Aa
HCV Transplant
Anyone with transplant doing Tx? I am new to this forum.
I was diagnosed with HCV genotype 1a in 1999. After other tests and a biopsy I was told that there was only mild to moderate inflamation and that I would proably die of old age with this virus. I was told to have my liver panel tested yearly and to return for another biopsy in about 5 years. Five years later, my biopsy/blood results showed that my liver was now in end-stage cirhosis and I could not be treated. But the bad news was that the AFP levels indicated HCC. Sure enough, subsequent MRI and CAT indicated a tumor. To shorten the story, the tumor was inoperable but small enough that I landed on the transplant list with a high MELD score.
I offer this as a cautionary tale for anyone who has the disease but doesn't show much disease progression and is thinking of not needing Tx.. Apparently after being under control for decades (I most likely got the disease around 1970), the disease can suddenly progress very rapidly.
In an ironic twist, post txplnt pathology showed no malignancy in the tumor! Good news is I don't have to be too concerned about HCC having spread.
I am a year post-transplant now and having problem with HCV resurgence and am in the 21st week of Pegasys and Ribavirin. No RVR but achieved EVR (but not UND). I am in excellent health other than being immunosupressed and having HCV.
Anyone comment on what chance I have for SVR? I am praying for UND at 24 weeks.
I was diagnosed with HCV genotype 1a in 1999. After other tests and a biopsy I was told that there was only mild to moderate inflamation and that I would proably die of old age with this virus. I was told to have my liver panel tested yearly and to return for another biopsy in about 5 years. Five years later, my biopsy/blood results showed that my liver was now in end-stage cirhosis and I could not be treated. But the bad news was that the AFP levels indicated HCC. Sure enough, subsequent MRI and CAT indicated a tumor. To shorten the story, the tumor was inoperable but small enough that I landed on the transplant list with a high MELD score.
I offer this as a cautionary tale for anyone who has the disease but doesn't show much disease progression and is thinking of not needing Tx.. Apparently after being under control for decades (I most likely got the disease around 1970), the disease can suddenly progress very rapidly.
In an ironic twist, post txplnt pathology showed no malignancy in the tumor! Good news is I don't have to be too concerned about HCC having spread.
I am a year post-transplant now and having problem with HCV resurgence and am in the 21st week of Pegasys and Ribavirin. No RVR but achieved EVR (but not UND). I am in excellent health other than being immunosupressed and having HCV.
Anyone comment on what chance I have for SVR? I am praying for UND at 24 weeks.
Wow! I am blown away by the comments here. I didn't think anyone was still reading this post. So many of your comments mimic my own feelings. Especially the part about "..they're the ones who went to medical school ..." That is totally how I have felt throughout this experience. Thanks for the support Mike, MyOwn, sfbaygirl, nygirl, Foreseegood.
Child24Angel - best of luck to you and Nick. Hollerback if there is anything I can do to help.
Mike - looks like you and I got much the same advice. I did the same thing when I was advised not to treat. Wish I had the chance to do that over and get more opinions. I guess we both learned a lesson the hard way. Your surgeon nailed it though, "Don't trust anyone ..". Sounds like you were on the TP track before you found out about the lesion. In my case, it was all at the same time. Best wishes to you.
It is a sobering statistic that about 10% of those on the transplant waiting list die waiting every year. This is predicted to get worse in the future. Anything to raise awareness for organ donation is desperately needed. Many do not become donors because of ignorance or superstition. It is a shame, because donation really saves lives.
Child24Angel - best of luck to you and Nick. Hollerback if there is anything I can do to help.
Mike - looks like you and I got much the same advice. I did the same thing when I was advised not to treat. Wish I had the chance to do that over and get more opinions. I guess we both learned a lesson the hard way. Your surgeon nailed it though, "Don't trust anyone ..". Sounds like you were on the TP track before you found out about the lesion. In my case, it was all at the same time. Best wishes to you.
It is a sobering statistic that about 10% of those on the transplant waiting list die waiting every year. This is predicted to get worse in the future. Anything to raise awareness for organ donation is desperately needed. Many do not become donors because of ignorance or superstition. It is a shame, because donation really saves lives.
here's hoping you get your undie as well...youre kicking them down for sure! the very best to you!
Glad to hear you are post TP. I was speaking with my hepatogist about maintanence drugs a few weeks ago. After the AASLD conf in Boston he claims that they are not a good way to go. Dunno all of your situation, but I would ask or check this out yourself! best wishes to you!
Congrats on your TP. I will be three years post tp this month. My vl was sky high after the surgery, no help to the erourmous amount ot steroids I was given. Took SOC 4 months post and achceived normal enymes and vl < 615. I then had riboviran induced anemia requiring blood transfusion even on a dose of only 200/day. The enymes and VL stayed low after stopping treating for 4 months and then the virus began to show up again. I am now on a maintenance dose of Peg-intron 30mcg/week and no riba. Ensmyes are rising and vl is too. Not sure what the next step will be.
Being post TP is a life time of meds and labs. Please stay on course and know that it is all worth it. I so appreciate each day
Being post TP is a life time of meds and labs. Please stay on course and know that it is all worth it. I so appreciate each day
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