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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
"I was told by their Hepatologist that I am sicker than the MELD score suggests."
Kathy, I think what Magnum was saying was while the MELD score accurate as far as the amount of time someone has to live, certain patient feel more ill than then others with the same MELD score number.
Magnum has had a number of months of very bad ascites for which he had to have repeated parenthesis. And his loss of weight and general weakness is not what is commonly seen in a patient with such a low MELD score.
The great thing is that Magnum is a fighter and he doesn't give up. So despite the many issues he has had, he has managed to hook up with Northwestern knowing that he is in their system and should he need it, he can count on them if and when he gets more ill.
I also found it advantages for myself 5 years ago when I was first diagnosed with cirrhosis to get hooked up with UCSF transplant center. It has a lot to do with all the friends relationships I have build over the years. It definitely helped me to be picked and screened first here at my transplant center. My doctor has help me in so many ways and I have many people at UCSF pulling for me, which is wonderful.
Over the years I have met other pre-transplant patients with MELD scores that never went up yet I could see then getting hepatic encephalopathy and ascites more and more. So I understand Magnum predicament. I am in the same boat with my liver disease. 2 years ago I had MELD score of 18 and 19 now before I started hep C treatment my MELD is only 11. It has been coming down over the last 2 years, yet my encephalopathy is way worse and general feeling of illness is worse. I am lucky to have gotten liver cancer as I never would have gotten a transplant by blood MELD score numbers alone. With my cancer exception points I have a MELD of 30. Still low here in Northern Cali but getting close to showing up on backup lists.
Magnum did every thing he could to beat the hepatitis. Unfortunately the treatment's powerful drugs impacted his fragile liver and made his liver disease worse. All cirrhotics should realize this is a risk we all take when we treat with interferon based HCV treatment. Although it doesn't happen often, estimates are around 10% of patients, it is a possibility.
Luckily Magnum knows how to regroup from such a setback and is now moving forward with managing his cirrhosis and doing all that he can to have a good prognosis. Magnum has also helped me with some issues even though he has a lot to deal with.
"Attitude is a little thing that makes a big difference." Winston Churchill
Cheers!
Hector
Kathy, I think what Magnum was saying was while the MELD score accurate as far as the amount of time someone has to live, certain patient feel more ill than then others with the same MELD score number.
Magnum has had a number of months of very bad ascites for which he had to have repeated parenthesis. And his loss of weight and general weakness is not what is commonly seen in a patient with such a low MELD score.
The great thing is that Magnum is a fighter and he doesn't give up. So despite the many issues he has had, he has managed to hook up with Northwestern knowing that he is in their system and should he need it, he can count on them if and when he gets more ill.
I also found it advantages for myself 5 years ago when I was first diagnosed with cirrhosis to get hooked up with UCSF transplant center. It has a lot to do with all the friends relationships I have build over the years. It definitely helped me to be picked and screened first here at my transplant center. My doctor has help me in so many ways and I have many people at UCSF pulling for me, which is wonderful.
Over the years I have met other pre-transplant patients with MELD scores that never went up yet I could see then getting hepatic encephalopathy and ascites more and more. So I understand Magnum predicament. I am in the same boat with my liver disease. 2 years ago I had MELD score of 18 and 19 now before I started hep C treatment my MELD is only 11. It has been coming down over the last 2 years, yet my encephalopathy is way worse and general feeling of illness is worse. I am lucky to have gotten liver cancer as I never would have gotten a transplant by blood MELD score numbers alone. With my cancer exception points I have a MELD of 30. Still low here in Northern Cali but getting close to showing up on backup lists.
Magnum did every thing he could to beat the hepatitis. Unfortunately the treatment's powerful drugs impacted his fragile liver and made his liver disease worse. All cirrhotics should realize this is a risk we all take when we treat with interferon based HCV treatment. Although it doesn't happen often, estimates are around 10% of patients, it is a possibility.
Luckily Magnum knows how to regroup from such a setback and is now moving forward with managing his cirrhosis and doing all that he can to have a good prognosis. Magnum has also helped me with some issues even though he has a lot to deal with.
"Attitude is a little thing that makes a big difference." Winston Churchill
Cheers!
Hector
Glad to see you are able to post. So its working now. Do you know what the problem was in posting?
Cheers!
Hector
Cheers!
Hector
OH, Magnum, this is terrible. And you have tried so hard and pushed so hard to make things available to you so you would not reach this stage. Of course, there is no telling if you would have had success earlier in your liver disease either but I sure wish the drug companies would have been more cooperative. It would be wonderful if you could get into one of these trials without interferon or a PI. If not, I hope it is possible to find a living donor.
You know, ejoli from this board did Victrelis in a trial and although she did SVR, her cirrhosis decompensated at the end of treatment and she is left with ongoing encephalopathy. I remember others whose livers were worse off after tx and it all seems to depend on the stage going in. I am at a loss how hepatologists can say your meld score should be lower than it is. Is it possible that some of your lab scores have been bolstered by supplements and other things you have been doing to sustain liver health?
My heart goes out to you. I know somehow you will make this work.
Kathy
You know, ejoli from this board did Victrelis in a trial and although she did SVR, her cirrhosis decompensated at the end of treatment and she is left with ongoing encephalopathy. I remember others whose livers were worse off after tx and it all seems to depend on the stage going in. I am at a loss how hepatologists can say your meld score should be lower than it is. Is it possible that some of your lab scores have been bolstered by supplements and other things you have been doing to sustain liver health?
My heart goes out to you. I know somehow you will make this work.
Kathy
so sorry to hear about your health. i am sending you hugs and some prayers. best of luck to you and please keep us posted! we care...belle
Sorry to hear things are worse but I am curious why your doctor put you at risk by not following treatment guidelines? They cleary state if one is not under 100 at week 12 treatment should stop.
It is good to hear from you, and thank you for the update.
I am very sorry to hear that your condition has worsened and that you are so ill. My heart goes out to you. I am hoping someone on the forum has some helpful information and/or suggestions (and I see OH has already offered some good info). I hope you can find a treatment that works for you.
Best of luck and please do keep us informed.
I am very sorry to hear that your condition has worsened and that you are so ill. My heart goes out to you. I am hoping someone on the forum has some helpful information and/or suggestions (and I see OH has already offered some good info). I hope you can find a treatment that works for you.
Best of luck and please do keep us informed.
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