post liver transplant still hep c positive need to stop the virus

I am post tx with hep c positive. After 2 years my biopsy came back stage 2-3 grade -2. periportal fibrosis Im already half way on my way to needing another liver. The drs never treated me with interferon and ribovirin due to deppression and anemia. I feel this was a mistake. cyclosporine eating up kidneys (1.6 creatine), (36 bun), 48gfr). Is there anybody who is in my shoes and can recommend how I should proceed. Also what is your opinion about going on a trial for post transplant hep c treated with teplavir,interferon. ribovirin. Help!!!!!!!! Im losing it.

Views: 39

Comment

You need to be a member of TransplantCafe.com - The Gift of eLife! to add comments!

Join TransplantCafe.com - The Gift of eLife!

Comment by Bill S. on August 3, 2011 at 3:25am

 Hep C is for some of us a lifetime sentence. I was transplanted 3/22/2005 and the virus was there immediately post tx. I tried the ribo last year with no response. I'm now stage 4 CKD and will probably need dialisis at some point. But you know what? God is good, I've had 6 1/2 years post tx and I'm praising Him for it.

 

Comment by Tom Russell on August 2, 2011 at 8:50pm

Hi.

 I'm 20 months out. I was at stage 2 six months out. My hep c had developed into cancer so after my transplant I was on an experimental cancer drug. I was scheduled to start the peg interferon stuff at one year but on my mri there was a spot so they decided not to go ahead with it. All I can tell you is what I've been told. No one I know of knows of any trails for post transplant using the new telaprevir. I would do the regular chemo again if I had the chance. They use lighter doses than they used too. Best of luck to you, Tom

Comment by A. Front on August 2, 2011 at 8:15pm

You might want to look into doing the new current treatment for hep C which is proving more successful.

I'd also suggest you post your question on the medhelp.org web site under hep C.

There are a lot of knowledgeable people there who might be better able to help you.

Good luck.

Comment by Carlos on August 2, 2011 at 2:13pm
Get a 2nd opinion or change doctors. Like bellybuttons, all institutions are collecting lint so they can publish according to their research protocol.  Perhaps someone decided you should be a control. You are ultimately responsible for your own survival.

Photos

Loading…
  • Add Photos
  • View All

Latest Activity

Jeff Clardy posted a discussion

Surgery after transplant

I recently injured my hand and now have to have surgery on it to repair it. They are going to be putting me out for the surgery. Now grant it, I, on a regular basis go to my transplant center for different procedures(ie;allomap, biopsies, heart caths, etc) and feel completely at ease in doing so, it has been 4.5 years since my heart transplant, Yet I have found myself with a lot of anxiety going into this surgery, one that they are putting me under, two, it is not at my transplant center but at another hospital. It is really weird that i seem to have more anxiety concerning this surgery then I did about my transplant. The faith I have been granted affords me to have confidence in my eternal destiny to be with Christ and that is what/and has guided me through my entire transplant journey. Can anybody shed some light on their experience they have had with other surgeries following transplant. With a grateful heart, JeffSee More
yesterday
Karen Harrill replied to Phil Keyes's discussion Post transplant blues
"Hi Phil, Before transplant I had hepatic encephalopathy which my gastroenterologists treated with medication. My reflexes were slow and my judgement was often faulty. Until the fall before my following Spring transplant these episodes were few. They…"
yesterday
Karen Harrill replied to Bornali's discussion In distress ..may be just need to hang on in the group Acute Liver Failure Transplants
"Hi there! I notice people are not that active on this page. I had acute liver failure, had a transplant in 2011. I take 3mg of Prograf only. I also, on the advice of my Mayo Clinic transplant surgeons take the vitamins Calcium, E and magnesium. I…"
yesterday
Karen Harrill added a discussion to the group Acute Liver Failure Transplants
Thumbnail

My Acute Liver Failure was the result of Hepatitis C contracted during an emergency C-section in1978!

I lived with stage 4 (end stage) liver disease for 15 years. The fall of 2010 was the beginning of a rapid decline. I received a transplant in May of 2011. As you know a transplant gives you a new life but does not cure the hepatitis C, it begins its damage of your new liver immediately. Thanks to the incredible staff of the Mayo Clinic Liver Department and new drugs Solvaldi and Olysio I have been virus free for over 5 months and hope that my 6 month blood test will be still be negative. Interferon and ribovarin would show no virus and then a month or so it would rear it's ugly head. I had no side effects from the two new drugs. These drugs are very very expensive but I was fortunate that Mayo knew where to go for help with these two drugs whose combined costs is $58,000 per month for 3 months. $174,000.
yesterday
Karen Harrill joined TransplantCafe.com's group
Thumbnail

Acute Liver Failure Transplants

A group for those of us who had a liver transplant due to acute / fulminate liver failure. Here we can discuss our experience with this unexpected form of organ transplant including psychologically, physically and all else that goes with it.
yesterday
Profile IconKaren Harrill, Parent of B and Ali Barton joined TransplantCafe.com - The Gift of eLife!
Tuesday
Lili Feldman commented on Lili Feldman's group The Funny Bone
"Makes sense to me. Good one David."
Tuesday
Ali Barton and Karen Weddick are now friends
Tuesday
Ali Barton updated their profile
Monday
Lloyd Hopes liked TransplantCafe.com's group Share Your Transplant Story
Monday
David Goodman commented on Lili Feldman's group The Funny Bone
"At a local bar in downtown St Paul, the owner and bartender, was so sure that he was the strongest man around, that he offered a standing $1000 bet.  The bartender would squeeze a lemon until all the juice ran into a glass, and then hand the…"
Monday
Caring 4 Carrie posted a status
"This is Mr. Ben Boyd. He's been a kidney support for our Cause. However, he was injured and seeking help. http://www.gofundme.com/e1wtg8"
Monday
Caring 4 Carrie posted a blog post

How Does The Kidney Filter The Body?

According to Yahoo, the kidneys perform their life-sustaining job of filtering and returning to the bloodstream about 200 quarts of fluid every 24 hours. About two quarts are removed from the body in the form of urine, and about 198 quarts are recovered. The urine we excrete has been stored in the bladder for anywhere from 1 to 8 hours. See More
Monday
Linda Desi shared a profile on Facebook
Sep 10
Lloyd Hopes joined Sara Castro's group
Thumbnail

Heart Transplants

Heart Recipients can get to know one another. Discuss medication, issues, blessings, concerns, etc.
Sep 10
Lloyd Hopes joined TransplantCafe.com's group
Thumbnail

Latest Transplant News From Around The World

View the latest transplant news videos added to the internet and find links to the latest news stories!
Sep 10

quick links!

 follow transplant cafe:

Find us on Facebook Follow us on Twitter Subscribe to TransplantCafe

Meet Members by Transplant Type

Heart Kidney
Liver Single Lung
Double Lung Pancreas
Intestinal Bone Marrow
Tissue Kidney / Pancreas
Other Transplant

Badge

Loading…

© 2014   Created by TransplantCafe.com.

Badges  |  Report an Issue  |  Terms of Service