Hello from a new member

My husband of nearly 20 years was diagnosed with end stage liver disease caused by many years of heavy drinking in 2006.  He has been sober just over 2 years. His sobriety is not a significant issue at this time.

He is being treated by doctors at the local transplant center.  His MELD score has remained so low that he has not yet been evaluated for a transplant, however his symptoms including chronic pain and Hepatic Encephalopathy have required him to leave his job and go on disability.  The biggest stress on our marriage is his Encephalopathy.  He takes lactose on a daily basis, but he is still plagued with issues of poor coordination, memory loss, confusion, mood swings, ect. I came to the group for some support in regard to this issue. I am open to any suggestions in regard to how to live with him on a day to day basis when I am never sure who I will wake up to.

[kwill531]

I was reading the posts trying to get an insight for caregivers of encephalopathy.  Yours could have been written by myself.  I realize this post is a little dated, but I'm hoping you are still out there.

Encephalopathy is a horrible part of liver disease and a roller coaster ride for all of us.  In your post, you stated that you never knew who you were waking up to,  I know this feeling.  My husband can get very mean, even with his weakness.

Have you found any help yet?

I'm not going to go into alot of stuff on this particualr post, but if you are still out there I hope that maybe we can be of some support for each other,

Karen

[Teach4]

Do you think he is depressed?  I take lactolose and it doesn't help with mood swings, forgetfulness,  coordination, memory or confusion. Truthfully, I don't think it helps in any way, but I still take it because my dr. said to.  I had problems as mentioned above before the liver disease diagnose- stage 4-end stage.

I do know that we are not advised to take antidepression med's, but a small dose of xanax has helped me.  Hope this helps.

When I go on this site, most of the questions go unanswered....... do you know why?  Isn't there suppose to be professionals answering our questions?

[Jody515]

In relation to your question about professionals answering the questions that would be true if you go back & look at all the forums which have the doctors on them.  If you click on the forums on the right hand side you will find a list of forums which have doctors that answer your questions.
The forum you are on now is just a support forum for persons with the same issues.
Hope this helps some.  Jody

[mikesimon]

Rifaximin Plus Lactulose Reduces Severity of Hepatic Encephalopathy

By Martha Kerr

SAN FRANCISCO (Reuters Health) Nov 04 - The non-absorbed antibiotic rifaximin (Xifaxan, Salix Pharmaceuticals) added to standard treatment of hepatic encephalopathy with lactulose significantly reduces the number of hospitalizations for hepatic encephalopathy and shortens the length of hospital stay.

Those findings were presented here at The Liver Meeting 2008, the annual meeting of the American Association for the Study of Liver Diseases (AASLD) by Dr. Parvez S. Mantry of The Liver Institute at Methodist Dallas Medical Center, Texas.

Dr. Mantry described a retrospective review of medical records of 123 patients with end-stage liver disease seen on the liver transplantation unit at his institution. Fifty-eight of the patients received lactulose monotherapy for a mean duration of 24 months, while 65 patients received adjunctive rifaximin, 400-1200 mg/day, for a mean duration of 14 months after lactulose monotherapy.

"The risk of hospitalization for hepatic encephalopathy during adjunctive rifaximin treatment was 87% lower than during the preceding period with lactulose monotherapy," Dr. Mantry told meeting attendees.

Mean hospitalizations per patient were 0.26 with rifaximin plus lactulose and 0.95 with lactulose alone, for an odds ratio (OR) of 0.13.

The mean duration of hospitalizations for hepatic encephalopathy was shorter during adjunctive rifaximin (1.1 days) compared with lactulose monotherapy (2.4 days).

Treatment, age, and MELD score were independent predictors of hospitalization for hepatic encephalopathy.

"By reducing hospitalizations, rifaximin may reduce morbidity associated with hospitalization and overall costs associated with hepatic encephalopathy," Dr. Mantry concluded, adding, "Prospective studies to further investigate the potential therapeutic and pharmaco-economic benefits of rifaximin for hepatic encephalopathy are ongoing."

From:  
http://www.medscape.com/viewarticle/583017?sssdmh=dm1.401126&src=nldne

[luvinwife]

I'm sorry to hear anyone else is going through all this, but glad to know I'm not the only one. My husband was dx'd w/end stage Cirrhosis over 3 yrs. ago, and we've gone through the gamut ever since - it's still a one-day-at-a-time medical (&emotional) issue, but he seems to be getting decidedly worse, especially the encephalopathy. To complicate things further, we have a 19-yr. old son who lives at home w/us. He has Autism & Intractable Seizure Disorder, with a low IQ, so he doesn't understand any of this.
My husband stopped drinking for 2 yrs., after he was dx'd, but he started again over a year ago, so he's really going downhill. During the time he didn't drink, he suffered several mini-strokes (ISAs) and one big one. I'm amazed that he hasn't been in the hospital since then, which was almost 2 yrs. ago.
I don't know how much longer he can go on like this, while drinking so much - at least a 6-pk of beer + 2-3 glasses of wine per day. Any advice is appreciated, and good luck & prayers to everyone.