Thinking about treatment

I posted a few wks ago about kidney transplant with Hep C, they have decided not to attempt it till I've cleared the virus, I'm just wondering how bad treatment is, I've had biopsy 2 yrs ago with some scarring but no liver disease, My liver enzymes are normal butI don't even know what genotype I am. So now have to see GI or liver dr. to see about treatment, I'm scared to death, dealing with kidney disease and already taking Procrit is a big load mentally and then Hep C too which I've had for 25 yrs at least and didn't find out till initial transplant evaluation. Is the treatment bad, can you still function alone most of the time? I've been reading the posts and am just wondering if it's worth it. Do most people with no (cirhhois)can't spell, clear? Any input would be appreciated.

[ASmile4U]

I was dx in February with HCV, G1 and work in a dialysis clinic.  I would suggest talking with your neuphrologist and have him refer you to a hepatologist.  Because HCV is at a higher risk for dialysis patients (for various reasons), your nephrologist probably has a group of specialists he has worked with in the past.  It would be good to have the two doctors working closely together monitoring your tx and meds. Tx is doable for dialysis patients.   You'll have to carefully watch your fluid intake because of the kidney disease...that's why I strongly suggest working with a hepatologist who is familiar with dialysis patients.  I am at week 10/48..not nearly as bad as I had initially feared, I was scared to death.  I have only missed one day of work, that was in the beginning when I was first dx and somewhat depressed...trying to get a grip.  Now I'm anxiously counting down the weeks, looking forward to my 12 week PCR to see where I'm at.  My doc absolutely refused to do an earlier PCR.

[cuteus]

you might want to read the post titled "is fibrosis reversible" it has some good info on Svr rates.  If you have liver scarring(cirrhosis) you have liver disease.  I am not sure what you understand by liver disease, but hepatitis and cirrhosis are signs of it.
Hopefully you will be genotype 2 or 3 and rid  your body of this pest in only 6 months. the SVR rates are high for those genotypes. If you are a 1, you will need longer Tx and the rates are about 20% less than the other ones.

I understand Pegasys is not processed by the Kidneys the way pegintron is, it is liver primarily, so maybe your drs will suggest that interferon for you. Read and REad and print studies so that you are armed with enough knowledge to ask questions relevant to your unique case.  You are in charge of your health and the drs are there to assist YOU, not the other way around. gl to you

[rifleman]

I don't know if this is true, but it makes sense. . . .the anti-rejection drugs that you would need after a kidney transplant would suppress your immune system.  This would keep you from rejecting your new kidney.  It would likely also allow the hep virus to go postal on your liver. Probably wise to clear the virus beforehand.
Back in the early 80's they tried curing clotting disorders with liver transplants.  A liver transplant will cure these problems.  However, the people who received the new livers had been infected with HIV thru blood products and did not yet know it.  When they were put on the anti rejection drugs, the HIV went wild and killed the people in a matter of weeks.
My understanding is that, in most cases, a person's immune system is in a constant game of cat and mouse with the HCV virus, that's why it takes decades to cause serious damage.  Take the immune system out of the picture and. . . .
DJL

[twotells]

Linda,  It took the Hepatitis C virus 33yrs to cause scarring of my liver.  My biopsy revealed stage 3 liver disease which is called fibrosis or scarring.  It would have progressed to even more serious structural changes, called cirrosis (cirrhosis) (stage 4 liver disease), at a quicker pace because of my age (52yrs old at that time).  That is what convinced me to begin treatment with Pegylated Interferon and Ribavirin (the only treatment which works).  I'm thankful that the treatment appears to have worked, even though my genotype was 1b.  My recent PCR test showed no virus at 6mo post tx.  It sounds like you are roughly where I was when I decided to treat.  God bless,  Dave

[linthomas]

Thanks alot to everyone who replied, I feel better just hearing from some people who actually know what they're talking about, So the scarring is actually liver disease? The dr. that did my biopsy wasn't real clear on this. I don't believe this has ever really made me sick, but with kidney disease you can't really be sure of which one is doing what. But anyway thanks everyone for answering, I guess I will have to check it out if I don't want dialysis in my future. Take care Linda

[ASmile4U]

Here's some information you may find helpful:

http://www.mcl.tulane.edu/transplant/ki_hepc.htm

http://www.hivandhepatitis.com/hep_c/news/2004/091504_a.html

http://www.aidsinfonyc.org/tag/coinf/hcv2004/chap5b.html

[Lulu2005]

The only fallacy to what you all are saying is that liver transplant patients take the same immune suppression drugs that kidney patients take. Many of them do quite well and the virus does not go postal in them. Of course, it is better not to have to take the steroids and some doctors are using Cellcept instead and supposedly having some good luck with it.