Husband with Hep C with Cirrhosis

Hi. I am a new member. I found this site through one of my friends moms who was searching for information about elevated ammonia levels. My husband as diagnosed with Hepatitis C in the early 90's. He went through the Interferon treatment back then, but it didn't work. He was also in denial as he continued to drink for many years after that. He would get checkups to monitor his liver enzymes and always told me the doctor said it was manageable.

We moved from the Chicagoland area to Metro Detroit when he decided that he wanted to change jobs. Everything was going okay. He started to feel fatigued more and more and found an internist through one of my coworkers. The internist got the ball rolling with addressing his liver disease. He is also diabetic.

about a year and a half ago, he had started on the Interferon with Ribavarin (sp?) treatment and got very sick from it. We went into the hospital to get a blood transfusion because the Interferon caused him to be anemic. It has been downhill ever since. He was in the hospital a couple more times before we decided that he could no longer work. He started having the HE episodes and I was scared to death, not knowing what was wrong with him.

I have since educated myself about HE and the triggers and symptoms. While he was on a lower dose of Interferon (without the Ribavarin) his ammonia levels seemed to be okay. He is on Xifaxan 550 twice a day and lactulose 15 ml four or five time a day as needed. His levels would get higher every three months or so and he would have to go into the hospital. He was in the hospital last October, January, May, September - it was like clockwork.

He has since stopped the Interferon treatment - the Hep C virus is no longer showing up in his bloodwork. He was on the treatment for a year. He is also on the transplant list for liver and kidney (Oh yes, he also has Stage 3 kidney disease). Ever since he stopped the Interferon, his HE has gotten worse and we cannot seem to get the ammonia level under control like it was. I am wondering if there is a link between the Interferon and toxin control?

This is really taking a toll on me. I will be posting in the caregiver forum and will vent my frustrations there. I have two children, son is 17 and daughter is 13. I work full-time as an accountant for a local non-profit and am going to school to get my MBA.

I am just looking for support - for people who know what we are going through. I get tired of explaining all this to people who ask what is wrong with him because they have no idea. They look at me like I'm speaking a foreign language sometimes!

Thank you for reading my post. Any suggestions for using the site would be helpful since I am new to all this.

We have tried that and isn't working as well as it was. He is currently in the hospital again and the doctor's think he may have an infection somewhere. They tried to do a paracentesis today but couldn't get any fluid. They were going to test it for infection. There is such a chemical balance that needs to be maintained I guess. I will be asking his doctor about the medication. I know that he cannot overdose on Lactulose. At one point they told me to give him as much as 15 ml every three hours to make sure he has the bowel movements. Is there any other medication that would help? What about diet? I know that red meat has high ammonia, but is there anything else that he should be avoiding?

Welcome S69,

  Welcome to this forum.  There are many very knowledgeable people on here, both ill with this disease and caregivers.  So so sorry you even had to find this forum and have a very ill husband.

   My husband has End Stage Liver Disease from Hep C, is diabetic and has been so ill he spent 6 months in a nursing home.  He is now home and we fight the struggle with HE.  He takes lots of lactalose.  Everytime he wasn't thinking very clearly, Dr. says more lactalose...he is to poop 3 x a day and we struggle getting there, but the more lactalose the more clearly he can think....most days.

  He decompensated Feb of 2011 and it has been very difficult since then.  I had to limit work to part time to care for him, now I have to go back and find full time work for financial reasons.  He is now on Hospice, (in home hospice). He has choosen to not get evaluated for a transplant, so our path won't have a happy ending and we have dealt with that. 

   The day to day stuff is really a struggle, and when I read that you are going to school, working and raising 2 teenagers, my heart goes out to you.  This is a very tough road...

   As far as diet that helps, we do mostly fruits and veggies, locally grown, if possible.  No red meat and lots of smoothies.  They help with the BMs.  Smoothie,,,,Ice cream, milk, yougert, fresh fruit, spices, flax seed, honey.  I mix it up.  Sometimes has used avecados, lots of bananas, lots of yougert.  Blend them all to together and he will drink it.  Seems like he will drink smoothies, when he won't or can't eat other food.  If you think he is not getting enough protein, put a Boost drink in the smoothie.  I even put the lactalose in the smoothie and blend it in.  He can't even tell it's in there.

  Feel free to post on the caregivers page.  You will need to ask questions, vent, share or whatever.  It has been a lifesaver for me some days, when I am at the end of my rope.  And I understand what you say about folks not realizing what this is like.  Somedays my husband sounds fine and people talk to him, and think I am nuts when I tell them how sick he is and is on hospice.  Anyway....welcome.

Others will stop by and respond to you, too.

    This is a huge rollercoaster ride, like nothing you have experienced before.  The ups and downs are drastic.  Take care.

Angie1953