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.
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
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
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
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
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
Trish
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...
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
Brent
Thanks for the support and well wishes. It is great to know there is someone to talk to that understands. Bless you all.
Brent
Brent
Have an Answer?
You are reading content posted in the Hepatitis Social Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
