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liver transplant receipiant- 03/2010
hello everyone I'm new to the forum.( WAS DX'd WITH HEP NON A NON B 1972)found out in 1994 that it was hep c. tried int/rib in 1998. to no avail Will not go into details of liver failure or the effects on my body ;;;.immune system ,lesions, fatique ,spasms,stiffness in joints ect. due to the effects of the disease itself, not to mention the affects the medication over the years, Notice I said years ! FYI the dr. is still at learning stages when it comes to hep c.. For years as my body deteriated internally MY EXPERIENCE AND KNOWLEDGE came in direct communication with people with HEP.C. there are certain things about living with Hep-C that I've just had to get use to. Three years ago I was in intensive care, was given three months to live,due to stage 4 ,cirrossis and liver cancer . now let's flip the coin. Here I am 3years later, 61 yrs. old, & playing ball with the grand children,climbing trees,being somewhat active and in over all good health. except for the affects of h/c and the anti rejection meds. Still mental and physical fatique,spasms,joint and muscle discomfort and definitely not able to do alot of things that I would like to and am limited to out door activity no more deep sea fishing or on the golf course. My delima at stage 3 fibrosis Dr.s recomending doing the t/x. Is there any one out there who has had a transplant and have been on or completed the treatment??????????? Note; Is it worth it , It depends on who you ask ! Or day of the week it is! Personally I like being able to have the conversation. My new tx. will inclide Riibovarin,Pegitron and a new med., Victrelis. . If you have taken these 3 meds together at some time in your tx. plan, please send me your response to it. Thank you so much!!!
I had a liver transplant three years ago and I elected to attempt treatment using Incivek combined with pegasys and ribavirin. I was not at the point in which I needed to treat (had only minor inflamation and no fibrosis). I was feeling good two years after the transplant and was eager to try one of the new drugs. My doctors were agreeable to my desire to treat but told me it wasn't necessary yet and that newer drugs were coming that had lower side effect issues and higher clearance rates. My decision was based on my experience with waiting for Vitrelis and Incivek to get FDA approval before my transplant. The process seemed to drag on while I got sicker and sicker and eventually ended up needing a life saving transplant. I saw the great results from the new PIs and wanted to treat before my new liver was damaged.
The triple therapy was tough. I ended up needing three transfusions for anemia and I still take Procrit shots to manage my low hematocrit. But, I have been virus free since week 8 of treatment over 7 months ago (I had a viral load of 36 at week four) and I have only 10 more weeks to go on peg/riba. I am glad I made the decision to treat, but will tell you it was tough. Good luck with your decision. Make sure you get all the pros and cons. Lots of people here can tell you the challenges of the triple therapy.
The triple therapy was tough. I ended up needing three transfusions for anemia and I still take Procrit shots to manage my low hematocrit. But, I have been virus free since week 8 of treatment over 7 months ago (I had a viral load of 36 at week four) and I have only 10 more weeks to go on peg/riba. I am glad I made the decision to treat, but will tell you it was tough. Good luck with your decision. Make sure you get all the pros and cons. Lots of people here can tell you the challenges of the triple therapy.
Treatment of hepatitis C post treatment can only be determined by your transplant center. Treatment with triple therapy post transplant is experimental and there is no data available to determine how effective treatment is and what percent of patients can even compete treatment post transplant. All information related to your health now that you are a transplant patient should be gotten for the hepatologist at the transplant center that is going to treat your hepatitis C. Each patient is an individual. Only your transplant center can determine the best treatment for your hepatitis C depending on a total medical assessment.
" Is it worth it "
Are you aware the recurrent hepatitis C is probably already damaging your new liver and that is why they are talking about being treated?
What stage liver disease do your know have?
Are you aware that untreated hepatitis C in post transplant patient will rapidly cause liver damage, cirrhosis and liver failure in many transplant patients within 5-10 years post transplant?
They wouldn't want you to treat if you don't already have some stage of fibrosis a;ready occurring occurring.
