Alcoholic Hepatitis - would like some information

Sorry about the length of this but I'd really like some information from anybody that has any...

My wife has alcoholic hepatitis. She was showing signs of jaundice for maybe 4 or 5 months before she finally went to the doctor, who put her immediately in the hospital after her lab results came back. Her alcohol consumption was close to a fifth a day although I never actually saw her drink, couldn't find any alcohol in the house - all typical alcoholic behaviors of course. Anyway, she was in for 12 days (with a focus primarily on helping her through withdrawals) then discharged and not in very good shape - I stayed home from work on leave to provide care for her since she was unable to perform even the most basic personal functions without assistance.

about a week after her discharge, she was complaining of breathing problems so I took her back to the hospital and she was admitted. This time, the focus was more on her liver than her withdrawal from alcohol. They removed a bit over 6 liters of ascites. Her mental state had degenerated considerably due to ammonia and she was put on lactulose (enulose). A scope revealed no varices. This time she was also in for 12 days.

Now, she's home. I'm on 3 months leave but will eventually have to go back to work. She's better than she was just before the second admission but the word "better" is hard to use for someone as sick as she is. She walks - actually shuffles - with extreme difficulty... most of the time with my help. She can shower since I put a chair and handrail in the shower stall, but needs help drying off and getting dressed. She can feed herself ok, but never wants to eat - says it makes her sick.

Her GI put her on cholestyramine to help the pruritis (she was clawing herself bloody from the itching) and she was put on lactulose and xifaxan to help keep ammonia levels down and metoclopramide to help her not feel so full all the time, as well as nexium, a couple of diuretics and potassium, and multivitamins. She's also taking milk thistle and SAMe as a "well it can't hurt and there's anecdotal information that it might help" type of homeopathic philosophy.

She had labs last week and on Friday, her GI called with some guarded optimism as her albumin levels had gone up and her bilirubin count had gone down (I'm not sure the bilirubin count is that much of an indicator anymore though because of the cholestyramine). Anyway it looks like it's possible her liver may be starting to function a bit better. The diuretics were discontinued because of dehydration and the potassium was discontinued due to a high count.

That's the history, now the request for information:

She feels absolutely horrible all the time, can barely walk, functions at a minimal level. Is this typical? If she is destined to recover, what can we expect in terms of time, continued symptoms - will the weakness ever go away? She can't write legibly (she used to do calligraphy a lot) - will fine motor skills come back?

I know, I know, nobody can really answer these questions, but information from people who have been there about their experiences (or from people who have known people that have been there) would be greatly appreciated and very supportive.

Thanks.

Oh, and to answer the obvious first question, no she hasn't had any alcohol of any kind since her first admission. We've moved into a 1-story house from our 2-story house (I moved us while she was in the hospital the second time - I can't afford our old house on my income alone anyway and it will be a long time before she can work again). She can't drive and the only way she could get any alcohol (or anything else actually) is if I gave it to her.

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wheredidigo said...
maustin,first of all,welcome to this forum:)
Im not sure too what degree her liver is damaged,but i do know that cirrhosis does not get better,though the inflammation of the liver may go down with her continued sobriety. Fatigue is a main symptom of liver disease,and though there may be days that are better,,at least in my husbands case he is ALWAYS tired and normally is weak. He has NO muscle tone left on him,just skin and bones. Some of the symptoms you mentioned may not be as severe if she stays away from alcohol long enough to let her body recover properly. i know when my husband quit drinking,he was severely depressed and though it seemed he could barely walk,in fact he didnt WANT to walk,as a matter of fact,he acted as though he just couldnt live without the alcohol. No one here is a dr of course,and without knowing to what degree her liver is damaged,I couldnt tell you whether she is still experiencing withdrawals from alcohol(both physical and mental) or its the liver not functioning properly. please feel free to post on this forum ,not only for answers to your questions,but just to vent sometimes helps,,,being a caregiver is tough stuff and without this forum im not sure id have made it through the last 9 mths or so,,,oh one more piece of advice,maybe you should file for ssd for her,,,this may be a a permanent thing and its best to get the ss process started if thats a possibility,,,,,,,good luck and take care of yourself too.

Trish,

Thank you.  Just seeing a response from someone who's been through this lifted my spirits a lot.  There's no local support group of which I'm aware that I can join and I've felt a bit like I'm lost and flapping in the wind.  This helps.  SS is not a possibility.  Her alcoholism has been severe since '98 and they told us she hasn't accumulated enough ss credits in the past 10 years to qualify.  I've battled alcoholism as well although mine was a fairly recent development - but the results were quick and the cost was severe.  I quit drinking after I had a psychotic episode and was put in a psych ward for a week, 2 months intensive outpatient, 6 months disability, 7 months unemployment - oh it's a real riches to rags story :)  Anyway enough of my personal woes - she has always been supportive of me and now I'm just concerned about taking care of her.  I did manage to get a couple hours sleep last night but she has needed help getting to and from the bathroom and gets up about once an hour; each time is about a 15-minute event.

I'm glad to have found these forums.  Thank you again.

Ken

 

dont feel bad about airing your "personal woes" ,,we all have them and we feel your pain. I am very tired tonight as it is my pool night and im home late but I am glad you found this forum. I too,found no support groups in our area,so this forum is a god-send,,,,hope things will improve with your wife,,,,i tell people im a temporary alcoholic,,only on pool nights and only recently,,,

It's good to learn about others' experiences with this.  Her doctor tells me she has "classic symptoms" but he doesn't really go into the detail I'd like about what to expect or what he sees with other people.  We have an appointment to see her neurologist next week on Tuesday for a follow-up to her last hospital stay.  He ordered a CT and found some damage, but I'm not entirely sure the CT is sufficiently revealing or even the right diagnostic tool at all.  Her neuropathy gets so bad sometimes.....

Anyway, thank you all *so* much for this information and the support!

Ken