Hep C after transplant

I should have asked the TP cordinator this question, but didn't, so I am looking for answers here. I asked my husbands TPC how the Hep C was affecting his new liver, and she pointed to a # that was in the millions (it was 1,???,???) from the bloodwork right before he left the hospital in Mar 2012. This particular blood test isn't done everytime he does bloodwork, which is down to every other week now, by the way.

Anyhow, does anyone have any ideas about what they are measuring in the blood to determine what the Hep C is doing since transplant?

Mamma Lama, I saw in one of your reports on Mike, after transplant, and it had a high # like that. I went back trying to find it, because you had listed everything, but couldn't find it.

Thank you for any insight on this.

Debbie

Debbie,

Mike's Viral Load -- the number of copes of the virus per whatever unit they use...the higher the load, the more copies, of course.

Before Mike's 2003 combo treatment, his viral load was over 1 million. After 6 months, his load was 7 million. Evidently Mike's brand of the virus loves Interferon and Ribavarin.

After transplant his viral load is checked every 3 months. It goes up and down. The Coordinator told us that is not unusual. Mike's however, is really high...or seems so to me. It was 54Million 6 months ago and 37 Million 3 months ago. It is time for another test with his next labs.

We have had various opinions on whether this is bad or not so bad. And whether treatment should be in Mike's near future from different members of the staff.

What I think I have been hearing is that the viral load bounces around after transplant.

One doc explained that those with Hep C, continue to have Hep C, and one would think if that was a terrible thing and folks got really sick again really quickly, that the hospitals that have big transplant programs would be clogged up with return guests....but they do not!!!

That made us feel really good.

Another doc told us that the protocols with the new drugs are not established post transplant, so they are holding on until there is more research done so that the treatments are properly administered. He was concerned especially about the protease inhibitors (if I spelled that right) having a negating effect on the anti-rejection meds...and we certainly would'nt want those to quit on them! They said maybe they can switch to cyclosporin, but that is not well documented yet either with the new drugs.

A new guy at our center has told us that they WOULD want Mike to have treatment so that he'd have the best outcome possible for the new liver. WE know these guys aren't goint to live forever, as no one does, and they'd have a better shot without Hep C bubbling on in the background.

I know some of our post TX folks have either done treatment post transplant or planning on it in the near future and I'm sure they'll chime in here.

Mike is well enough and in his right mind again, so he will be making his own decisoin on this.

He was very pro treatment when he did the first treatment, and participated in a study, feeling that at least someone else would be able to benefit from his efforts.

I'm not sure where he is on this now.

I do know he was a terrible MESS during treatment in 2003. For him it was almost exactly the same as when he was in ESLD. He had EVERY side effect on the list and has had lingering GI symptoms every since. His pancreas doesn't work right at all and he takes supplments (RX) before each meal. Even so he has chronic diarrhea most of the time. (Which was awful during the lactulose era.)

I hold firmly that this is like a chemo treatment for a cancer. to be endured in order to get well. And they say that the new meds, if you can tolerate them, will lead to a good outcome more often than in the old days.

But, if folks aren't dropping like flies after transplant, is treatment indicated??? That is the question.

Not sure this helps...

How may million?

Hugs, Carol

I thought it might be the viral load . . it was either 1 million or 10 million . . I only got to glance at it, so I'm not sure. The TPC knows me to be well informed, thanks primarily to everyone here, so she flipped to that page in his book, and said so far it looks really good and as we decrease the Prograf, the truth will come out. They only determine it every 3 months soo . .

Thanks for the input . . I'm gonna read up on it and see what I find!!

Debbie

Any news from 911 medic/ i sent her a txt msg today and got no response.

They check my viral load monthly, along with everything else. The RNA test is expensive, but my docs are very through and I'm glad they are. I did the interferon/ribavirin treatment beginning a year after my transplant. My viral load was low, but they wanted to nip it in the bud, or at least knock it down. I've been undetectable for the last 5-6 months. Remember that it took me 40 years for the Hep C to damage my liver, so even without treatment it would take a while to mess my new one up. One of my docs said if the last treatment doesn't work, I could do the 3 part therapy.

I read on webmd, that 800,000 viral load is considered high . . so I guess 1 million isn't real bad!!

Amy, I know its tough . . . it seems like forever between tests and procedures. I am sure John feels the same way . . hospitals are just not a place where spirits are high. When you look back after all of this is over, it'll seem like it went by really fast. i hope the infection is cleared soon and a liver comes right behind that.

Debbie