Alcoholic Hepatitis - would like some information

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Maustin
New Member


Date Joined Dec 2006
Total Posts : 3
   Posted 12/5/2006 10:26 PM (GMT -7)   
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
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 12/5/2006 11:01 PM (GMT -7)   
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
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


Maustin
New Member


Date Joined Dec 2006
Total Posts : 3
   Posted 12/6/2006 6:39 AM (GMT -7)   
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
 

TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 12/6/2006 11:29 AM (GMT -7)   

Hi Maustin, Welcome to HW. I am so sorry you are going through these hard times! I have been going through this for a year now. He has been listed for a transplant since June. He has been in the hospital several times this year. Stable is only short lived here. He has gone through many confused states to the point of stupor and coma. When the confusion increases we up the doses of lactulose. There are many things that can cause the confusion (encephalopathy), high ammonia levels, infection, electrolye imbalance, etc... My husbands has turned out to be a infection of the prostate, since being treated for it his mind is clear as a bell.  My husband has the nutrition problems like your wife, I have my husband eating small meals several times a day, I am giving him Boost High Protein to help combat his very low albumin levels, the doctor has told me to do this for him (always check with the doctor before adding supplements). It is suppose to help with the fluid accummulation, ascites. They were tapping him every week  always taking more than 10 liters. They put a TIPS in him last month, he started getting fluid everywhere face, arms, legs, stomach. The doctor says it is because of his poor nutrition. Right now it looks as though the ascites and fluid are easing up. Someone also told me regular water tends to cause the fluid build up too and to have him drink flavored water, well to my surprise he has lost 2lbs. of water in the past 2 days.  They have switched my husbands diuretics around so much trying to find the right combination, don't know if it has been found yet! He has been hospitalized from the potassium getting to high also, the aldactone will do that.

Now for your answers, everybody is different, my husband no longer shuffles or falls. He is able to write his name and even take notes. But he would not be able to do something like calligraphy. He is also able to bath himself and dress. He also can carry on conversations of intellectual content. When she becomes more stable, she will be able to do these things. She really sounds like the encephalopathy is not under control. My husband has gone through this! My heart goes out to you, I have been dealing with this for a year now! I have been able to work, most of the time except when the encephalopathy kicks in.

Keep us posted on whats happening, It always helps to let it out!!

((((HUGS))))

Teresa


wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 12/6/2006 10:37 PM (GMT -7)   
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,,,


trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 

Post Edited (wheredidigo) : 12/7/2006 6:12:38 AM (GMT-7)


Shel
Regular Member


Date Joined Apr 2006
Total Posts : 122
   Posted 12/7/2006 1:21 PM (GMT -7)   
Hi Maustin, I'm sorry you are having to go through this. I went through this almost one year ago this month. It's been a long and tough year. It will take lots of patience and understanding on your part. You will have long days as you sound like your already experiencing. You need to be very active in her recovery as it sounds like you are. It will take her time to get back to doing basic things in her life. I know my husband bounced back from his episode about 4-5 months after the initial episode. He too was hospitalized three times. It just depends how the liver function, her amonia levels and if they are being controlled properly and any other medication that she on that will help her. I will have to tell you that if you decide to do the herbal regime mixed with prescribed medication, you need to be very careful. Herbs and medications counteract with each other and could be very dangerous for your wife's liver and make things worse, you need to consult with her docs and let them know what else she is taking. Make sure she is on a low protein low sodium diet, that will help with ammonia levels as well, of course, check with the doc about this as well as everyone is different. Ask lots of questions if you don't understand because it takes a while to understand medical jargon. At least it did for me. Be as supportive as you can because that's what she needs right now. You need to take care of yourself as well. You can't do this all by yourself. If you have family and friends that are willing to help while you go to work, take them up on it. You need your strength and rest to keep up with work and things on the home front. Try your best to take some quiet time when you can. I will keep you and wife in my thoughts and prayers and hope that she will improve.
*Hugs, Thoughts, and Prayers*
   *Shel in New Mexico, USA*
 


Maustin
New Member


Date Joined Dec 2006
Total Posts : 3
   Posted 12/8/2006 9:58 AM (GMT -7)   

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

 


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted Yesterday 10:23 AM (GMT -7)   
Ken , You certainly found the right forum. Everyone here is so nice and supportive. Isn't it great that even if there is not a support group in your area, that's there's a big support group on line. My husband has cirrohsis caused by alcohol also. It's now complicated by liver cancer. He stopped drinking over 2 years ago when he experienced his first encephalophy episode. It scared him straight. But it has been a long hard road. Some days your going to want to throw in the towel and give up. But just step back and get a little rest and recharge your batteries. Trish is right, this is a good place to release your tensions and worries. Hang in there we are all praying for you and your wife. Pink Grandma
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