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Why should I take the new Hep C treatment program ?
I am going on the transplant wait list which I realize may take a while to actually get a new liver. It has been suggested that I might want to take the new triple treatment to clear up the Hep C before getting the transplant. I wouldn't want to delay the transplant if I am in the middle of the 48 week treatment. With the scarring I have I would still have to get a transplant whether the treatment works or not.
I have had Hep C since 1973, almost 40 years. The transplant liver is generally expected to have a 1/2 life of the old liver's time with Hep C. This would mean that I could possibly go 20 years with the new liver - I will be over 80 years old at that time.
Any suggestions on treatment vs. transplant???
I have had Hep C since 1973, almost 40 years. The transplant liver is generally expected to have a 1/2 life of the old liver's time with Hep C. This would mean that I could possibly go 20 years with the new liver - I will be over 80 years old at that time.
Any suggestions on treatment vs. transplant???
Best Answer
MELD can go up and down all the time. No one can tell what will happen with your MELD. It is totally unpredictable. You say they are transplanting at 22-24 for your blood type, correct. That is amazing! Here it is a MELD of 37 – 40 and higher. Blood type can make a big difference. Your liver could fail tomorrow or 5 years from now. No one can say.
“I wouldn't want to delay the transplant if I am in the middle of the 48 week treatment.”
How could it delay transplant? It can’t. In fact if you have undetectable HCV whether it is week 4 or 48 and you get a transplant you have a good chance of not infecting the donor liver with hepatitis C. You don’t have to have SRV to accomplish that, only be undetectable. I expect to be treated for 4-12 weeks before transplant so I don’t infect my donor liver at the time of transplant. This is a common thing that is done for us HCV patients needing transplant. I will know when I will have my transplant because I will have exception points for liver cancer which will increase my MELD by 3 points every 3 months.
“With the scarring I have I would still have to get a transplant whether the treatment works or not.”
It all depends on how much of your liver is damaged. It is not true that you will have to have a transplant just because you have cirrhosis. More data should be available in the future to show that cirrhosis’s progression can be stopped and some parts of the liver damage can be reversed. I can’t speak of other transplant centers but my own, but here they are willing to treat patients with a MELD score under twenty with the new triple therapy.
Why? Because most patients need to treat their hepatitis C either before or after transplant. Let’s assume you have to have a transplant. Well the choice could be either treat before transplant or after. That is a lot of time that you life when you probably won’t be able to work and be limited in your activities in life. Post transplant your will be trying to not have complications from the transplant and deal with all the new meds you are taking and then to throw 48 weeks of treatment on your new liver is no walk in the park.
“The transplant liver is generally expected to have a 1/2 life of the old liver's time with Hep C. This would mean that I could possibly go 20 years with the new liver - I will be over 80 years old at that time.”
Don’t know where you heard that. If only it were true. Have you read the 3 year, 5 year survival rates for post transplant patients with hepatitis C at your transplant center? It should be available to you. You may want to check them out… Here are the data that orphanhawk mentioned.
20-30% of liver transplant patients with hepatitis C will develop decompensated cirrhosis have their donor liver fail or develop liver cancer within 5 years after transplant. There is also a small group whose livers fail within 1 year.
http://www.medsci.org/v03p0079.htm
“Several studies have shown that as many as 20% of HCV patients undergoing liver transplant may develop cirrhosis within 5 years, with almost 50% developing cirrhosis within a decade. Once patients develop cirrhosis from recurrent HCV, they are at risk for the same complications as other patients including variceal bleeding, ascites and hepatocellular carcinoma. Berenguer and colleagues observed rapid hepatic decompensation in LT recipients with graft cirrhosis due to recurrent HCV.”
“Recent studies looking at large numbers of patients with adequate long-term follow-up have confirmed that patients with HCV undergoing liver transplantation have increased morbidity and mortality and have lower 5 and 10 year survival rates when compared to patients undergoing liver transplantation for other etiologies of cirrhosis”
http://www.standardofcare.com/mwiki/index.php?title=Liver_transplant
“Overall patient survival in patients with Hepatitis C recurrence are 94%, 71% and 63% at 1, 5, and 8 years, respectively.”
And then there is always the case to avoid transplant if at all possible…”15-20% of patients awaiting orthotopic liver transplantation die before an organ is available”.
Best of luck to you!
Hector
“I wouldn't want to delay the transplant if I am in the middle of the 48 week treatment.”
How could it delay transplant? It can’t. In fact if you have undetectable HCV whether it is week 4 or 48 and you get a transplant you have a good chance of not infecting the donor liver with hepatitis C. You don’t have to have SRV to accomplish that, only be undetectable. I expect to be treated for 4-12 weeks before transplant so I don’t infect my donor liver at the time of transplant. This is a common thing that is done for us HCV patients needing transplant. I will know when I will have my transplant because I will have exception points for liver cancer which will increase my MELD by 3 points every 3 months.
“With the scarring I have I would still have to get a transplant whether the treatment works or not.”
It all depends on how much of your liver is damaged. It is not true that you will have to have a transplant just because you have cirrhosis. More data should be available in the future to show that cirrhosis’s progression can be stopped and some parts of the liver damage can be reversed. I can’t speak of other transplant centers but my own, but here they are willing to treat patients with a MELD score under twenty with the new triple therapy.
