Aa
Mike Simon Thread Continued
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
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
I don't really know about personality types, and especially when it comes to my own. As to taking it lying down: I don't know what you'd have me do but it's obviously more than I am doing. I can get a Heptimax any time I want one - the script for monthly tests is written and at Quest. I had one May 3 so I can get it any time in June. I am not too concerned with what it was yesterday but rather what it will be tomorrow. I just thought I'd give it a week or so before I test. I get the results the next day so I won't be sitting around wringing my hands over it. As to when I will be undetectable with the FK reduction and the TX: I may be undetectable now as far as my serum is concerned. Right now I'd like to see a decrease in my enzymes.
willing, you may be right about the test - you know more about that than I do. As I wrote, the only description on the report was: "The test used was an in-house quantitative real-time RT-PCR assy (sic)".
Mike
willing, you may be right about the test - you know more about that than I do. As I wrote, the only description on the report was: "The test used was an in-house quantitative real-time RT-PCR assy (sic)".
Mike
pretty tempting...maybe you can put that pill box on lay-away for me? One thing's for sure: if you and Magnum were competing for the same interferon sales job (see his "Update on Infergen torture" post above) I think you'd win hands down. All that talk about shooting the dog and strangling passing strangers really puts a dent into the carefully-crafted marketing pitch.
I am hoping that is the case. I have joined the TX club again. I got my drugs today and man, times have changed. I got a blue and red cooler handbag with the drugs and a video and all kind of meaningless junk. I shot the 90 mcg. and I think I can feel the misery already. I recall having to wait about 3 days before I felt bad but this time it seemed to hit me fast but maybe it's my overactive imagination. I will get a Heptimax next week and I'll post the results. I hate being the guy in this position but it has provided a true learning experience for a lot of us here and I can well imagine people's interest in my upcoming PCR. I can also imagine the grief many doctors will face when the questions start flying about all the things we have been discussing. And, it probably serves them right. I can not stress enough that Paulo did not seem at all surprised with my biopsy results. There was not a scintilla of surprise when he looked at my biosy which confirmed his initial call that it was HCV. It was like "yea, the enzymes are high because of the hepatitis". I guess he's seen this enough that it's old hat to him. I can tell you one thing: it sure wasn't for me. I was floored. Mike
ok listwn forgt who QHO I m . WhaT i Want to know is what you ARE SAYING? Mike I know you and I trust you and I fully 1000% believe you with my life, understnd me bro? I got you! I believe YOU!!!!!!!!!!!!!!Il be back
Harley Dude/Ral - It's great to hear from you guys. Thanks so much for your kind words to me.
Mattie, if rejection is mild and caught early enough dose adjustment might fix things. The blast stops it right away and though we HCV people worry and though it does shock the pancreas(can contribute to diabetes onset and increase insulin requirements of diabetetic for a month or so...oral steroids usually follow the blast for a few weeks or a month) and it also sjocks the liver but it halts rejection and that's the killer. Just make sure that if your husband gets a dose adjustment they increase lab frequency - insist on that... I like weekly labs after dose adjustment but every other week is probably okay too - but get them and scream until you're heard if you see any changes in lab values.
Ina, I don't recall anyone specifically mentioning the possibility of relapse in the context of this particular dose reduction but HCV relapse has always been recognized as a possibility - that's why I got monthly Heptimax Tests. Yes, I would have still acquiesced to the dose reduction had it been discussed. FK is nephrotoxic and as the history of transplantation evolves the damage to the renal system has been well documented and the possibility that significant dose reductions can be made without prompting rejection is now the course that most cutting TP centers are pusuing. In the old days they'd just maintain the original dose and the renal problems would ensue and often kidney transplantion was the only option.
Mike
Mattie, if rejection is mild and caught early enough dose adjustment might fix things. The blast stops it right away and though we HCV people worry and though it does shock the pancreas(can contribute to diabetes onset and increase insulin requirements of diabetetic for a month or so...oral steroids usually follow the blast for a few weeks or a month) and it also sjocks the liver but it halts rejection and that's the killer. Just make sure that if your husband gets a dose adjustment they increase lab frequency - insist on that... I like weekly labs after dose adjustment but every other week is probably okay too - but get them and scream until you're heard if you see any changes in lab values.
Ina, I don't recall anyone specifically mentioning the possibility of relapse in the context of this particular dose reduction but HCV relapse has always been recognized as a possibility - that's why I got monthly Heptimax Tests. Yes, I would have still acquiesced to the dose reduction had it been discussed. FK is nephrotoxic and as the history of transplantation evolves the damage to the renal system has been well documented and the possibility that significant dose reductions can be made without prompting rejection is now the course that most cutting TP centers are pusuing. In the old days they'd just maintain the original dose and the renal problems would ensue and often kidney transplantion was the only option.
Mike
OK, maybe this is mere small-print quibbling, but, until your VL test comes in, I don't believe you can be certain you've relapsed. SVR is defined by the absence of serum VL. There is very limited data on liver tissue RNA and we don't really know how many SVRs have continuing but controlled low-level infections. Perhaps I'm being foolishly optimistic, but I'd say there is still some chance the prograf dose increase will quiet the T cells back down and ALTs will return in range without the VL ever reaching detectable level.
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