Discussions By Condition: Liver conditions

Was it meant to be?

Posted In: Liver conditions 1 Replies
  • Posted By: krivera7476
  • March 15, 2007
  • 01:36 AM

Hello and god bless you all,

I would like some information and support with my dads case. My dad was diagnosed with hepatitis c and cirrhosis of the liver in 1995. He was never given treatment for his condition and as the years passed his health declined. He was in and out of the hospital several times a year. My dad was not placed on the transplant list until 2001, the year he passed away. His death has been extremely difficult for me and my family to deal with and I still grieve for my dad. In my heart I feel that he has been stolen from us and that more could have been done. I don't know if I am just still in denial and having a hard time accepting his death. My dad was only 53 and to me his was still young. My dad was a Vietnam Veteran and I don't understand why he didn't get any treatment from VA. I really need to know if there is a time frame for a patient to be put on the transplant list. I've read in other web sites that it should be done immediately but in my dads case it was not. I apologize for throwing my issue at you but I need answers so I can move on with my live and accept his death if there was nothing that could be done. I'll appreciate any information or support you can provide.


Thanks,

Kim

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  • Hi Kim, I am sorry about the loss of your father. My MIL was diagnosed with Hep C around '94. She ended up dying in 2001. I know...same timeframe as yours. She never underwent any treatment. They think she conracted the virus when she had her spleen removed 20 years prior to dx. They said she was too far advanced (even in the beginning) to do the ribavarin or interferon therapy. I think that was a big mistake. I tested (I do psych testing) a Dr. once that actually did the interferon and got the virus out of his system. But back to my MIL, she also decided not to do any clinical trials. I tried to convince her that she didn't have anything to lose by trying the interferon or ribavarin. She did add Milk Thistle and stopped drinking alcohol. I don't think she believed she would get sick and die. Or, we sometimes now think she did want to die. She started getting ascites about 8 months before she died and went into the hospital for her last 5 weeks of life. Apparently, she did not get on the list until she was admitted into the hospital due to neuropathy (high ammonia levels in the blood cause extreme confusion, etc.). There was some reason the insurance company would not put her on the list prior to that. We never got a clear answer. My personal feeling is that you don't get on the list unless you are young and "deemed worthy" somehow. Good livers are hard to come by, I guess. Obviously, I have some anger over her death still. The teams of Dr.'s that saw her (Presby in Pgh.) disagreed over her path. She eventually got an infection/abcess from a belly tap. They took her off the transplant list for about a week out of the 3 weeks she was on due to the infection caused by the tap. One liver "came in" when she got back on the list, but they said it wasn't good enough to use because it was a fatty liver. Ironically, I was just diagnosed with a fatty liver and that is why I am looking at this forum. I guess the Dr.'s don't want to go through all of the work to use a fatty liver, but she died anyway short of their trying. I am pretty good at getting to the point with Dr.'s, but my FIL...he was out of his element in a hospital. He never went to any appointments with her until it was obvious she couldn't drive herself anymore. Stupid SOB. (he's not a bad person, just self absorbed and a workaholic) I somewhat blame him for her death, too, because if he went with her to appointments, he would have or should have had the sense to get her on a transplant list much sooner than she did. I feel robbed as well. I was pregnant with her first grandchild when she died and I know she would have been a great help to me. We had a lawyer look into malpractice and they said that "yes" ther might have been some but it would be very difficult to prove and not"worth" the expense or pain it would bring up. The problem is, even if lots of people made a big stink, there just aren't enough livers to go around as more and more people are needing liver transplants. I do know there is a liver filtering machine in the works much like a kidney dialysis machine....someday. The Dr.'s recommended that my MIL's children be tested for hemochromotosis. High iron levels that can affect your liver. Please have yours tested. I am sorry for your loss as I am sorry for mine. V.
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