what to expect now?

My husband of almost 7 years was just diagnosed w/advanced alcoholic liver disease and was given less than a year.  He is only 29 years old.He was diagnosed in late Jan.  He just came home from rehab.  Over the last few months he has been severely bloated, delusional and has lost over 60lbs in the last 2 months.  He is down to about 80lbs.  he usually was at 145.  He wont eat now and sleeps constantly.  He will only eat a few crackers every few days for the last week and a half.  I don't know what to do...I try not to get upset around him but I can't sleep and i'm afraid I am going to come home from work to find him dead.  I would be greatful for any and all advice.

[Kevin Pho, MD]

End-stage liver disease is certainly a difficult situation - especially at such a young age.  

Unfortunately, there is no medical cure for cirrhosis.  A liver transplant would give the best chance for survival.  Without knowing anything about the medical history - I cannot say whether your husband is an appropriate candidate.  

I would discuss this option with his personal physician or hepatologist.  

Another option is to explore the possibility of visiting nurses to come to the house to help with his medical needs.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_b

[scared young wife]

I also forgot to mention he has had 2 bouts of panceatis(?) in the last 2 years.  I am so incredibly scared right now, I love my husband and we want to have kids some day.  I have no one to really talk to about this.

[Biskie2]

There is a chat room/forum at ***@**** that might help you.

[Liver test]

sorry to hear, hope the best. Can i ask how he found out.
Biopsy ect. I think i have the same thing but my Dr. will not
listen to me or do a biopsy. I have the symptoms and drinking
past. im only 38. i had a biopsy 8 months ago that showed
minimal fibrosis, slight fatty liver, and portal imflammation.
took alot of meds for 3 months now i have symptoms of
cirrhosis. Dr. does not believe i could of gone to cirrhosis
that fast and does not think the pills could of hurt my
liver that bad. took the meds after the biopsy. Any helpful
ideas.symptoms i have, weight loss, bloat, growling in my
stomach all the time, dont want to eat. problem is my
lft and cat scan just came back normal, doctor wont do anything
else

[odc]

Please consider checking with the hospital for support services for you - support groups, counseling etc. They can give you some comfort at this time.

[scared young wife]

I came home from work tonight to find my husband semi-concious and the bathroom cover in blood.  He had thrown up blood everywhere.  I called 911 and he was rushed to the hospital.  He is currently in ICU.  He has lost more than half of his bodies total amount of blood.  They are going to put a camera down his throut and see if the veins have ruptured.  I am mentally and physically drained right now.

[worry1]

you where very smart in calling 911 he would have bleed to death they are probly going to do some bandings he is really young to have this how much did he drink and how long?Does he have a family history of liver problems?You need to find out his meld score to see where he fits in for a liver transplant in the us they go by a score to see who gets a liver first here are some sites that can help you http://forums.delphiforums.com/n/main.asp?webtag=friendship7&nav=start&prettyurl=%2Ffriendship7  There is another site on there hosted by imkindly its a liver support group that can give you alot of info and how to go about getting a transplant faster.I just cant understand how he got that at a young age he most have been a heavy drinker beause the liver has the power to heal its self from alot of blows to it most the people at his age its mainly from hep-c is the cause i wish you luck and your husband gets the care he needs it will not hurt to really dig in reading on what he has so you can get the most out of his doctors

[scared young wife]

He was a very heavy drinker for more that 10 years.  he would deink a fifth of whiskey a night at the very least.  On average he would drink the whiskey and 12-18 pack of beer.  I have been trying to read anything and everything I can concerning his condidtion.  I will check out the web sites you suggested, I truely appreciate it!

[worry1]

liverproblems by what you say you have just a little damage to your liver i would just stay away from acl and eat very liver friendly meals your liver has the power to heal its self and them meds wouldnt be enuff to mess the liver up!!And as for the biopys the more you get the more chance of have you liver really being damaged that is why they will not give you another one you have the chance to have bad bleeding problems from biopys i would just have them keep checking your liver blood tests are heptic pannel tests and just do it every six months.Iam in the same boat as you always thing my liver is a gonner from drinking iam only 35 but i have came to turms to when to call it quits i when threw every test known to doctors besides a biopy my gi doc will not give me one because of the risk in really messing up my liver

[scared young wife]

he had also used steroids for a while along with an extreme amount of ephedrin.  His doctor has been very frank with me concerning my husbands condition.  He has been to rehab in Feb.  and was doing very well.  The doctor flat out told me that he has a very slim chance that my husband will be able to get on the transplant list.  The last time he was admited the doctor told me to begin to make arrangments for him passing. They told me last night that if he does come home i will need to set up hospice.

