Gordon, you've been really lucky to have 12 good years before hep C made itself known again. In my case, one month after transplant I had the hep C fatigue and my enzymes have been climbing week after week. My viral load was 10 million in early Jan. However, Mayo won't do treatment until the numbers get much higher. When I do have it, it will be the new 3-drug treatment with Telaprevir, which I've heard is a real bear.. I've been dealing with hep C symptoms since '91. I haven't had a chance to really appreciate my new liver and being alive, as I am dragging around and would rather sleep than do anything else. I force myself to get up and do things every day. I've also had post-surgical complications that I'm still dealing with, including a very large hernia. They won't repair it now, as I'm only 3 mos. out from TP; however, at some point they will have to open me up again.
There was also the question of whether I was rejecting or it was just the hep C, so they did a biopsy and determined that it wasn't rejection, but HCV. However, my liver is still clean--no fibrosis.
Most folks think that once one gets a transplant, everything is just hunky-dorie. That might be true in some cases, but not for those with active hep C!
I would want to know why he couldn't have the 3-drug treatment or even the one in trial that eliminates interferon from the mix.
Six months post transplant, my labs jump around. They want to do another biopsy soon (last one was in Jan.), which is not my favorite thing, but that's how Mayo seems to determine the need for treatment. I've had more complications in recent months, necessitating being opened up again to repair an opening that never healed. After that surgery, I ballooned up to 170 (I'm 4'11") and huge water and blood blisters developed around my ankles and feet, along with a large hematoma on my shin, which was lanced and is quite deep and long. Home health is treating it, but it looks like it's going to take months. I understand your frustration.
I know where you are coming from. I had my TX two years ago and am now in stage 4 liver failure due to HCV. they put me on pegasys and rib and i had anemia so bad I was in the hospital for 6 days. I have had 6 transfusions, with no help. I am now off of treatment and the doc says hopefully something new will become avalible. The best time line i have seen is 5 to 10 years i can't waite that long. I'm thankfull for the extra time the transplant has bought me. but i wont go through that again. the worst part was the encephalopathy that was scary. so I pray and leave it in Gods hands. I'm going to enjoy this summer the best I can. Peace and Love to all
OMG, our stories are so very similar! I just had my transplant a little over 2 months ago and I am now diabetic, Ive had stints placed in my bile ducts which caused pancreatits, my bilirubin is high and won't budge so we are now considering Hep C tx. again because it is back with a vengeance. Very very scary! I am a strong woman with tons of hope and faith, love and support, but I am so ready to feel good again and live a relatively normal life with my family. I thing it's the overwhelming fears that get me the most.
Hep C is responsible for the majority of liver transplants in the US.
The good news is the new interferon free meds in clinical trials are proving very successful.
My friend is on the tranpslant list and is in a small trial with these meds ( 7977 and ribaririn)
As a null responder to interferon, but despite having decompensated cirrhosis, he was undetected with the new meds, at week 2 !!
The idea is he will have a transplant within the next couple of months and not have to undergo treatment afterwords.
These new meds are moving quickly towards being the treatment of the future. Kathy, I'd encourage you to speak to your hepatologist about the new orals and see if there are any trials coming up for people who are newly transplanted.
In the meantime, drink lots of coffee, if you can, and hang in there !