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Magnum Update
It's been a while since I posted. My condition after the last treatments has gotten much worse. That treatment was with the traditional medicine and the added Victrelis. My MELD score is 9 (up from 7 for several years), and after 32 tests (I had to go from Las Vegas to Chicago at Northwestern Memorial Hospital to have them done), I was told by their Hepatologist that I am sicker than the MELD score suggests.
However, until I reach 15 or higher on the MELD score, I will not be put on the transplant list, although both the Las Vegas and Chicago Hepatologists are sure I need a transplant now. The only way I can get it now with this low MELD score is to obtain half a liver from a relative or friend.
I've lost 43 lbs. in 6 weeks. Hepatologist Dr. Gish says it's very unusual and it seems as though there may be something beside the liver causing all this havoc. At this point, I am weak, thin and can't work. Traditional blood tests are being done on a timely basis. Liver MRI was ok, as well as all other liver functions with the exception of a possible sugar work up to be kept an eye on to be sure I don’t have diabetes.
So, I wait and wait until I get sicker before being put on the list. I want to particularly thank Hector for all his support and knowledge in helping me to understand what’s happening to me. He is truly a wonderful person and we should all wish him much luck in getting his transplant soon.
So there it is. The Hepatologist feels strongly that the last treatment made the liver much worse (triple therapy with Victrelis). I can’t say everyone will be affected the same way as myself, but I would have your doctor keep a very very close eye on the triple treatment. By the way, I did get down to a 300 viral load from 2.3 million. However, it was at week 16, four weeks after I should have cleared at week 12. Therefore I was told to stop after 5 months
As others, I’m waiting to either get into a clinical trial with Pharmasset PSI-7977 or to wait for it’s release. I read that 40 out of 40 cleared with this new drug which has no Interferon (the culprit my doctor feels causes all this misery), and hardly any side effects.
Hoping everyone clears and has a good life ahead...
Ciao,
Magnum
However, until I reach 15 or higher on the MELD score, I will not be put on the transplant list, although both the Las Vegas and Chicago Hepatologists are sure I need a transplant now. The only way I can get it now with this low MELD score is to obtain half a liver from a relative or friend.
I've lost 43 lbs. in 6 weeks. Hepatologist Dr. Gish says it's very unusual and it seems as though there may be something beside the liver causing all this havoc. At this point, I am weak, thin and can't work. Traditional blood tests are being done on a timely basis. Liver MRI was ok, as well as all other liver functions with the exception of a possible sugar work up to be kept an eye on to be sure I don’t have diabetes.
So, I wait and wait until I get sicker before being put on the list. I want to particularly thank Hector for all his support and knowledge in helping me to understand what’s happening to me. He is truly a wonderful person and we should all wish him much luck in getting his transplant soon.
So there it is. The Hepatologist feels strongly that the last treatment made the liver much worse (triple therapy with Victrelis). I can’t say everyone will be affected the same way as myself, but I would have your doctor keep a very very close eye on the triple treatment. By the way, I did get down to a 300 viral load from 2.3 million. However, it was at week 16, four weeks after I should have cleared at week 12. Therefore I was told to stop after 5 months
As others, I’m waiting to either get into a clinical trial with Pharmasset PSI-7977 or to wait for it’s release. I read that 40 out of 40 cleared with this new drug which has no Interferon (the culprit my doctor feels causes all this misery), and hardly any side effects.
Hoping everyone clears and has a good life ahead...
Ciao,
Magnum
My hepatologist go so irritated when I referred to myself as a transplant victim.
He told me I was a transplant survivor~ and he's right.
I am and you will be too:)
He told me I was a transplant survivor~ and he's right.
I am and you will be too:)
Thanks to all for you concern. I will post progress as it happens. Next step, move to Chicago (temporarily) for several months during and after transplant.
There is a lot of hope for transplant victims. For example, David Crosby of Crosby, Stills & Nash, had his transplant done in 1994 and is still touring 12 years later.
May we all clear with the new drugs if the old didn't work, and may you all lead a good life...
Magnum
There is a lot of hope for transplant victims. For example, David Crosby of Crosby, Stills & Nash, had his transplant done in 1994 and is still touring 12 years later.
May we all clear with the new drugs if the old didn't work, and may you all lead a good life...
Magnum
I'm so very sorry Magnum!!!!
I agree with Kathy, I think... think in some people TX can accelerate
further damage and illness. I'm so sorry!!
Sending hugs
Elaine
I agree with Kathy, I think... think in some people TX can accelerate
further damage and illness. I'm so sorry!!
Sending hugs
Elaine
I'm sorry to hear that things aren't going well for you.
I will keep you in my mind and heart.
Mike
I will keep you in my mind and heart.
Mike
Terribly sad to hear this news , you are a fighter for sure hang in there . My thoughts and prayers are with you , we will have better drugs available to us very soon , sooner I hope .
I'm so sorry to hear this. I hope the Doctors can find an explanation for the weight loss. You will be in my thoughts and prayers. Hopefully the 7977 interferon free tx will be here in 2013, it must be very frustrating for you,knowing it is so close, but not yet available.
You are an inspiration, and a strong fighter~
You are an inspiration, and a strong fighter~
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