Toonces1

My dad had many many things happen in that 15 years that could have killed him. He is actually still alive but in very grave condition with hepatic encephalopathy, so he doesn't have long. The first problem he had was esophageal varices (have no idea how to spell this). He actually had 3 episodes of bleeding over the course of about 10 years, and had them all banded. He has taken propranolol for this. This is a very serious condition, esp. w/my dad because he has hemophilia. I have read that the fatality rate for this complication alone is up to 30%. The important thing is catching it early so you don't loose too much blood. My dad has had anemia and has had to get blood transfusions quite often (this is how he got Hep C in the 80s). He has battled ascites (again, spelling?) for about 5 years now. He has had to make regular trips to the hospital to get IV diuretics to pull off the fluid. He usually got lasix, but that stopped working so he started bumex, which works well. About a month ago before the encephalopathy really got bad, he had about 50 extra pounds of fluid in his abdomen, and it started moving into his lungs, so he had to go to the ER to start the IV immediately. This condition can can basically make you drown, but there are quite a few medications that work well for it. My dad had very low levels of albumin, so he got that regularly via IV and it helped keep fluid off for a long time. it is very expensive, though, so you should make sure your insurance covers it if you are choosing a plan. Some doctors refused to give it to him because they said it was too expensive.

The other things that have been attributed to his liver are an increased risk of infection. He has had quite a few blood infections such as MRSA, and then the anemia. Basically, the ultimate thing that the doctors can't do anything about at all is the ammonia level, which is causing his condition right now.

He lived for about 10 years with relatively few serious problems except the varices, but the last 5 years have been one thing after another.

If you are pretty young yet and have this diagnosis, I would definitely consider a transplant. My dad was not a good candidate because of his other health problems like the hemophilia, but I would give it serious thought.

I am by no means an expert, but I have read quite a lot over the years so I would be happy to tell you what I know if you have any specific questions.