Why? Because most patients need to treat their hepatitis C either before or after transplant. Let’s assume you have to have a transplant. Well the choice could be either treat before transplant or after. That is a lot of time that you life when you probably won’t be able to work and be limited in your activities in life. Post transplant your will be trying to not have complications from the transplant and deal with all the new meds you are taking and then to throw 48 weeks of treatment on your new liver is no walk in the park.
“The transplant liver is generally expected to have a 1/2 life of the old liver's time with Hep C. This would mean that I could possibly go 20 years with the new liver - I will be over 80 years old at that time.”
Don’t know where you heard that. If only it were true. Have you read the 3 year, 5 year survival rates for post transplant patients with hepatitis C at your transplant center? It should be available to you. You may want to check them out… Here are the data that orphanhawk mentioned.
20-30% of liver transplant patients with hepatitis C will develop decompensated cirrhosis have their donor liver fail or develop liver cancer within 5 years after transplant. There is also a small group whose livers fail within 1 year.
http://www.medsci.org/v03p0079.htm
“Several studies have shown that as many as 20% of HCV patients undergoing liver transplant may develop cirrhosis within 5 years, with almost 50% developing cirrhosis within a decade. Once patients develop cirrhosis from recurrent HCV, they are at risk for the same complications as other patients including variceal bleeding, ascites and hepatocellular carcinoma. Berenguer and colleagues observed rapid hepatic decompensation in LT recipients with graft cirrhosis due to recurrent HCV.”
“Recent studies looking at large numbers of patients with adequate long-term follow-up have confirmed that patients with HCV undergoing liver transplantation have increased morbidity and mortality and have lower 5 and 10 year survival rates when compared to patients undergoing liver transplantation for other etiologies of cirrhosis”
http://www.standardofcare.com/mwiki/index.php?title=Liver_transplant
“Overall patient survival in patients with Hepatitis C recurrence are 94%, 71% and 63% at 1, 5, and 8 years, respectively.”
And then there is always the case to avoid transplant if at all possible…”15-20% of patients awaiting orthotopic liver transplantation die before an organ is available”.
Best of luck to you!
Hector
That is a great website. It covers just about anything you might want to know about Hep C
Thanks and God Bless you in your battle with the dragon.
Thanks and God Bless you in your battle with the dragon.
I'd guess I had hep C for 30+ years prior to my diagnosis of hcv and decompensated cirrhosis in late 2005. Up until my belly started to swell from ascites, I was walking up mountains, swimming, eating well and thought the symptoms which began concerning me,( mostly fatigue) were all related to menopause.
When I got over my denial and finally began tx in 2007, my response was slow. Tx was difficult and I relapsed.
My heptalogist says he has some patients who have not had problems with the recurrence of hep C even after 20years.
Its anyone's guess how you'll respond.
I suggest this link:
http://www.hcvadvocate.org/hcsp/articles/shaw-stiffel-1.html
Good luck and feel free to ask me anything.
OH
When I got over my denial and finally began tx in 2007, my response was slow. Tx was difficult and I relapsed.
My heptalogist says he has some patients who have not had problems with the recurrence of hep C even after 20years.
Its anyone's guess how you'll respond.
I suggest this link:
http://www.hcvadvocate.org/hcsp/articles/shaw-stiffel-1.html
Good luck and feel free to ask me anything.
OH
If you can see my replies to the other forum participants I think you will see the answer to your questions. Thanks for your input.
Yes, the 20 year figure is with Hep C still active in your blood. As far as whether or not I'm committed to ridding myself of Hep C you will notice in my reply to orphanedhawk that I have already done 2 treatment programs and have been meeting with my liver doctors since 2001 and doing all the recommended changes to diet (low carb, low sodium, low protein). At the assessment all of the various consultants were pleased with my adherence to treatment so I don't think there will be a problem with my attitude and commitment to the program.
I did treatment with interferon in 1993 but was not responsive after 12 weeks so tx was stopped. In 2003 I took part in the peginterferon & ribavaran (not sure of the spelling on these drugs) I went 48 weeks and was virus free at that point however within 4 weeks my viral count was 5x what it had been before treatment began. My MELD was 12 in March of this year, went up to 16 at the first of October and at the end of the month I was 17. I just returned from the assessment for getting on the transplant waiting list. At UAB (Birmingham, AL) they have been getting people in for transplant at MELD 22-24. You indicate that you are already going to stage 2 after only 2 years but how long did you have Hep C before reaching stage 4?
A new liver will get re-infected and progress to cirrhosis more quickly than your own liver. It is best if possible to clear the virus before you are transplanted. What is your MELD score? if it is low you may be waiting years for a new liver. That's why I'm treating now, while I'm on the wait list. My MELD hs been 9-12 for three years. It could be a very long time before I have any priority for a transplant.
Getting a new liver doesn't get rid of HCV. Is that 20 year estimate take into account the fact that you'll still have HCV? Will the people that decide who gets a liver look more favorably on someone who is treating and trying to rid themselves of HCV ?
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Condoms are the most effective way to prevent HIV and STDs.
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Doing treatment after a transplant is complicated by the immune suppression meds and the fact that hep C treatment can instigate rejection of the new organ.
Generally treatment for hep C is more complicated with cirrhosis.
If you trust your doctor and they really think you have a chance of clearing the virus prior to the transplant, then I'd suggest going for it. And are you sure you'd have to do 48 weeks? It could be less.
BTW: I had a related live liver transplant in April 2009. A biopsy in August showed fibrosis of 1 bridging to 2.
I began hep C treatment in early October.
I'm doing well but I'm not average.