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 didn't read all of the post on this thread yet, but the rate of progression made me jump in now! I had a hitting 50 (years old) physical exam in 1999 including a colonoscopy and the gastro guy didn't find the HCV. 2 years later my wife passed with Ovarian Cancer. I already was a functional alcoholic before she died, but I became a full time drinker after she passed. I was working in Mexico of 2002 when I first began to notice the ascites. Another gastro in St. Louis saw me in June '02. He referred me to a Hep Dr. in St. Louis who in September '02 told me I was stage 3. In March '03 he told me I was ESLD and would need a transplant. That's 6 months folks!!! In April '03 varicies came next. In September '03, yes I put things off, I went to KC for a second opinion. I waited the mandatory 1 year for drinkers before I could get listed. The TP finally came in January '05.
Fortunately the rise in my meld score was a slow steady progression and I made through the mandatory drug and alcohol testing. If you want to roll the dice go to a Casino.
My TP doc barely commented about my alt/ast or my VL at my 6 months post tp appointment. However, at my 1 year appointment he convinced me to tx for the same reasons mikesimon and
others above commented. Genotype, VL & Fibrosis were the scientific reasons, but I also felt emotionally I wanted to finish what I started. The jouney began in March '02 and now 5 and a half years later I am 8 weeks post tx. I was UND at 4 weeks post tx. My next will probably be at 12 weeks. mikesimon is right on about the statistics. The drop out rate for TP naive is lower than us.
If you just EVR and complete tx while <80% compliant you should have a better than 50% chance of SVR.
kcmike
Fortunately the rise in my meld score was a slow steady progression and I made through the mandatory drug and alcohol testing. If you want to roll the dice go to a Casino.
My TP doc barely commented about my alt/ast or my VL at my 6 months post tp appointment. However, at my 1 year appointment he convinced me to tx for the same reasons mikesimon and
others above commented. Genotype, VL & Fibrosis were the scientific reasons, but I also felt emotionally I wanted to finish what I started. The jouney began in March '02 and now 5 and a half years later I am 8 weeks post tx. I was UND at 4 weeks post tx. My next will probably be at 12 weeks. mikesimon is right on about the statistics. The drop out rate for TP naive is lower than us.
If you just EVR and complete tx while <80% compliant you should have a better than 50% chance of SVR.
kcmike
Love you Babe! (I can say that 'cause I am the walrus' wife!! He is one tough cookie and I would know!) I am proud of him for sticking it out with the waiitng for TP, the TP itself, the resurgence of the HCV and now the TX. The last two years have really been the pits...but we are so lucky & blessed. Wish we could post pictures of our great support network. I don't think that w/o them we could do this. I'm glad he found this site. You guys are great.
Ladybug: Thanks for the nice thoughts. My head is getting bigger! I'm just glad to help and get help here. I'll be happy to post progress here and see how others are doing. I'm a little new at posting and don't get a lot of time online. I'm still working and that is taking most of my energies.
Forseegood: Good to hear from another Beatles fan.
Everyone: THANKS SO MUCH for making me feel welcome here. I really look forward to keeping in touch.
Forseegood: Good to hear from another Beatles fan.
Everyone: THANKS SO MUCH for making me feel welcome here. I really look forward to keeping in touch.
I'm sure you realize that all of us are thinking of you and youre wonderful son...
Thanks for sharing your story. I will watch your story to see how you do. I'm glad you found this site, I can't believe you've already had a transplant and are on week 21 of tx!
You sound very smart and warm-hearted, I hope you have the support of family and friends. Treatment is kind of a lonely road. Your story is inspiring to both those who have less adversity to deal with, and to those who are suffering with painful sides.
I admire your spirit and courage.
Bug
You sound very smart and warm-hearted, I hope you have the support of family and friends. Treatment is kind of a lonely road. Your story is inspiring to both those who have less adversity to deal with, and to those who are suffering with painful sides.
I admire your spirit and courage.
Bug
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
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