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What are the possible consequences of HCV infection in liver transplant recipients?
Approximately 20–30% of HCV-infected patients develop cirrhosis within 5 years after transplantation. In contrast, it takes at least 20 years for HCV infection to progress to cirrhosis in nontransplant patients. Many of
the factors mentioned above may contribute to the accelerated
progression observed in the post-transplantation setting. Moreover, transplant recipients who develop cirrhosis decompensate faster and have a higher 5-year mortality rate than HCV-infected cirrhotic patients who
do not undergo transplantation.
Unfortunately, many transplant recipients who develop cirrhosis are not candidates for retransplantation, and outcomes in patients who do undergo retransplantation are usually not good.
What are the typical long-term outcomes when such cases are managed appropriately?
In patients who achieve SVR in response to antiviral treatment, survival rates should be similar to those of transplant recipients who are not HCV-infected. As more clinicians become comfortable using DAA agents
in the post-transplantation setting, we will likely be able to achieve this goal in many more patients.
---------------------------------------------------------------------------------------------
People who are post transplant have very different issues than the 99% of hepatitis C infected patients who have never had a transplant. Post transplant patients require modifications of their immunosuppressants that are beyond the experience and knowledge of pre-transplant patients and most doctors other then liver transplant doctors. Of course close monitoring and avoidance of rejection caused by treatment is also very important.
If you have any questions regarding treatment after transplant here you should post in the "Liver Transplant Expert Forum" where there is a transplant doctor from The Mount Sinai Medical Center that can answer your questions.
http://www.medhelp.org/forums/Liver-Transplant/show/274
Your best source is always your transplant center and all medical procedure done to you should be rub through them first.
Good luck curing your hepatitis C!
Hector
" Is it worth it "
Are you aware the recurrent hepatitis C is probably already damaging your new liver and that is why they are talking about being treated?
What stage liver disease do your know have?
Are you aware that untreated hepatitis C in post transplant patient will rapidly cause liver damage, cirrhosis and liver failure in many transplant patients within 5-10 years post transplant?
They wouldn't want you to treat if you don't already have some stage of fibrosis a;ready occurring occurring.
---------------------------------------------------------------------------------------
What are the possible consequences of HCV infection in liver transplant recipients?
Approximately 20–30% of HCV-infected patients develop cirrhosis within 5 years after transplantation. In contrast, it takes at least 20 years for HCV infection to progress to cirrhosis in nontransplant patients. Many of
the factors mentioned above may contribute to the accelerated
progression observed in the post-transplantation setting. Moreover, transplant recipients who develop cirrhosis decompensate faster and have a higher 5-year mortality rate than HCV-infected cirrhotic patients who
do not undergo transplantation.
Unfortunately, many transplant recipients who develop cirrhosis are not candidates for retransplantation, and outcomes in patients who do undergo retransplantation are usually not good.
What are the typical long-term outcomes when such cases are managed appropriately?
In patients who achieve SVR in response to antiviral treatment, survival rates should be similar to those of transplant recipients who are not HCV-infected. As more clinicians become comfortable using DAA agents
in the post-transplantation setting, we will likely be able to achieve this goal in many more patients.
---------------------------------------------------------------------------------------------
People who are post transplant have very different issues than the 99% of hepatitis C infected patients who have never had a transplant. Post transplant patients require modifications of their immunosuppressants that are beyond the experience and knowledge of pre-transplant patients and most doctors other then liver transplant doctors. Of course close monitoring and avoidance of rejection caused by treatment is also very important.
If you have any questions regarding treatment after transplant here you should post in the "Liver Transplant Expert Forum" where there is a transplant doctor from The Mount Sinai Medical Center that can answer your questions.
http://www.medhelp.org/forums/Liver-Transplant/show/274
Your best source is always your transplant center and all medical procedure done to you should be rub through them first.
Good luck curing your hepatitis C!
Hector
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