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.
kcmike: OMG, I totally misunderstood your biopsy question! I am a little foggy and slow, but I get it now. You meant Post Transplant biopsy! Yes, I had a biopsy at around 8 months post TP which confirmed that the rising liver functions were due to HCV inflamation. I can't tell you how awful it makes me feel that this old disease is damaging the perfect, new liver I was given. It's a little like seeing a vintage Jag go through an acid car wash, only much worse.
Mike, Win & others: you seem to have a really good handle on everyone's story. You must be very dedicated to this forum. I appreciate your expertise and willingness to share the same with me and others. Like kcmike says, you're the experts. Thanks :)
- Brent
Mike, Win & others: you seem to have a really good handle on everyone's story. You must be very dedicated to this forum. I appreciate your expertise and willingness to share the same with me and others. Like kcmike says, you're the experts. Thanks :)
- Brent
Forgot to answer your astute question about the biopsy. This is the part of the story I shortened. But here's the longer version; remember you asked ;) ...
My tumor was in the caudate lobe and located right next to the IVC. That is why the surgeons would not attempt to remove it. They didn't even want to biopsy it. At the TP center they recommended an intervention radiologist who could/would attempt this. The tissue sample came back negative, but the docs and surgeons said that they could not be sure the needle was in the right place. They said that the biopsy was the gold standard for identifying malignancy but wasn't as reliable in ruling it out. They did more types of scans (PET, etc.) and even sent images out to some top oncologist in SF. All together there were 3 surgeons, 5 GE docs, and several radiologists who were sure this was HCC in spite of the biopsy. There was one liver doc at the TP clinic that thought it might not be HCC. But nobody could recommend that I wait and see. I agreed that I would be less troubled by a false positive HCC diagnosis than by a false negative one. If it was HCC and it spread, I would be ineligible for the TP (couldn't possibly live with that as a likely result).
Anyway, a lot of people were amazed that the post TP path turned up negative. But this turns out to be a blessing because I got the TP before getting as ill as I would have waiting for my lab MELD to get over 25 (that's about the scores that were TP's in 2006. Plus, I dodged a real bullet for my post TP prognosis by having a clean path on the tumor. In any case, I couldn't have undergone Tx with my old liver at that point anyway. Already stage IV cirhossis.
Now you know about as much about my TP as I do! You probably see why I gave a shorter version originally. My main point for the details at all, had more to do with how my disease progressed from "mild/moderate inflamation" to ESLD between doctor visits. This nullified the opportunity to treat me without TP. I don't really blame the doc. I think that was SOP then: no fibrosis + geno 1 = no Tx.
Tell me how you feel now that you're done with the TP and SVR. That's what I need to hear :)
Best wishes!
- Brent
My tumor was in the caudate lobe and located right next to the IVC. That is why the surgeons would not attempt to remove it. They didn't even want to biopsy it. At the TP center they recommended an intervention radiologist who could/would attempt this. The tissue sample came back negative, but the docs and surgeons said that they could not be sure the needle was in the right place. They said that the biopsy was the gold standard for identifying malignancy but wasn't as reliable in ruling it out. They did more types of scans (PET, etc.) and even sent images out to some top oncologist in SF. All together there were 3 surgeons, 5 GE docs, and several radiologists who were sure this was HCC in spite of the biopsy. There was one liver doc at the TP clinic that thought it might not be HCC. But nobody could recommend that I wait and see. I agreed that I would be less troubled by a false positive HCC diagnosis than by a false negative one. If it was HCC and it spread, I would be ineligible for the TP (couldn't possibly live with that as a likely result).
Anyway, a lot of people were amazed that the post TP path turned up negative. But this turns out to be a blessing because I got the TP before getting as ill as I would have waiting for my lab MELD to get over 25 (that's about the scores that were TP's in 2006. Plus, I dodged a real bullet for my post TP prognosis by having a clean path on the tumor. In any case, I couldn't have undergone Tx with my old liver at that point anyway. Already stage IV cirhossis.
Now you know about as much about my TP as I do! You probably see why I gave a shorter version originally. My main point for the details at all, had more to do with how my disease progressed from "mild/moderate inflamation" to ESLD between doctor visits. This nullified the opportunity to treat me without TP. I don't really blame the doc. I think that was SOP then: no fibrosis + geno 1 = no Tx.
