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Old 05-22-2010, 11:54 PM   #1
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jason731 HB User
End stage liver failure, now what?

Hi,

My dad, 59 has been diagnosed with end stage liver disease (brought on by alcohol abuse). The gastro said his liver was functioning at 10%. About a month ago he had an episode where he became very confused, no idea what he was doing or where he was, and he had gotten so weak he hadn't gotten out of his bed for two days and hadn't eaten anything (he lives on his own).

We had him admitted and they gave him more lactulose and he got "better" in that he was no longer confused, had more energy and was then discharged. Things looked good for him for a few weeks, his mood was much better, ascites was improving. But in the last few days he's gotten very weak again. I was there to visit him and he wasn't strong enough to even hold the phone up to his ear, nor could he hold a cup of tea for more than a few seconds. He couldnít hold his head up to look at me while talking, and even when talking, heís just mumbling his words, and finding it hard to breath. Heís not really confused, though he got the days mixed up Ė he just doesnít seem to be all there (maybe due to the exhaustion)

Iím noticing his mood is worsening also, on the phone today he keeps telling me to stop worrying and that heíll be fine and I need to get back to work and on with my life, and that I should leave him alone. And his jaundice looks as bad is it ever has (it comes up clearly through our brown skin). He also has the shakes, always trembling, and always cold. He also usually sleeps at least 18 hours a day, but last night said he couldn't get to sleep until 5am

So thatís most of the info I can think of. Iím after some information about how much longer heís got. Iíve been reading about Hepatic encephalopathy, and my worry is that with the weakness, low level of consciousness, the shakes, and his other symptoms, he might slip into a coma in the next few days. Does anyone know about timing? Is it really days, or weeks or months? The gastro said he would ďwax and waneĒ so Iím wondering if thereís a chance heíll recover from this lowpoint for a month or so, or should we be getting ready to say goodbye?

Thanks for taking the time to read,

Jason.

 
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Old 05-23-2010, 12:51 AM   #2
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Re: End stage liver failure, now what?

Jason,

I'm so sorry you are going through this with your dad, it is heartbreaking. I just went through it with a dear friend of mine, who passed last August. I was at his side until the end.

My friend was at the stage of terrible ascites, that actually had to be drained out several times, but it always came back quickly. He became practically orange with jaundice, and the end came when he lost control of his bowels...That was it, he was put into the hospital where he improved enough to visit with for a few days, and then hospice came in and basically put him to sleep. He passed two days later, very quietly, in no pain.

I would just try to keep your dad comfortable, but be prepared if he takes a turn...it can happen very quickly. Hopefully someone can check him often, and keep him hydrated and fed.

Again, I am so sorry.

 
Old 05-23-2010, 07:12 AM   #3
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grandma2o2girls HB User
Re: End stage liver failure, now what?

Every person is different. My husband was diagnosed on June 08, with the same symptoms you are describing, and he passed away Jan.09. His stomach had bloated up to where he had to literally hold it up when he walked. He showed signs of confusion the last 4 months. He was jaundice. His pee (what there was of it) was rust colored and he could no longer have bowel movements altho he felt he needed to.
Please check on him, but really he shouldn't be alone. It is horrible and he does need someone there with him.
Just my opinion.
Sorry you are having to witness something so terrible. And I am sorry for your dad. My husband was a drinker also.
Take care
Darlene

Also he may have bleeds , nose, vomit, etc. and he needs someone there in case he cannot get it to stop. I had to take my husband to urgent care to get the nose bleed to stop.

 
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Old 05-24-2010, 06:56 PM   #4
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HankL HB User
Re: End stage liver failure, now what?

Quote:
Originally Posted by jason731 View Post
Hi,

My dad, 59 has been diagnosed with end stage liver disease (brought on by alcohol abuse). The gastro said his liver was functioning at 10%. About a month ago he had an episode where he became very confused, no idea what he was doing or where he was, and he had gotten so weak he hadn't gotten out of his bed for two days and hadn't eaten anything (he lives on his own).

We had him admitted and they gave him more lactulose and he got "better" in that he was no longer confused, had more energy and was then discharged. Things looked good for him for a few weeks, his mood was much better, ascites was improving. But in the last few days he's gotten very weak again. I was there to visit him and he wasn't strong enough to even hold the phone up to his ear, nor could he hold a cup of tea for more than a few seconds. He couldn’t hold his head up to look at me while talking, and even when talking, he’s just mumbling his words, and finding it hard to breath. He’s not really confused, though he got the days mixed up – he just doesn’t seem to be all there (maybe due to the exhaustion)

I’m noticing his mood is worsening also, on the phone today he keeps telling me to stop worrying and that he’ll be fine and I need to get back to work and on with my life, and that I should leave him alone. And his jaundice looks as bad is it ever has (it comes up clearly through our brown skin). He also has the shakes, always trembling, and always cold. He also usually sleeps at least 18 hours a day, but last night said he couldn't get to sleep until 5am

So that’s most of the info I can think of. I’m after some information about how much longer he’s got. I’ve been reading about Hepatic encephalopathy, and my worry is that with the weakness, low level of consciousness, the shakes, and his other symptoms, he might slip into a coma in the next few days. Does anyone know about timing? Is it really days, or weeks or months? The gastro said he would “wax and wane” so I’m wondering if there’s a chance he’ll recover from this lowpoint for a month or so, or should we be getting ready to say goodbye?

Thanks for taking the time to read,

Jason.
I have a 42 year friend that was in the hospital with alt and ast nearly 100 and bilirubin over 20 just a few months ago, after getting the doctors to reduce her sugar intake, sugar alcohol and some of the useless drugs and with Piccrorhiza, Schizandra, Milk Thistle, and SAMe all liver functions are now back to normal. It was nearly unbelievable. Some of the doctors had considered her in end stage liver disease.

Last edited by HankL; 05-24-2010 at 07:00 PM.

 
Old 06-11-2010, 03:04 PM   #5
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cburris HB User
Re: End stage liver failure, now what?

My fiancee is in end stage liver disease also from Hep C. Diagnosed in 2005. He had a bout with Hepatic Encephalopathy in 06. They took him off chemotherapy because of the Encephalopathy but he still cleared Hep C. They gave him a year to live in 05 but he is still going.

The fatigue and sleep problems are very common. If the doctors prescribed Xifaxan when he had Encephalopathy, make sure he is taking it. If they didn't prescribe Xifaxan, I would call and ask them to prescribe it. It works for Encephalopathy but also helps clear his mind when he has trouble thinking.

My fiancee did not go into a coma but I think he was close. He did not know what year it was and nothing he said made sense. Just keep an eye on him. The fact that he is talking to you over the phone is a good sign. If he gets to the point where he isn't making sense, get him to the ER.

Keep reading! I know alot about liver disease and most of the knowledge that I have is from research on the internet.

The disease progresses differently for everyone. He should drink alot of water and stay away from caffeine. He should try to stay on a low protein diet. Just hang in there. Like I said, they gave my fiance a year and he is still going. Very fatigued and deals with alot of pain but he's still here. A support group would be great if there is one in your area. Good luck and God bless!

 
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