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Hep C treatment and kidney transplant patient

I was recently dx with Hep C with a  liver biopsy report showing mild actvity with focal mild periportal fibrosis (grade II, Stage I - II), GGT of 37, Genotype 2B, and a Hep C RNA by PCR of 5.2.  The big dilema is that I've had a kidney transplant about 12 years now and I don't want to jeopardize my kidney for HEP C treatment if I don't need to.  Can anyone lead me in the right direction as to where I can look up similiar cases.  My doctor wants to treat but with lower doses.  PLEASE HELP!!!
35 Responses
Avatar universal
there is a gal that comes here that is waiting for a kidney transplant and is treating hep c first, her name is Lin Thomas
Avatar universal
you may want to discuss using pegasys instead of pegintron with your doctor.  pegasys  is metabolized by the liver rather than the kidneys.  pegintron is metabolized by the kidneys.  just my .02 cents worth.   good luck to u...
Avatar universal
Hi Hope, saw your question, there aren't any easy answers to that question, it took me two yrs to get the courage to treat the Hep C, I couldn't face the prospect of dialysis again, was on for 2 mths. hope it never has to happen again. I've treated with just Pegasys and it did wonders, I'll never regret the decision I made even if I have to go all the way with it I now feel like I can. I have had this for at least 30 yrs. I will say this though if there is any chance of losing your transplant, think long and hard, read all you can, talk to your drs. and find the best thing for you, you need all the info you can get on the diseases and which offers the biggest threat to your health, I know neither are easy. Good Luck with your decision. Linda
Avatar universal
Hello all you fellow heppers.
    
     I finally got my end of tx results and after reading some other posts about how sensitive some tests are or not, I am a little distressed. I know that the test they used is one that only goes down to 615 on levels. From what some of you have said this test is just about obsolete and that makes me a bit leary on celebrating just yet. Even though they told me it was undetectable at that level, what I am already feeling only 3 weeks post tx is making me nervous. I am seeing signs that I had before tx that had backed off but now seem to be returning quickly,things like redness in my face without exertion, horrible belching and the old feeling of my sugar levels dropping out from under me without warning and feeling sick to my stomach and feintness. I have cirrhosis (2/4) and had been tx for h.prylori infection prior to starting hepc tx. I know none of you are doc's but these are my concerns and fears as I was told that I would not be tested again for another 6 mo's. I know with my symptoms that my chances of clearing were a little lower but I don't want to wait that long to be tested again. Wouldn't it be better to ask for another test sooner than that? Sometimes I get the feeling that because I am a low income patient that I am not treared as aggresively as someone with better insurance and better odds. Any suggestions as to how to go about dealing with this?? To be honest I am just a little more than nervous and don't know what to do. I do know that I don't want to give this virus any more chances to hurt me more than it already has. Thanks for all of your support, it helps a lot. Hope everyone is doing ok out there and I'll take this chance to wish you all Happy Holidays.
Avatar universal

Hi there, when you say you have cirrhosis at 2/4 I take that you are stage 2 out of 4. If that is right being stage 2/4 is NOT cirrhosis. Far from it your only half way there. I am stage 4/4, that is cirrhosis. Yes a more sensitive test would be nice but even then i would want to wait till 3 months post tx. See if you can press for one at 3 months. And then if they still do the 615 test and not one more sensitive you should have a better handle on where you stand. Sometimes are minds can play tricks on us and with are the worry and stress we might read more into something. Now im not saying you are im just going my my own personel experience's. Lets just say for now you are svr as you show un-d. But let me just say this, even though im stage 4/4 im still kicking and being kicked..LOL Still fill pretty good. Im geno 1 and getting ready to start tx. If i get svr or not i still plan on being around for along time. For the most part hcv is a slow moving virus. So try not to worry so much. Put a smile on that face and have a happy holiday. Or as i would rather say a very merry xmas to you. Now wheres that smile?. :) Best of luck to ya.

Stay well............John
Avatar universal
that is a dissappointment for sure! My PCP just ordered my last PCR, maybe yours can do that for you?  
There is a study that shows the 3 month results to be almost 100% with the 6 mo test, and even with the 4 wk post tx results. Maybe you can print it and show it to your dr.
  My practice does a 4 wk, 3mo, 6mo and 12 mo post PCR.  I too felt weird symptoms about 3 wks post tx and was sure it was back, but it wasn't. You should not have to wait that long to find out, especially if you plan to keep fighting the hcv.

http://hcvadvocate.org/news/reports/AASLD_2004/Posters_AASLD_2004.htm#A62
100019 tn?1335923317
I don't necessarily think you might be receiving poor care or treatment because your low income.  While I do agree its possible, based on my experience and some other posts I've read so many dr's do things so differently.

I do have ins (not the greatest) and I think I would get the same care from my dr if I was destitute.  LOL  I asked him to do a 4 week PCR and he refused.  He only does them at 12 and 24 weeks.  We haven't even gotten to the discussion about post tx.  I do know of MANY people that have to wait 6 months post TX for another PCR.

Avatar universal
I always wondered how much HCV was influencing my renal function, I bookmarked this Oxford Journals article
http://ndt.oxfordjournals.org/cgi/content/full/18/8/1573
Avatar universal
To those who suffer from symptoms post-tx, I can't point to any study to back up my opinion, but I believe the meds might be the culprit. It is also possible that the toxins from the meds and virus remain in the body. Maybe a good detox (ACV is one way) and flushing of the lymph system would help.
96938 tn?1189803458
Would you please elaborate on ACV.  Not familiar with the term. Tks
96938 tn?1189803458
Thanks for the lead.  I'm going to be post-TX next week and my goal is to get brain and body (not just liver) back into some semblance of normalcy.  But after 30 years of HCV and then TX, not sure what normalcy really is anymore.
Avatar universal
i just have a small comment about being 2 of 4 on your test. first of all there "are" different stages of cirhosis. so you should find out if you actually have "cirhosis". they usually use a "meld score" for cirhosis here in the states for cirhosis staging, but i think there could be other tests as well, i'm not sure.

or see if that test was for the grade and stage of the "fibrosis"....something that comes before the cirhosis like john was talking about...

time to get it clear with the hepatologist.

nann, sorry you are having troubles,like the redness in the face and the h.prylori. it's hard to say what going off interferon could be doing to your previous problems...perhaps it was keeping those things at bay? i don't know?...but alot of folks feel lowsy after stopping tx. and then there's also all the fear to factor in..

you could do a search on h.pylori. it does cause stomach aches from what little i read and it can be related to cirhosis too...remember the interferon gets rid of the virus not necessarily the cirhotic liver...although some folks say it can improve after tx...others say no, it will just halt further damage...its one of those debates. perhaps in some cases it seems to go down a stage of cirhosis and in others no.

if you really do have cirhosis as you say then you should remember that going off the treatment doesn't necessarily mean you will not have some liver problems from your cirhotic liver...

this is all an "if", first thing to find out is if you do have cirhosis...

sorry so long...and scattered...just some of my thoughts...

sandi

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