HCV Transplant

[IAmTheWalrus]

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.

[IAmTheWalrus]

My thoughts and prayers will be with you and Nick. I wish I could do something to help. Looks like you have a lot of support here. Hope you'll add me to the list of people that care.

Brent

[Forseegood]

as a Beatlemaniac from way back, sure do love your name...just hearty congrats that you are on your way, and best of luck with this...though I do think your doctor was remiss in telling  you not to get another biopsy for another 5 years, to me that's far too long to wait another biopsy...anyway, just wishing you the best of luck with this...

[Trish77]

Thank you for sharing your cautionary tale. That resonated with me very much. I fervently hope you achieve SVR this time around.  Best wishes to you.

Trish

[wyntre9]

Elaine,

I just don't know how to tell you how very sorry I am that there hasn't yet been a solution for Nick but there will be.  I just feel it.  I have been reading more about the new drugs and they will be available within a couple of years.  Medicine is advancing so quickly that I'm sure something will  help Nick very soon.

Even the recent news about stem cell breakthroughs has to give you hope.

It must be so hard on you to see your strong young son suffer as he does but that he is young is in his favor for eventually responding to a treatment that will cure him.

Don't give up on him or yourself, Elaine.

wyn

[IAmTheWalrus]

I have geno 1A. I had seen a few posts about waiting or treating. I couldn't help think that if I had treated when I was diagnosed, it could have saved me a lot of trauma of a transplant. The doc said that the disease almost never progresses as fast and suddenly as mine did. But it did. I think docs would watch it a little closer today.

As far as treating after disease progresses, I also have read that Peg/Riba tx can slow or reverse some disease (fibrosis) and that that is now a consideration for tx even if VR is not the goal.

Elaine: Are you listed for TP? I think being on the list was harder than the actual TP. It is a lot of stress. I hope you have people you can depend upon. FWIW, I felt pretty good post TP until the HCV reared in an agressive way. Best wishes to you also.

Thanks all,
Brent

[mikesimon]

Response to treatment can change after transplant - responders can become non responders and non responders can become responders. I seem to recall sending you that article but if not tell me and I will dig it up for you. No, it is not easy but, when I treated post transplant treatment was not standard protocol and there was more concern about the possibility of triggering organ rejection with TX so doctors approached this with extreme caution. Though rejection can be an issue my understanding is that it is not as common as was formerly suspected. Bone marrow suppression is an issue and that could possibly explain my surgeon's reluctance to treat me with full doses of ribavirin. This was in 2000 and within 2 months of my transplant and that was definitely not standard protocol for transplant recipients. I believe that had I treated with full dose ribavirin and Pegasys the second time (at the time ofvmy first TX Peg was not yet available so I treated with regular interferon and I injected 3 million units thrice weekly) I would have achieved SVR and I think that might have eventuated with less than 73 weeks of treatment. It was my decision to extend my treatment and my surgeon suggested I stop sooner than I did and perhaps I could have and still achieved the same result. The point I am trying to make is that my experience should only be interpreted as evidence that type1 post transplants with a relatively high VL (6.85 million after relapse and 3.5 million at the start of my 3rd TX) can achieve SVR. My treatment length and the number of times I treated are tied to my particular circumstances and should not be assumed to be applicable to other transplant recipients. If I were you and I was convinced that a liver transplant would provide Nick with the best opportunity for a good life I would not consume myself with worry about post transplant treatment. You and he will cross that bridge when you get to it. And as my Mother always told me: Don't borrow trouble Elaine - well, she called me Mike but the message is the same. I wholeheartedly believe that we have to be aggressive and extremely optimistic when we are faced with something like this. I see absolutely no downside to optimism Elaine. After all if I did it it cannot be that hard to do. Another thing my Mother always said to me was " Son, look on the bright side. Good luck, Mike