, constantly

tell me how I'm an inspiration.  I certainly do not feel that way; but,

sadly, I can tell you, that a few in my husband's family and some friends,either

do not see it in that way or just couldn't be bothered to think about it

anyway.  Yup, it hurt big time!!  Still to this day, I can not wrap my

mind around that type of behavior!!  Thank heavens too, because I wouldn't

want to be me if I was that self-centered. 

>

>

> But, it sure did clean out some of the Pollyanna in me!  I've been so

blessed to be living in this RV park with the west coasts big trees around

me.  It gave me a lot of time to search my soul and ask myself where I was

going and with whom.  I sure didn't want those two-faced people in my life,

friends or family.  However, it gave me an opportunity to peek out of my

circle and see some gals that looked a little lonely and afraid sometimes. 

So, I have some new friendships, I have the old friendships that did last and I

have my family.

> Now that I have been somewhat prepared, mostly I have my grip on my Higher

Power again and that makes me tough.  I don't have to go weeding people out

of my life now and I'm coming up to my biggest battle for my liver yet. 

Chances are extremely high that I'm not going to come out of this alive. 

But, you know, I'm not scared!!!  I feel very safe with my Higher Power in

the drivers seat and the friends that I could keep.  I've cleaned my side of

the street.  I constantly tell those that I love the most - that I love them.

  Even my Dad!!  LOL  That little old guy now expects to get a " I love

you Dad " and a kiss on his head.  I think that the only thing that worries me

a bit, is the pain!!  However, there are a whole lot of folks in this group

that live in that pain, so I'm blessed to be directed here.

>

> Whoops, I actually started this to say to Annie - ask for that help!! 

There are really people out there that will help while the ones we thought

would, won't.  You have no reason to be a martyr about this.  You've had a

rough road and it's OK to ask for help.  I would say definitely, if you

belong to a church, talk with the minister about it.  He/she will definitely

know some folks.  But the bottom line is - be all right with the big Spirit

and I'm sure that your needs will be filled and likely not from where you might

think.

>

> Luv Gloria

>

>

>

>

>

>

> ________________________________

>

>

> thank you so much

>

> Annie

> > To: livercirrhosissupport

>

>

>

>

>

>

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Posted
Posted

Jan

I believe this is very good for you!!

When I left my husband, I wasn't concerned so much about supporting myself; but,

I had to get used to being alone all over again.  At the same time, I was

looking forward to changing my lifeand perhaps really getting to work, on

helping others that suffer from chronic illness.  Truthfully, I never became

very lonely after all and in fact, when the darkness was coming down, I thought

of it as a fuzzy blanket.  I live in a 39' RV, in an RV park, surrounded by

some of the west coast forest.  When it gets dark, it gets really dark because

there are no street lights (lol)  But, for several years, I had really liked my

evenings of quiet on the computer.  So, the only change was that the husband

didn't come and say goodnight anymore.

I really don't have issues with anything in my body except my liver.  Yet, if I

am stressed about an uncomfortable situation, my body will do just as you have

explained.

________________________________

Bonnie - I can certainly understand your feelings. I think they are

fairly common. However, to keep on holding on to the guilt is not

going to do you any good. I am telling you this while i am going

through something similar but on a much lower level than you and your

husband. I am leaving a man who has helped to support me because I

can't live with his value system, wouldn't be able to have home

dialysis here when/if I need it, and a thousand other little reasons.

his health is not good, and I expect to still be involved with seeing

he gets the best care he will allow (stubborn, won't go to the doctor

or doesn't tell them all the problems) he is not an alcoholic, but is

an addict of something I won't specify. I have worked myself up so

much about this and other things since my mother's death in May that I

am having stomach problems with cramping, alternating between diarrhea

and constipation. Also, i am sure the stress is not helping my heart

and the rest of my body either. I am hoping that when i finally tell

him early next week that I am leaving - have the place all ready to

move into - that the stress level will go down. I hope you can

forgive him and yourself and cut down on the stress you are feeling.

I truly believe we have limits to what we can live with, I know for me

they were passed years ago, but I couldn't afford to move until

recently, so I tried to make the best of it. Guess that is what I am

still trying to do. You did what you had to do. You couldn't control

what he did. Be easy on yourself. And the people who truly care

about you will be too. They won't blame you. jan

> Gloria, since we last talked about my husband and his Hep E. He was running

> the fever of 103.7 and on Wednesday he drove himself to the hospital early

> in the morning as he was having difficulty breathing. Turns out he has

> pneumonia, which has turned to sepsis. He is on a ventolator, his kidneys

> have shut down, the blood pressure is so low that it cannot get to his

> organs to help them work, he is swelling like a balloon, his legs are

> turning purple because his liver isnt working correctly. The thing is

> people, I researched this disease, looked to this group for answers, and to

> anyone looking for absolutes, like what will happen if the end is

> close..... doesnt always happen that way. He was talking to me and then

> they brought him to ICU and said he needs a mechanical vent as his pulse is

> 191. We had 20 seconds to say goodbye and now he is in the medically

> induced coma, there truly isnt much hope. I love him soo much. The guilt I

> feel is

> incredible....I was still mad at him for drinkin and druggin and didnt

> think it was life threatning, so i said, serves you right..keep doing things

> to your body. I do want to say if someone is having issues, get them

> checked out. Really all the doctors are doing are keeping him on life

> support until it is not prudent and it looks like that time is very close.

