Cirrhosis Support Group

I am new to this group, but not to MDJ. I am a GL on the Emotional Abuse board and the Bullying board.

Over the summer, my brother was diagnosed with end stage liver disease and I am having so much trouble getting answers. He never married so all of his care - physical, emotional, etc. - is falling to my mother and me. He is 50 years old and has a teenage daughter. We had to transfer custody of her to his ex so that he could move out of state to my mother's house where she is now taking full time care of him.

It all started for me on 4th of July. That's when he called and said he needed me to drive him to the hospital. I hadn't seen him in months prior to that. He wouldn't answer my calls or his door, which was pretty typical for him when he was battling depression and not taking his meds. Anyway, when I saw him, I was shocked. He was as yellow as a crayon and he looked like a 70 year old man. He could barely walk to the car. At the ER, he threw up something that looked like coffee grounds and it freaked everyone out. They were already bustling around him, but that kicked it up to a new level. They said it was dried blood and he was bleeding internally. Eventually, they discovered several ulcers in his stomach that were bleeding. He was worried about needing surgery, but I overheard one of the nurses say, "Sir, we haven't even reached that point yet. Right now, we're just trying to save your life."

He ended up spending 4 days in the ICU, getting plasma and eating a "no red" diet. As soon as they unhooked the plasma though to discharge him, his blood began thinning out again and when they took the IV out, it spurted all over the room, the bed and his pants. He hadn't gone to the bathroom in five days and they were concerned about that too. His doctors said he had every complication in the book - jaundice, mental confusion, internal bleeding, kidney failure, bloating, cirrhosis and everything else. I had the feeling they were sending him home to die and I refused to let that happen. I looked into donating part of my liver to him, but was told that his liver damage is so bad that he doesn't need a part ... he needs a whole new one. Also, I'm not a compatible blood type.

I called everyone I could think of and we all mobilized to get him to AZ where my mother would care for him full time. She flew in and began caring for him as soon as he was released. I took over all of his legal matters, such as selling his car, his condo, applying for SS disability benefits and appealing the denial of disability benefits from his work. Someone else took over his medical stuff and another person took over coordinating all the visitors who wanted to come and see him before he left. It took us three weeks to get him cleared to go. In that time, he started looking a little better because my mother was cooking for him (no salt diet) and he was taking his meds regularly.

Now he is out in AZ and while I haven't seen him, my mom said he isn't yellow anymore and he doesn't need a cane to walk either. My mom makes it sound like he's turning around, but I don't know how that can be. He's still very tired ... takes a few naps a day ... but he does try to get out for exercise, like walking down the block or walking in the pool. He sees so many doctors that I can't keep track, but my mom told me that just a couple of days ago, one of his doctors called to say that his blood platelet levels are so low that he really needs to be careful not to do anything to injure himself.

I brought his discharge paperwork to my own doctor, showed it to him and asked how long a person can live without a functioning liver. He read the reports and then said that my brother's case was the "worst case scenario", but that he's seen patients like that live up to a year ... maybe even two years if they are lucky. He said that what generally happens is that they get more and more tired, take more and more naps until there is one they just don't wake up from.

I'm just wondering what you all think. The reports I get from my mom seem to be at odds with what I hear from the doctors. Can anyone please give me some insight here? Thanks!

Has the CAUSE of the cirrhosis been determined? If the cause can be stopped, damage can stop progressing and with medical support, he can improve a great deal. He'll always have cirrhosis at this point but he might not progress to death as quickly as it seems. HE NEEDS A HEPATOLOGIST. Other doctors really DO NOT KNOW. Medical staff DO NOT KNOW. It's true and difficult to have to wait for a doctor that actually knows cirrhosis.

But then, even a hepatologist will not know all the answers because everyone progresses at a different pace. Not everyone experiences the same terribly symptoms, some seem to experience them all but not as bad as another person who might actually be sicker....

Thank you so much for replying. The cause of his liver damage is alcohol. He's stopped drinking and has been sober for three months. He sees a hepatologist, a liver specialist, a kidney specialist, an internist and a psychologist. From what I've been told, there is no liver function in him at all. His kidney doctor said his kidneys are working double time trying to pick up the slack for the non-functioning liver. He's already had one procedure where they drained three liters of fluid out of his belly. I imagine his kidneys can't keep this up forever though.

Tell him often that you are proud of his stopping the alcohol. Tell him for everyone here. We see the devastation of alcohol often though not all cirrhosis is caused by alcohol. Many people here have seen people come back from near death to live a long time.

Really? So how long can a person live without a functioning liver?

And I will definitely pass along your good wishes! He attends a lot of AA meetings ... about 3 or 4 a week. Living with my mother has also helped a lot. Plus his doctor has told him that he needs a year of sobriety before he can be put on the transplant list - that is, if his insurance holds out.

When one is in true liver failure, death is imminent. Patients have been known to live for quite some time on very minimal liver function though. Tam's right about many of us here being on death's door at one time, but with strict adherence to doctor's orders, med routines, diet, AND eliminating alcohol forever, some function can return and a relatively normal life can be achieved. Keeping you all in my prayers! Bj

Post edited by: bjlvls, at: 09/29/2011 07:38 PM

Been to yellow and back and most all the other things that go with liver failure. I was at pretty minimal liver functions for over a year before I finally reached liver failure. With my transplant last February I now expect to live a long time. The one number I followed was my MELD score. I couldn't focus well enough to worry about anything else.

Our prayers go out to you!

I believe the rule at my transplant center was six months alcohol free. There are a couple of transplant centers in Phoenix so you may want to check rules at all of them.

I think he is working with one in Phoenix already. My problem is that he may be losing his insurance coverage through work soon. That could change everything.

Peace to you, and strength.

This isn't easy.

You are doing a good job with your brother, and is sounds like your mother is too. What she is doing, with his diet, and everything, is helping, it sounds.

I am curious if he is able to get a transplant. (Sorry, I read back through and my questions are answered.) That would be wonderful. Congratulations to him on his sobriety.

Hugs

Amy

I'm not sure how long a person can live without a functioning Liver, and don't think that mine is completely non-functioning at least not yet. Though it is minimally functioning, I have a supersized Liver and Spleen, by the time I was diagnosed last Sept. My platelet count was down to 51,000 and I had a slightly elevated INR so nobody wants to do a byopsy. The ultra sound shows a good deal of nodularity of the Liver so the doctor says there is no doubt about the Cirrhosis. I'm really thinking I need a byopsy and some other tests, but anyway.

I'm not sure just how well this all relates to your brothers condition, He sounds to be a little worse than me but maybe that's because he is only very recently diagnosed and hasn't started on a good treatment program yet. Stopping the alcohol is the biggest step Good job on that. I don't know if Cirrhosis patients who have been alcoholic need it but I've had good results with Dr. Cabot's Liver Cleansing Diet. You can get the book on Amazon. My Cirrhosis is just out of the blue. I never drank but I would think that this diet will help clean up his liver and get it functioning as best it can.

That's about where I am now and my doc. says I don't have any healthy Liver tissue now just damaged tissue but some of it still works, must be I'm still here and doing pretty well. I'm really starting to believe him, he says I could go on like this for many years without ever needing a transplant. Some friends here and on other sites have told me that once they were stable they went for a long time in pretty good health, one has gone more that 13 years now.

So tell your brother to hang in there you can live a long time with this thing and there is a lot of good research going on.

I'll be praying for all of you.

Peace and Joy to you

Paul