Aa
mandamus
I am in prison and have numerous questions I am hoping someone can provide me with the answers to:
1. The forns index for determining fibrosis/cirrhosis is= 7.811 3.131 x In platelet + .781 x In GGT + 3.647 x In Age .014 x cholesterol. I comprehend the equations that have the plus and multiplication symbols, but I do not understand what the gap between 7.811 and 3.131 and In Age and .014 represents. Since I have to come up with "one" number what do the blanks represent?
2. Although my ALT and AST have never been "significantly" elevated, except during the few times I drank over the years, I still have developed significant fibrosis. My doctors keep on bringing up "Oh your liver enzymes are not very high" which, they are interpreting you are doing well. However, since it was determined in 2009 that I was stage 3 grade 3 (metavir scale), I don't hold a lot of faith in my liver enzymes. Moreover, I read in the AASLD's guidelines that some percentage of individuals who have normal ALT levels have sustained significant fibrosis. Anybody got anymore on that?
3. I also had hep B. It is resolved, however, I read somewhere that persons who have had hep B and get hep C that their disease progresses faster than otherwise. Any information on that?
4. My ferritin levels were, approx. a year ago 455. I know that 300 is the upper level of normal. My doctor was going to send me to a phlebotomist (spelled wrong maybe) but Bureau of Prison doctors in Central Headquarters shot it down. I have no idea if I have hemachromatosis (probably spelled wrong) but I don't think so. However, should it be treated and why?
5. I failed treatment with interferon and ribavirin. I also developed anemia and was close to going under 500 on my ANC. When the protease inhibitors came out I was put on Incivek, interferon and ribavirin. Although I was taking duel combination for 3 months before I started feeling bad; after my first shot of interferon it felt like I was hit by a bus. I concluded that I was having a drug to drug reaction between the effexor and interferon (EXTREME nausea). My doctor refused to listen to me and said "It's not the effexor" and I said, "it is the effexor". I discontinued the effexor. 95% of the nausea went away. However, I started getting seriously depressed. Rather than prescribing an antidepressant I could tolerate with interferon, they ended up discontinuing my meds. Needless to say I went off.
6. Now, the last doctor I saw said that he believes that the treatment would kill me because in 3-4 weeks my platelet count dropped from 225,000 to107,000 and significant drop in my white blood cell count (I don't know the numbers). My opinion is that I need to see a specialist. I don't know if there isn't some way that the platelet count and white blood count can't be rectified while on treatment. Moreover, since my doctor is not a specialist and the bureau of prisons does not employ a specialist (neither a hepatologist nor infectious disease specialist) I want to see one but they don't want to approve it. I am seeking some input on this. It's not that I necessarily question my doctors here, but they have provided me false information in the past and I don't know. It's not like I can go out and see one on my own, but I am thinking about filing a "mandamus" with the federal court in Washington, DC and asking them to order the doctors in Central Headquarters of the BOP to direct that I am seen by a specialist. Anyone have any information on filing such a mandamus?
7. I know there is a super protein on the horizon that wipes out Ebola hepatitis, and all viruses. What else is coming out on the hep c and what kind of time frames are we looking at.
I actually have more questions but these are the most pressing ones. Thanks!!!!
1. The forns index for determining fibrosis/cirrhosis is= 7.811 3.131 x In platelet + .781 x In GGT + 3.647 x In Age .014 x cholesterol. I comprehend the equations that have the plus and multiplication symbols, but I do not understand what the gap between 7.811 and 3.131 and In Age and .014 represents. Since I have to come up with "one" number what do the blanks represent?
2. Although my ALT and AST have never been "significantly" elevated, except during the few times I drank over the years, I still have developed significant fibrosis. My doctors keep on bringing up "Oh your liver enzymes are not very high" which, they are interpreting you are doing well. However, since it was determined in 2009 that I was stage 3 grade 3 (metavir scale), I don't hold a lot of faith in my liver enzymes. Moreover, I read in the AASLD's guidelines that some percentage of individuals who have normal ALT levels have sustained significant fibrosis. Anybody got anymore on that?
3. I also had hep B. It is resolved, however, I read somewhere that persons who have had hep B and get hep C that their disease progresses faster than otherwise. Any information on that?
4. My ferritin levels were, approx. a year ago 455. I know that 300 is the upper level of normal. My doctor was going to send me to a phlebotomist (spelled wrong maybe) but Bureau of Prison doctors in Central Headquarters shot it down. I have no idea if I have hemachromatosis (probably spelled wrong) but I don't think so. However, should it be treated and why?