>

>

>

> ________________________________

>

> To: " livercirrhosissupport "

> <livercirrhosissupport >

> Sent: Wednesday, September 28, 2011 12:17 AM

> Subject: Re: hepatic encephalopathy

>

>

>

> Bonnie

>

> I feel very sad for you!! It's a lousy thing to live with, even if we do

> understand. Yup, I never knew from one minute to the next what he would be

> like. At least you have some understanding of the disease now.

>

> I'm also sad because it appears that your husband has chosen death over a

> battle with the dragon! But, perhaps it is the only way he can cope, with

> the Hep C having done so much damage and the enceph causing so much

> confusion. I agree with Bobby! We have to wonder how many people have had

> the brain disorder long before the true reason has come to light.

>

> I have to warn my son about this since he will be my main caregiver when I

> get sick. Fortunately, he is also an ardent researcher. He won't just sit

> back, not understanding. The same thing with my mother. However, it was

> particularly hard to tell her about the return of the cancer; because, she

> also knows more about it than the average momma bear.

>

> ________________________________

>

>

> Gloria, Thank you so much for your note. I'm glad it was long. I know that

> my husband has had a fever of 103.7 for the last two days, and sleeps a

> lot. However, he gets up for a time and then sleeps again. I am thinking

> that he needs to go to the hospital, but am unsure what to say. He at the

> very least should get some labs done, dont you think? His next appointment

> for the hep doc, is in December and that is the earliest. I appreciate what

> you said about the your husband being mean to you. My husband has always

> been nice to me up until now, and we have been together 5 years. Which is

> why I'm wondering about the Hep Enc. I guess one minute he's nice and the

> next hes irritable and very grumpy. I wonder if anyone else wondered if

> their spouse had hep enc, and if it turned out that they had. He also has

> hep c. The doctors at Lahey clinic in MA gave him 2 years on this liver...

> Thanks again Gloria.

>

> ________________________________

>

> To: " livercirrhosissupport "

> <livercirrhosissupport >

> Sent: Tuesday, September 27, 2011 12:44 AM

> Subject: Re: hepatic encephalopathy

>

>

> Bonnie

>

> Now I'll try to finish my thoughts!!

>

> Six weeks after my liver surgeryit was still unbelievably horrible in my

> home. So, I brought our travel trailer out here to an RV park, to get away

> from it for awhile. He jumped on that, forced me into a so-called

> separation agreement and it just got worse and worse. At the end of Sept, I

> forced him to buy me this 39' RV, so that I had a roof over my head.

>

> On Christmas Eve 2010, my husband passed away in the hospital of

> pneumonia!! Not only was his death an absolute shock; but, of course, his

> kids did not call to even tell me he was in the hospital. It was 2 months

> before I went to move everything out of our mobile home. Turned out, he

> hadn't paid the mortgage for 5 months, so we lost it. Anyway, I found an

> Ultra Sound or CT Scan report near his computer. Don't know how his kids

> missed it after their raid, the day their father died; but, I found it

> instead. Turns out, my husband had large tumours in both lungs. So the

> pneumonia was only a complication of the lung cancer that actually killed

> him.

>

> When I did some research about lung cancer, I learned that it is the cancer

> that affects the brain the fastest of any of the killers. It has allowed me

> to find some forgiveness in my heart for him. After all, we had been

> together for 21 yrs. The absolute very first thing that I did not

> understand about his behaviour, was that he was being sooo nasty even though

> I was waiting for that very scary operation. It was like he had no control

> over what would come out of his mouth and then would defend himself even

> though I saw a look of confusion a few times. That was not the type of man

> that he was!! There just would never be a time, if he was himself, that I

> would have ever had to think whether he would be my strength or not. It

> would have been beyond everything that he stood for as a man, to be anything

> but my oak tree. Then there was the time that he stood looking at me in my

> office and actually liedto me twice. I was flabbergasted!!

> Never, even a hint, would I have believed that it was possible for him to do

> that. He hadn't done it prior to that day, so I sure wasn't prepared for

> it. Therefore, yes, I believe he was suffering badly from the

> encephalopathy, caused by lung cancer.

>

> However, I'm certainly not suggesting that you stay for this kind of abuse.

> It would be that crack cocaine that would scare the socks off my feet. I

> simply would never allow that in or around my home. I do not feel guilty

> for leaving him; because, it was horrible being there. I gave up a whole

> lot of material crap in order to feel safe again; but, none of it was worth

> my life (or his). I feel good now because my niece (surrogate daughter) and

> her girls (surrogate grandchildren) have the special furniture etc. It

> would have been hers when I go anyway. She just got it early - sort of.

