Any advice is appreciated

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New Member

Date Joined Oct 2008
Total Posts : 1
   Posted 10/30/2008 10:17 AM (GMT -7)   
Hi everyone.  I can only say thank you for all of you who post here because I've been trying to find information on the web and can't.  Thank you for being here, and it's nice to meet you!
My brother called the other day and said he has end stage liver disease due to hep C and cirrhosis.  He is 48 years old and was a heavy drinker for 29 years.  He quit drinking last year because of his liver disease.
He has no energy and can't travel anymore, sleeps all the time and is now hallucinating due to ammonia buildup.
They had him on the national donor list, but after last month (he collapsed in a coma at work and was in it for 5 days) they took him off and said there was too much else wrong with him to receive a transplant.
I am not a medical person and I don't understand what all of this means.  I know that he is terminal, but he lives a long way away from us (too long really for my father to travel) and I'm trying to loosely determine how much time he has so I can prepare my dad to travel.  We were hoping to go after the 1st of the year - my dad had a bypass last week - but I don't know if it's going to be possible any sooner than that.  But, then again, I don't know how long my brother has.  My dad's doctor won't release him to travel until early January because of some other health problems.  My sister-in-law says that my brother seems to be getting weaker and less able to do things week after week but even his doctors don't know. 
Does anyone have any advise?  Any comments at all would be appreciated. 
Thank you very much.

Elite Member

Date Joined Jul 2005
Total Posts : 12014
   Posted 10/30/2008 3:35 PM (GMT -7)   

Hello, Froggymama, and welcome to the forum.  I am sorry your brother is so ill.

Unfortunately, nobody will be able to tell you how much time your brother has left.  The reason for this is that this disease is different with each person.  Some can be in bad shape for years, but somehow cling on.  Others decline rapidly.

You said your brother has other medical problems.  That can also play into how well he does and how long he will be around.  It's great that he stopped drinking last year...that is the single best thing he can do.  However, there are other things that must be done to give him any kind of chance.  First is diet.  He needs to eat lots of fresh fruits and veggies and pure water.  Meat should be at a minimum, and NO RED MEAT.  The reason for this is that it is the most difficult food for the liver to break down, so with a damaged liver it can actually be toxic.  He should be taking a daily multivitamin w/o iron, 500 mg of vitamin C, and 400 I.U. of vitamin E.  He may need other supplements, depending on his blood work.  That is something he should discuss with his doctor.  Hopefully, he is seeing a hepatologist (liver specialist.)  He should also limit or eliminate salt from his diet, as it causes edema and ascites (swelling in the belly from fluid.)

Do you know if he is being given Lactulose?  If not, he should be.  That is prescribed for those with high ammonia levels, which cause mood changes, hallucinations, being in la-la land ("out of it"), and even coma.

Lack of energy, fatigue, sleeping a lot...they are all a part of liver disease.  I was diagnosed with chronic active hep C back in '93, at the age of 50.  I also drank alcoholically for 23 yrs. (sober now for 22 yrs.)  No matter how much sleep I get, it's never enough and does nothing for the sense of fatigue...which I can only describe as walking through molasses.  I am also a liver cancer survivor.  The cancer was caused by the hep C.  Since cancer treatment, I do have a little more energy than I did while I had the cancer, but can still only do so much before I am "wiped out."

I hope that some of this information will help you to understand what your brother is going through.  Was he ever treated for the hep C?

I know you will find a lot of support and info here.  If your brother can get on a healthful diet, it should help him to feel better.

"But that was yesterday, and I was a different person then."
Alice in Wonderland, Lewis Carroll

Veteran Member

Date Joined Oct 2007
Total Posts : 954
   Posted 10/30/2008 5:04 PM (GMT -7)   
Hi Froggymama and welcome to the forum. I am so sorry that your brother has this terrible disease. I agree with everything Connie has said. There is no real way of knowing how long a person has with this disease as it progresses differently with everyone. My husband was diagnosed with cirrhosis a little over two years ago and hep C around 14 years ago. He has frequent bouts of encephalopathy and problems with edema but otherwise remains stable. He has suffered with fatigue for many years now. It has progressively gotten worse over the years. He sleeps a lot and if he does anything strenuous he can barely function the next day.

I do know that prayer helps. I will be praying for you and your family.
There is always hope!

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