Tell me how you feel now that you're done with the TP and SVR. That's what I need to hear :)
Best wishes!
- Brent
Thanks mike for the positive thoughts of SVR. Yes I believe you did mention you had EVR, but not UND by week 12. Interesting that it came back so fast and hard! My 4 week post tx VL test was a <5 IU's and I just talked today to my TP nurse regarding my next PCR and sensitivity. We decided to go with a <50 as if it's back it will be high. BTW she also told me that 8 weeks post tx alt/ast were 19/23 which I take very positive (drop dead beautiful).
Now that tx is over I find that I post and answer more than when I was in tx! Imagine that. I'll be back to check on everyone and to support others w/TP issues. You multiple tx guys and gals have the best info for the newbies and I'll leave most of that to you pros.
kcmike
Now that tx is over I find that I post and answer more than when I was in tx! Imagine that. I'll be back to check on everyone and to support others w/TP issues. You multiple tx guys and gals have the best info for the newbies and I'll leave most of that to you pros.
kcmike
I am really sorry to hear what you've been through. I avoided much suffering by going to the top of the list with the HCC exception points, so I never got as sick with jaundice, ascites, etc. I am thankful for that. I am not sure I could have handled it.
As for your quick clearance: congrats! I used to think geno 1 never cleared that quickly. I am glad to hear that I stand a 50% chance. That is kind of what I was thinking but didn't know how much to discount because of the TP.
Like you were, I am determined to beat this disease. I think having the second chance with a transplant is a great motivator. I feel like I need the have the determination for two people; one for me and one for my donor.
Thanks for sharing your story. I have a lot going for me in the way of family support and good health generally. Now I can include the folks on this site as well. I feel like I cannot fail!
Thanks,
Brent
As for your quick clearance: congrats! I used to think geno 1 never cleared that quickly. I am glad to hear that I stand a 50% chance. That is kind of what I was thinking but didn't know how much to discount because of the TP.
Like you were, I am determined to beat this disease. I think having the second chance with a transplant is a great motivator. I feel like I need the have the determination for two people; one for me and one for my donor.
Thanks for sharing your story. I have a lot going for me in the way of family support and good health generally. Now I can include the folks on this site as well. I feel like I cannot fail!
Thanks,
Brent
I have often wanted to jump in and "caution" folks regarding being passive towards tx. Yes it took probably 30 years to progress to stage 3 for me, but from stage 3 to Cirhosis may have only taken 6 months. My INR/PT was to high for core needle biopsy so my docs only had US/CT images to go by.
You are very fortunate to be free of the HCC. Did you have a biopsy PT? I did at 1year PT and it was totally unremarkable except mild portal inflammation. Even so my TP team had little difficulty talking me into tx. I certainly did not want to go down the waiting list route again.
Good for you that tx sides sound doable at 21 weeks. My tx was for 48 weeks, gt-1b, and I struggled through everyday of work without missing anytime. I won't say I had my doubts, but I was out of work for a year and a half and was trying to rebuild my resume.
Keep us informed on your progress and stay tuned to this forum. I found this forum around week 16 of tx and gleaned alot of good info to help me make the right decision.
kcmike
You are very fortunate to be free of the HCC. Did you have a biopsy PT? I did at 1year PT and it was totally unremarkable except mild portal inflammation. Even so my TP team had little difficulty talking me into tx. I certainly did not want to go down the waiting list route again.
Good for you that tx sides sound doable at 21 weeks. My tx was for 48 weeks, gt-1b, and I struggled through everyday of work without missing anytime. I won't say I had my doubts, but I was out of work for a year and a half and was trying to rebuild my resume.
Keep us informed on your progress and stay tuned to this forum. I found this forum around week 16 of tx and gleaned alot of good info to help me make the right decision.
kcmike
I am feel so happy that you have good results at 4 weeks post TX. I probably told you this more than once but after my second TX, during which I became undetectable late and stopped too quickly, I relapsed and it showed dramatically only 2.5 weeks after stopping. I went from < 5 IU/ml to 6.85 million IU/ml, and that was the highest VL I have ever had. That was only 2 1/2 weeks after stopping TX so I am very optimistic about you and SVR. I wish you the very best Kcmike. Good luck and please keep us posted.
Mike
Mike
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