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.
Kalio did SVR, as a Geno 3, she was told she could tx for 24 weeks. It failed and she jumped back on tx. By this time she was stage 3. I was with her at the fibroscan and saw her liver. She did progress quickly. That doesn't mean all of us do. I think I need another look. Just called my Dr. about my Fibosure test I took a few weeks ago. The stupid lab says they can't give me the results. My Dr. signed I could get them, so now I am calling him when they get back from lunch. Wish I wasn't so fatigued and on top of everything, but I am not. Perhaps I need a new drug.....isn't that a song? lol
Hugs, Linda
Hugs, Linda
Yeah, thats why I tx too. I want it out. Didn't I read that Kalio had progressed quickly too. I know she is svr now (thank God) but I think I recently read where her stages increased rapidly prior to tx?
Wow. Just read this thread and now am totally understanding of why you are against watch and wait. I am afraid of the interferon, as you know. This has opened my eyes to the "stick a fork in me, I am done" approach. All the stories of TP has opened my eyes. My best friend and business partner died of HCV with liver cancer waiting for transplant, about the same time you had one. There is a 2% chance of us getting to the point of cancer, I have read. Maybe that has been updated since I read it.
Geez, I am 1a, stage 1, feel like cr@p and not sure my stage at this moment. Perhaps a new fibroscan would help. Yuck! I sure am glad you all got TP's and that is a great thing. My friend wasn't so lucky. Too bad more people don't donate organs. Elaine, I had no idea Nick had progressed to the list. My heart goes out to you! you are such a special person, I know Nick must be too. Sorry I missed this!
Thanks for all the stories. As a relapser, I need to do something, but not sure when. At the moment I am waiting and watching. I think I need to watch a little better. My UCSF hep Dr, says he doesn't recommend txing now. my husband would probably kill me if I did. I am going to work on these supplement HR recommends and see my Dr. sooner than I planned...did get a fibrosure that I haven't gotten the results for yet..
Thanks and Hugs to you all!
Linda
Geez, I am 1a, stage 1, feel like cr@p and not sure my stage at this moment. Perhaps a new fibroscan would help. Yuck! I sure am glad you all got TP's and that is a great thing. My friend wasn't so lucky. Too bad more people don't donate organs. Elaine, I had no idea Nick had progressed to the list. My heart goes out to you! you are such a special person, I know Nick must be too. Sorry I missed this!
Thanks for all the stories. As a relapser, I need to do something, but not sure when. At the moment I am waiting and watching. I think I need to watch a little better. My UCSF hep Dr, says he doesn't recommend txing now. my husband would probably kill me if I did. I am going to work on these supplement HR recommends and see my Dr. sooner than I planned...did get a fibrosure that I haven't gotten the results for yet..
Thanks and Hugs to you all!
Linda
No joke! It sure makes you realize that with every single doctor you go to it's totally best to check it out for yourself big time. I would have had no idea just HOW important it is and it ticks me off too to say the least.
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Yeah its crazy. Its no wonder alot these old people that live alone die at the hands of some of these doctors. Most grandma's that live alone dont' google or even know what that means. If you asked them they would probably say they google after they brush their teeth. lol
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Yeah its crazy. Its no wonder alot these old people that live alone die at the hands of some of these doctors. Most grandma's that live alone dont' google or even know what that means. If you asked them they would probably say they google after they brush their teeth. lol
"They are the ones who went to medical school for this stuff, why do we have to be continully turning pages or hitting 'google' I should say. "
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No joke! It sure makes you realize that with every single doctor you go to it's totally best to check it out for yourself big time. I would have had no idea just HOW important it is and it ticks me off too to say the least.
I was finally just able to convince my dad that he needed to see a specialist for his cancer - he was just going to his regular old doctor!!!!!!!!!! I said please at least go get a second opinion!!! Of course they were so impressed by the specialist mom and dad were kicking their own butts - and now his cancer is gone so...I lOVED saying "I told you so" in that case!
I wish for every wrong bit of advice - or archaic piece of advice we get we could take the money that THEY got paid back and keep it for ourselves! Honestly my GI was a lovely man but the education which he received from me on current hepC updates...I think he should have deducted and paid me in $$$ for! That would have been Niiiiiiice!!!!!!! ;) hahahaha
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No joke! It sure makes you realize that with every single doctor you go to it's totally best to check it out for yourself big time. I would have had no idea just HOW important it is and it ticks me off too to say the least.
I was finally just able to convince my dad that he needed to see a specialist for his cancer - he was just going to his regular old doctor!!!!!!!!!! I said please at least go get a second opinion!!! Of course they were so impressed by the specialist mom and dad were kicking their own butts - and now his cancer is gone so...I lOVED saying "I told you so" in that case!
I wish for every wrong bit of advice - or archaic piece of advice we get we could take the money that THEY got paid back and keep it for ourselves! Honestly my GI was a lovely man but the education which he received from me on current hepC updates...I think he should have deducted and paid me in $$$ for! That would have been Niiiiiiice!!!!!!! ;) hahahaha
In hindsight I had rather bad medical advice pre-transplant but, like I said, I didn't know anything then so I didn't challenge anyone about anything. I've learned better since then
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It's really ashame or I should say it totally ticks me off that patients have to be so up on this disease in order to feel confident that the doctors are making the right choices or decisions concerning our health and life. We shouldn't have to constantly read 'the latest studies' and whatever else that comes along to insure we are getting the best care. They are the ones who went to medical school for this stuff, why do we have to be continully turning pages or hitting 'google' I should say.
Btw, that fellows website that you gave me - (Tony) - his story is different than mine so not much to compare. The backround colors make it difficult to read too. Thanks anyway.
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It's really ashame or I should say it totally ticks me off that patients have to be so up on this disease in order to feel confident that the doctors are making the right choices or decisions concerning our health and life. We shouldn't have to constantly read 'the latest studies' and whatever else that comes along to insure we are getting the best care. They are the ones who went to medical school for this stuff, why do we have to be continully turning pages or hitting 'google' I should say.
Btw, that fellows website that you gave me - (Tony) - his story is different than mine so not much to compare. The backround colors make it difficult to read too. Thanks anyway.
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