Turned down for a transplant due to liver ... what next?

[misslynette]

I am heartbroken. We finally went for the intake appointment at the transplant center. My husband couldn't be evaluated at our home hospital because he's had some liver damage as a result of Hepatitis C (from a transfusion in '81, cured since 2002).

They weren't able to get any blood last week because he's had his arms all carved up trying to make a fistula (another @#%@#% story) ... so I called today to tell them the nephrologist here had okayed using the chest catheter as long as a dialysis tech or nurse did the blood draw.

Long pause .... "oh, he won't need any blood work." Silence. I thought WTH? and then it dawned on me. "He doesn't qualify?"

No, he doesn't qualify. He has some liver issues, but not enough to qualify him for a transplant. Because of all the drugs after, they feel like his liver wouldn't withstand the meds and would fail after kidney surgery.

This is the first time he hasn't been sick ENOUGH for something. And it kills me. He's been so happy since we came back from the transplant clinic last week.

Has anyone experienced this? Is there any point in trying to get a complete liver workup? He's never had a liver biopsy or any of that. Maybe it's not so bad?

Did I say I was heartbroken? OMG. So, so sad 

[shorty590000]

So sorry to hear this... this is really hitting home with me right now as well... and I never even considered this before.. but i have Hep C as well... they have no idea how much damage has been done either.. the virus is still in my body and they willl not treat it with interferon cause they save ESRD contradicts the medication to treat the Hep. C... so basically, what I am looking at is my liver cannot be cured cause of the kidney failure... and it is gonna be even harder to get a kidney transplant cause of the presence of this virus.. wow,, I am truly thankful someone brought this to my attention to this.. I am still so new to all this..

[big777bill]

 I had a liver transplant ON 3/22/2005 BECAUSE OF DAMAGE DONE BY HEP-C. The prograf that I was given as an anti-rejection med damaged my kidneys to the point of where I now am stage 4 CKD. Had a fistula done on 11/17/2011 which got an infection in it and I was in the hospital for 5 days. I'm taking antibiotics at home now through a PICC line. The transplant dept was in charge of my case while in the hospital. When I went for my 1st visit after my release I thought I'd ask them about the possiblity of a kidney transplant. They told my I was ineligable because the hep-c is damaging my liver again and I have a lot of fibrosis now and possibly cirrohsis again. Hep-C sucks!!

[misslynette]

I'm sorry you're both having to deal with this. The thing I hate is that this rejection just came out of the blue. No one gave any indication that he wouldn't be eligible, just that we had to go to a different hospital because of possible liver involvement.

But no one's every really tested his liver. His cirrhosis was diagnosed visually in 1999 while undergoing gallbladder surgery. I have a hard time believing his liver's that bad, but maybe it is. And I guess the kidney transplant and the drugs would push him over the edge. So they say.

Not bad enough for a liver transplant, so no kidney. Can't get one organ or the other because the new one will blow out the old one. Sucks, so sorry folks.

[Lovebelle]

Im so sorry to hear this! Are there any other hospitals that your husband can perhaps be evaluated with. I only ask because different hospitals view things differently. I know a woman who was accepted on the list for a local hospital and was practically on the OR table for a kidney when suddenly they had concerns with her heart work up (She was cleared by cardiology and why this never came up years prior is beyond my understanding). They cancelled transplant and following week removed her from the list due to Cardiac risk. She went to another hospital and they disagreed with prior hospitals assessment and listed her. Good Luck with everything and hopefully things can work out for him.

[rsudock]

I have liver damage from the type of kidney disease i have. My docs have always evaluated me for liver transplants along with the kidneys. Go get evaulated somewhere else!

Xo,
R