[jaz1314]

Hepatitis C is a very strange disease. I am very fortunate not to be progressing but am curious as to why. Ive seen toher people with porro prognosis, in fact my ex's husband had a transplant two years ago and now the new liver has been deteriorating and he loooks 9 months prengant (Acites (ascites)) after having been drained just a couple days ago at Philly.  Anyway my history...

1970's I was a drug user for a few years, speed, cocaine, heroin..what a mess. 1979 I jaundiced and went to the hospital where I was diangosed with hep B. from 1980 on I was clean except for enjoying my wine at night (2-3 glasses) . My liver enzymes were always double what they should be. In 1989 I had a polyp observed in my gall bladder and ended up having my GB removed, durng that procedure I had my first liver biopsy.

The results of the biopsy were portal inflammation and some fatty infiltration but positive for Hep C. I wonder if the 1979 diagnoses was correct.

I did an intereferon treatment for 6 months where my viral load became undetectable. After stopping treatment the viral load came back to 300,000. A couple years later I repeated the treatment, same results.

I didnt pay much attention as I always felt good! Lots of energy, no symptoms other than the high liver enzymes. In 2001 the biopsy was repeated. No change. No cirrhosis, no cancer, jsut portal inflammation and some fat infiltration. Doc suggested Intereferon again with Ribavin. I tried it and stopped after two weeks, I felt HORRIBLE!

Had blood work done last year and viral load was now 1 million.
Genotype 2

So now I had a surgery to correct GERD ( Nissen Fundoplication ) and had them do antoher biopsy. Results are:


Chronic portal triaditis, suggestive of chornic hepatitis
Steatosis
Iron stain shows normal reticulin pattern
Trichrome stain shows mild lobular and portal fibrosis without bridging or evidence of cirrhosis.


So being 46 and having had chronic hepatitis for 27 years and fairly good biopsies, my questions are:

1) Should I really be concerned anymore? One doc told me I would die of old age first!

2) Why me? Not to sound ungrateful but what is it about me, my body, my life style that keeps this virus at after all these years? Ive always been told to stop alcohol intake completely but never did.  (I am NOT recommedning that anyone not stop!)

3) What causes some Hep C to be "active" as compared to "chronic persistent"?

Thanks

Jaz

[PattysPursuit]

I am so sorry to read about your husbands situation. Please go to the Liver Failure Forum, they are experts in this field as they have lived it and can help you through this.

Here is their URL: Here is their URL:

http://forums.delphiforums.com/liverfailure/start


You both are in my thoughts and prayers:)

Patty

[bubbaswife]

Dear Scared...  The only thing I can tell you is that he MUST stay sober!!!  If he stays sober, and has 6 months documented sobriety (through rehab/AA/whatever) then he can be eligible for transplant if he has no other health issues preventing it.  My husband is currently 2 months post transplant and life is now a blessing.  I support group that may be able to help you more is http://forums.delphiforums.com/liverfailure/start if this isn't a clickable link, then cut and paste it to your browser.  It is a free forum, but it is for end stage liver disease and is full of many wonderful people who have either been there, or are going through it.

I hope this helps, and I hope you will come visit us there.

Hugs and Prayers being sent to you,

Bubbaswife

[a1a]

Al-Anon support groups meet most everywhere.  Experience of thousands and thousands whose loved ones have or have had alcohol problems have gone into the materials.  Many you would meet will have spent years considering what another's alcoholism has done to them.  No one in the meeting will be someone who has not been disturbed by a loved one's drinking.  Most have not faced as severe problem as you face, but some you would meet there have suffered even worse problems.  But there is no situation that can't be bettered.  These meetings are not about the alcoholic, but the welfare of one's own self.  Sometimes, often even, there is nothing one can do for the loved one but take care of one's own self.  Sounds selfish and like abandonment to take one's anguished attention away from the alcoholic loved one for even a second, but you are better company and more helpful loving and comforting if you have achieved some calmness for yourself.  From your telling, somewhere in the middle of all that sickness and life-disappointment that your husband is sufferering is love of you.  Many years later I understand that my father, who died mostly caused by his alcoholism, loved me every bit the best he was able.  He hated helplessly what it was doing to us and wanted better for us.

[Ernie's daughter]

Your last entry was in March....what happens next???  My dad has gone through similar and is home for the time being but what's next??

[Ernie's daughter]

Scared young wife, thank you for the counseling tips, but how much time does one have after the incident in the bathroom???Please write back.