Mike Simon Thread Continued

[jmjm530]

Mike,

The other thread was closed so I hope you didn't mind I grabbed an open slot so we can all follow your progress in one spot.

First, I guess a kind of congratulations in a weird way is in order! In fact, I think you mentioned earlier that you never thought you'd want the virus to return -- but it really appears to be the MUCH better of the two alternatives. Of really good note is that your liver is "soft" and only stage 2 out of 6. That's practically virginal!

I understand, based on some recent studies I've seen, that elevated enzymes can correlate with hepatitis C in the liver, even if non-detectible in the blood.

Assuming though that your're still hep c negative via senstive Heptimax TMA, then how will they monitor any future progress regarding viral eradication if that is their intent with the proposed peg and riba? Or, are they simply using peg and riba for mainteance until let's say Vertex proves itself -- and then they plan to try that.

Last question -- and if you're too worn out -- please don't bother to answer. When they found Hep C in your liver via biopsy, did they do any special tests to locate it -- or was it just a normal biopsy? I assume this was some special test they used since a number of people have post-tx biopsies but haven't heard any report back that they were hep c positive but VL negative.

Again, glad you're liver seems to be working out, and as for the pesky virus, I'm sure you'll have it beat. This also I guess accounts for why your wise transplant team has had your viral load tested every month after your SVR.

All the best.

-- Jim

[GoofyDad]

Thanks for sharing and keeping us posted. What a very strange set of circumstances. Sorry you have to get back on the juice - even if it is better than some alternatives.

[jmjm530]

<a href="http://www.natap.org/2005/HCV/090505_20.htm">This</a> is the study I was looking for that shows HCV virus in the liver of some individuals with negative TMA.

Please note this editorial note:

"..immediately below is a brief commentary. In a following email is a longer EDITORIAL from JID discussing and questioning the study methods and findings. Two important points are raised: was the study methodology reliable in detecting HCV RNA in PBMCs & the liver; if reliable, what are the clinical importance of such findings. One potentially important point of clinical significance is that HIV+ individuals who test HCV RNA negative in blood may have HCV-infection, but not realize it."

[mikesimon]

I my surgeon Paulo feels that the virus was never fully eradicated but a low enough VL that my serum tested undetectable per Heptimax. As Paulo explained it, when the immunesuppressive drugs are reduced to a certain level (different for each patient) the enzymes can become elevated due to the immune system tying to eradicate the virus in the liver cells. This did not surprise him at all. In fact, when he came into the room he was looking at my labs (serum) and he said that it looks like HCV to him. I asked what the biopsy said and he asked did I get it already. He had been in South America and just got back late Sunday. I said I had the biopsy Friday and he found the report and confirmed the HCV. The full report had not been transcribed yet but I have the abbreviated report. He is scheduled to go over it in depth with the liver pathologist but he doesn't think anything will change with a closer inspection. He characterized it as a tricky balancing act with the anti rejection drugs and the HCV.
Paulo didn't mention any suspicions that the virus is elsewhere aside from my liver. It just didn't come up. As far as how his views coincide with the hepatologists the only clue I got was that he told me he didn't want me fooling with the hepatologists at the center - that they can screw things up easily.
In case it's not clear I had HCV prior to transplantation so that accounts for my having it post TP.
Kalio: Believe me when I say that I am not trying to goad you in any way but when Paulo palpated my liver and found it soft and normal I told him that I could feel it like I could when I had active HCV - before clearing with TX. I asked him about the "restructuring" and he laughed and said " It's crazy what some people say - it's swelling that you feel". I just wanted you to know what he said. I know that he's not God and he could be wrong but this guy does a lot of transplants - sometimes 2 in a day - and he knows this stuff better than anyone I have every talked with.
Mike

[mikesimon]

I asked Paulo what happens to HCV patients with undetectable serum who get a "blast" (steroid intravenous) and he said the HCV can bloom quickly and he's seen it a number of times. Jim or willing - whoever speculated that was why I got so many Heptimax tests -you're likely right on that one.
Mike

[jmjm530]

Thanks for the explanation. What I'm still confused about is how did he make the determination that you still have HCV virus in your body, albeit at levels below Heptimax? The only way I would imagine this to be possible is if he did some sort of PCR or TMA on your actual liver tissue.

Maybe this sentence in your prev post gives a clue:

"As far as how his views coincide with the hepatologists the only clue I got was that he told me he didn't want me fooling with the hepatologists at the center - that they can screw things up easily."

LOL about how different specialists view each other. Still, I wonder in lieu of actual tissue testing for HCV, what conclusions a hepatologist would come to regarding to whether or not the virus has indeed return. Not to say who might be right or wrong. Still a bit beyond my head.

All the best.

-- Jim

[mikesimon]

They tested the tissue sample. Mike