Replies to This Discussion

Permalink Reply by Tom Russell on March 10, 2012 at 9:04pm

Hi Terry. Mine started 7 months out. A year after TX I was in stage 2. That was a year and 3 months ago. Did you have any tumors pre transplant? Tom

Permalink Reply by Penny on March 10, 2012 at 9:17pm

I started treatment for Hep C 11 months after transplant.  My doctor told me that my new liver would only last 2 years without treatment.  I only had inflammation in my new liver when I started treatment.

Permalink Reply by Jim Frushour on March 12, 2012 at 6:16pm

I showed the virus at 6 months.  Currently on the standard protocol of Interferon and ribo.  That's really improved all the liver numbers, but those are the same things that happened in all the various test scenarios I was involved in prior to transplant.  At some point, my doctor is looking at adding Incivek.  That's a little scary as that's not approved therapy and I doubt insurance will cover it and I'm already up to my eyeballs in co-pays

Permalink Reply by A. Front on March 15, 2012 at 5:26pm

Yes, it  happens.

I know of one woman who needed another transplant within one year.

If it helps, my tp was in April 2009. I began interferon treatment in October and take my last shot tonight.

I've been undetected since week 4.

The idea of being hep C free is, well, the most freeing idea !

Good luck.

Permalink Reply by Richard John Deione on April 28, 2012 at 5:58pm

I've heard of it attacking within 90 days. That's pretty normal in Los Angeles

Permalink Reply by David Goodman on April 29, 2012 at 9:37am

My transplant docs told me it's common for Hep C to attack quickly after a transplant. That's because your body is weakened from the operation, plus they're still figuring out the level of anti rejection meds. I was also told that if they knew I was about to get a liver ahead of time, interferon might be used before to help protect the new organ right from the get go. In my case, it was sudden, but a year later my viral load began climbing. I recently finished 14 months of interferon/ribavirin and have had a negative viral load for 6 months.

Permalink Reply by terry hunt on May 8, 2012 at 6:04pm

I had to stop treatment due to anemia. i had 6 transfusions and two days later my numbers would be back down. 2 years sonds like a good deal right now. I'm just not looking forward to all the symtoms

Permalink Reply by Gordon on October 13, 2012 at 1:43pm

Hi,

 I found out last week that I will be on Interferon in about 2 weeks, I had my liver transplant 14 years ago, would you please keep me posted on how things are going for you? I wish you all the best!

                                                                            Thanks Gordon

 

Permalink Reply by David Goodman on October 13, 2012 at 7:29pm

Yes. When you have a liver transplant it's not uncommon for the disease to come back when you're weakened after major surgery. I was fortunate to not have my viral load start rising until a year after the transplant. I then had interferon/ribavirin treatment for 15 months and have now been undetectable for 12 months. Prior to my transplant my hepatologist said they might start me on the interferon/ribavirin before that. My MELD score suddenly jumped 6 points in a week and a few days later, got the "call." I was so weak at that point, I'm glad it didn't happen. And, I'm glad that my Hep C didn't jump up right after the transplant, as I was very weak then.

Permalink Reply by Jim Frushour on October 14, 2012 at 7:38am

Update - from my March posting.  I did try the three drug cocktail therapy.  Doctor prescribed Incivek (the co pay fear was unfounded) and the manufacturer picked up the entire copay!  So, I was taking interferon, rib and Incivek in combination for 8 weeks.  The total time the Incivek therapy runs is 12 weeks.  Showed progress for 6 weeks, but when the Incivek doesn't work it's almost like it pumps up the viral load which my doctor told me was a possibility.  Went through the anemia using Procrit, which hellped a lot, but kinda pricey.  We stopped all that and now I'm just taking the anltrejection drugs and ribavirin to try and control the Hep C.  At the time they gave me the Incivek it was an "off label" prescription but I understand that there are clinical trials starting up to do studies with post transplant patients who have Hep C.  My personal experience with clinical studies (phase 2 always) was nothing but good, although we never killed the virus.  The meds were free, the doctor / testing care was free.  Now that I've had a transplant and am paying for copays for some of these meds, I can really appreciate the FREE part.

Permalink Reply by terry hunt on October 14, 2012 at 1:33pm

well had biopsy done last month I am now in end stage. I'm trying to get back on the transplant list but I'm not sure I want to go through that again

Permalink Reply by barbara Perry on February 11, 2013 at 7:42pm

Haven't posted for a while . I had my TX over 3 years ago. I was hospitalized 4 times post op but had 1 1/2 good years , at one time actually was HCV free. For the last several months I have had fluctuating enzymes, some higher than I ever had pre transplant. Prograf levels also went up so now Im down to 0.5 mg 5 days out of 7. Was on interferon pre transplant 3 times, each time stopped responding months into it with resulting soar and rebounding of virus/? mutation or whatever.

I have been waiting for 6 years for DAA's to be approved(without interferon) and they now look extremely promising for us. Yet the pharmaceutical co's are not doing their part in doing whats right,  their profits apparently coming before our lives.

Going for a biopsy on Wed.

Will hopefully know how far the HCV has affected my new liver and prayerfully will have time to wait this out so I can have a chance of being HCV free with these new meds. One combination has been extremely  effective up to like 94% I believe for type 1a like me with supposedly far less side effects.For those of you who can wait my prayers are with you as well

If you want to do something to help get these meds approved and educate yourself you can go to Change.org site or research GS7997(Gilead), and Bristol Myers declatisvir.

God bless all of you and may He help us in our struggle with this nasty virus.

Barb