>

> One other thing that I do know about alcoholism. The more you threaten to

> leave and don't, the more he thinks he's getting away with such terrible

> behaviour. I do know that if it was just alcoholism, he would be feeling

> like such a low life for what he has been doing, although he likely wouldn't

> own the behaviour. But, I don't know about that crack. Finally, if he's

> out there drinking his liver to death, there is not much you can do about

> it. Maybe it sounds awful; but, honestly, he appears to have made his

> choice. I had not had a drink in 15 yrs when I learned about my infection.

> Shortly after that, I realized that " to drink is to die " .

>

> I'm sorry that I have been so long in this post; but, I would just like you

> to understand that you do not have to stay when he chooses to drink and

> drug. Doesn't matter about that MELD score. Drs. will not touch him unless

> he can prove he's been sober at least one year. In this case, I would

> suggest that he should be able to also show that he has no interest in

> drinking ever again. Liver or no liver. Receiving a transplant is a very

> great gift and should be treated with much gratitude. To go right back

> drinking again would seem like a sin, as far as I'm concerned.

>

> Luv Gloria

>

> ________________________________

>

>

> My husband has a MELD score of 15, this was last evaluated last year. He

> has been drinking and smoking crack cocaine. He just got out of a

> residential rehab and is back out there. I go to school full time and of

> course he gets disability. Lately he has gone from being so loving to a

> very mean man. (while sober) he goes from being nice to extremely verbally

> abusive. None of what he is saying is making sense to me, not that his words

> dont make sense, but WHAT he was saying was not nice. I have decided to

> leave him, again he promises to quit drinking telling me that he made a deal

> with God. I dont know if it is Hepatic encephalopathy or if it is the

> alcoholism. Does anyone have any experience with this part of the

> disease??? Thanks, Bonnie

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Thursday, September 22, 2011 7:35 AM

> Subject: Re: Help

>

>

> awesome post to read first thing in the morning..good job!!!god bless you!!!

>

>

>>

>> I wonder how many there are here, that feel that they don't have much help

>> or support in the real world?? Oh, I've been there! Having

>> expectations on some family members and certainly getting nothing back.Â

>> Yup, the list of the people that I thought were friends and who didn't

>> even call during the treatment time or the cancer.

>>

>>

>> Well, I think it very well could have been my Higher Power preparing me

>> for what was to come!! Many folks in these groups that know my walk,

>> constantly tell me how I'm an inspiration. I certainly do not feel that

>> way; but, sadly, I can tell you, that a few in my husband's family and

>> some friends,either do not see it in that way or just couldn't be bothered

>> to think about it anyway. Yup, it hurt big time!! Still to this day, I

>> can not wrap my mind around that type of behavior!! Thank heavens too,

>> because I wouldn't want to be me if I was that self-centered.Â

>>

>>

>> But, it sure did clean out some of the Pollyanna in me! I've been so

>> blessed to be living in this RV park with the west coasts big trees around

>> me. It gave me a lot of time to search my soul and ask myself where I

>> was going and with whom. I sure didn't want those two-faced people in my

>> life, friends or family. However, it gave me an opportunity to peek out

>> of my circle and see some gals that looked a little lonely and afraid

>> sometimes. So, I have some new friendships, I have the old friendships

>> that did last and I have my family.

>> Now that I have been somewhat prepared, mostly I have my grip on my Higher

>> Power again and that makes me tough. I don't have to go weeding people

>> out of my life now and I'm coming up to my biggest battle for my liver

>> yet. Chances are extremely high that I'm not going to come out of this

>> alive. But, you know, I'm not scared!!! I feel very safe with my

>> Higher Power in the drivers seat and the friends that I could keep. I've

>> cleaned my side of the street. I constantly tell those that I love the

>> most - that I love them.  Even my Dad!! LOL That little old guy now

>> expects to get a " I love you Dad " and a kiss on his head. I think that

>> the only thing that worries me a bit, is the pain!! However, there are a

>> whole lot of folks in this group that live in that pain, so I'm blessed to

>> be directed here.

>>

>> Whoops, I actually started this to say to Annie - ask for that help!!Â

>> There are really people out there that will help while the ones we thought

>> would, won't. You have no reason to be a martyr about this. You've had

>> a rough road and it's OK to ask for help. I would say definitely, if you

>> belong to a church, talk with the minister about it. He/she will

>> definitely know some folks. But the bottom line is - be all right with

>> the big Spirit and I'm sure that your needs will be filled and likely not

>> from where you might think.

>>

>> Luv Gloria

>>

>>

>>

>>

>>

>>

>> ________________________________

>>

>>

>> thank you so much

>>

>> Annie

>> > To: livercirrhosissupport

>>

>>

>>

>>

>>

>>

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