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.
No, I wouldn't have gotten a liver when I did if they hadn't suspected cancer. Had they been able to determine that the lesion was not cancerous they would have dropped me way back down the list. I was not offered treatment as an alternative. In 2000 the general consensus was that cirrhotics wouldn't benefit from treatment and, as a rule, they shouldn't treat. 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. Mike
"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. "
That is one of the saddest facts of this disease - people,. even doctors, believing because it took so many years to get to stage 3 that it will take almost as long to get to cirhosis. I wish to God I had known at stage 1 so I could have treated, whipped the disease and maybe luckily have regressed to have no liver damage. As it is now as a stage 3 I will have to pray nothing happens to compound the situation even though I've gotten SVR.
Doctors DONT always give us the right advice unfortunately. We all have to learn how to get second opinions for any situation that arises that we are not 100% positive about. 5 years until the next biopsy - simply LUDICROUS and I am SO SO SORRY that it took this lesson that you didn't deserve to learn that! I hope that "doctor" is now fully aware how BAD this do nothing attitude of his way.
Well WALRUS - thank you for such an important cautionary story. It is a very important lesson for us all to remember - unfortunately more situations are bound to come up in life and I'd hate to ever be so "trusting" of any one individual over my life again.
Debby
That is one of the saddest facts of this disease - people,. even doctors, believing because it took so many years to get to stage 3 that it will take almost as long to get to cirhosis. I wish to God I had known at stage 1 so I could have treated, whipped the disease and maybe luckily have regressed to have no liver damage. As it is now as a stage 3 I will have to pray nothing happens to compound the situation even though I've gotten SVR.
Doctors DONT always give us the right advice unfortunately. We all have to learn how to get second opinions for any situation that arises that we are not 100% positive about. 5 years until the next biopsy - simply LUDICROUS and I am SO SO SORRY that it took this lesson that you didn't deserve to learn that! I hope that "doctor" is now fully aware how BAD this do nothing attitude of his way.
Well WALRUS - thank you for such an important cautionary story. It is a very important lesson for us all to remember - unfortunately more situations are bound to come up in life and I'd hate to ever be so "trusting" of any one individual over my life again.
Debby
After transplant pathology found no cancer in my liver.
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I always forget to ask you this. So in other words, your only reason for transplant was that they thought you had cancer? Or would they still have transplanted you if they were able to bx and find that you didn't have cancer?
So what I am asking is would it have been better (health wise) to keep your liver and go thru tx OR get a new liver and tx even if they knew there was no cancer. Just curious.
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I always forget to ask you this. So in other words, your only reason for transplant was that they thought you had cancer? Or would they still have transplanted you if they were able to bx and find that you didn't have cancer?
So what I am asking is would it have been better (health wise) to keep your liver and go thru tx OR get a new liver and tx even if they knew there was no cancer. Just curious.
Yes, it seems as if we walked in each other's shoes. I don't recall being that upset about the lesion. I just assumed that I wasn't going to get well or get a liver so when they said "lesion" I was pretty numb. I wasn't the least bit scared when I got the call that they had a liver. I figured either I would die or be well. I was so uneducated that I thought transplantation would cure the HCV. I didn't know anything at all about any of this stuff - until the HCV recurred and then I started studying. About 2 days post transplant my surgeon told me not to trust anyone. I said "except you, right?" and he said "not even me". He was speaking the truth and it took me a while to realize just how true it was.
Happy New Year and I wish you the very best Brent.
Mike
Happy New Year and I wish you the very best Brent.
Mike
I was back rereading this post and I see I didn't respond to the last two comments. I think sometimes am pretty brain dead!
Child24Angel: My MELD was 28 when I was transplanted (this was due to the points added because of the HCC diagnosis)
Mike: It didn't sink in the first time I read your comment, but that is an amazing coincidence. Even with the HCC points added, I had to wait six months. If it had really been malignant, I might not have lived that long.
Child24Angel: My MELD was 28 when I was transplanted (this was due to the points added because of the HCC diagnosis)
Mike: It didn't sink in the first time I read your comment, but that is an amazing coincidence. Even with the HCC points added, I had to wait six months. If it had really been malignant, I might not have lived that long.
This seems very coincidental but that is exactly the reason I got transplanted. During a routine scan a lesion was seen on my liver. I got the call while I was at my office. The woman said the word "lesion" and I said "do you mean cancer?". She said that where it was located it could not be biopsied. She told me to get a chest x-ray as soon as possible. I got it the next day and 3 days later she called again and said the x-ray was clear and I would be bumped up the list "big time". I asked what "big time" meant and she said I should have a beeper or cell phone with me at all times. This was around May 23rd and I got my first call that they had a liver Wednesday June 14th. The liver wasn't right for me and the surgeon told that I could wait and that they'd monitor/scan my liver monthly and that he was going to find me the perfect liver. 2 days later I got another call - they found the perfect liver. After transplant pathology found no cancer in my liver. So we were both extremely lucky, it would appear. It's rather strange that we both got our livers that way.
Mike
Mike
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