5. I failed treatment with interferon and ribavirin. I also developed anemia and was close to going under 500 on my ANC. When the protease inhibitors came out I was put on Incivek, interferon and ribavirin. Although I was taking duel combination for 3 months before I started feeling bad; after my first shot of interferon it felt like I was hit by a bus. I concluded that I was having a drug to drug reaction between the effexor and interferon (EXTREME nausea). My doctor refused to listen to me and said "It's not the effexor" and I said, "it is the effexor". I discontinued the effexor. 95% of the nausea went away. However, I started getting seriously depressed. Rather than prescribing an antidepressant I could tolerate with interferon, they ended up discontinuing my meds. Needless to say I went off.
6. Now, the last doctor I saw said that he believes that the treatment would kill me because in 3-4 weeks my platelet count dropped from 225,000 to107,000 and significant drop in my white blood cell count (I don't know the numbers). My opinion is that I need to see a specialist. I don't know if there isn't some way that the platelet count and white blood count can't be rectified while on treatment. Moreover, since my doctor is not a specialist and the bureau of prisons does not employ a specialist (neither a hepatologist nor infectious disease specialist) I want to see one but they don't want to approve it. I am seeking some input on this. It's not that I necessarily question my doctors here, but they have provided me false information in the past and I don't know. It's not like I can go out and see one on my own, but I am thinking about filing a "mandamus" with the federal court in Washington, DC and asking them to order the doctors in Central Headquarters of the BOP to direct that I am seen by a specialist. Anyone have any information on filing such a mandamus?
7. I know there is a super protein on the horizon that wipes out Ebola hepatitis, and all viruses. What else is coming out on the hep c and what kind of time frames are we looking at.
I actually have more questions but these are the most pressing ones. Thanks!!!!
Cando darlin, you were not bashing anyone, that was a very good post and Idyllic's was spot on as well.
What bothered me was she blamed herself for her doctor's mistakes and it related to the very statement about how we need to be proactive.
I completely agree with that it is just that in many cases ppl are not able to be proactive and I don't think the responsibility is *all* on them.
Not to say that you meant that but there is the implication.
What bothered me was she blamed herself for her doctor's mistakes and it related to the very statement about how we need to be proactive.
I completely agree with that it is just that in many cases ppl are not able to be proactive and I don't think the responsibility is *all* on them.
Not to say that you meant that but there is the implication.
Well I hope Keith doesn't think I was bashing him in any way, I just felt he needed some realistic answers, his options are very limited. And being these new drugs that might be approved for geno 1 are for naïve only the only difference between him and someone not in is current position is clinical trials......
I agree that it is important to be proactive and do the research and I commend both you, Idyllic and cando for being the kind of people who are able to do so. (I am sincere)
I am not really speaking about Keith here, but about a lot of people who become incapacitated by extra hepatic manifestations, or who are incarcerated or just very green.
Many people besides being conditioned to trust their doctors do not have the ability to do the necessary research . This is why we have a medical establishment...like teachers in the classroom who are supposed to know their stuff and have our best interests at heart. It doesn't always happen that way. Do we blame the patient? The student? How much responsibility is theirs and how much belongs to the medical est.?
Not everyone even *knows* they can, let alone *should* do their homework.
What I am saying is while you guys are correct, in a perfect world we will all be our own effective advocates but our world is not perfect.
I think his expectation was reasonable under the circumstances.
I am not really speaking about Keith here, but about a lot of people who become incapacitated by extra hepatic manifestations, or who are incarcerated or just very green.
Many people besides being conditioned to trust their doctors do not have the ability to do the necessary research . This is why we have a medical establishment...like teachers in the classroom who are supposed to know their stuff and have our best interests at heart. It doesn't always happen that way. Do we blame the patient? The student? How much responsibility is theirs and how much belongs to the medical est.?
Not everyone even *knows* they can, let alone *should* do their homework.
What I am saying is while you guys are correct, in a perfect world we will all be our own effective advocates but our world is not perfect.
I think his expectation was reasonable under the circumstances.
After reading much of this thread I have to say I am confused. There seems to be no reason for one to even attempt current treatment as it just won't work, still being detected at week 24 makes that quite clear, as for the new drugs that are close to being approved they are not for you as it will be for treatment naïve geno 1, besides interferon will still be a part.
As for the all oral for geno type 1 we are looking at maybe 2 years as they are still in trials and it sounds like you will be out of prison at that time. I really don't see what even a biopsy at this time will do, best to wait when it's closer to being able to treat. By the time of your release it should be more clear on what will be the best combo for you being you know you are stage 3 or maybe 4 as both are at the current time harder to cure...... Wishing you the best.
As for the all oral for geno type 1 we are looking at maybe 2 years as they are still in trials and it sounds like you will be out of prison at that time. I really don't see what even a biopsy at this time will do, best to wait when it's closer to being able to treat. By the time of your release it should be more clear on what will be the best combo for you being you know you are stage 3 or maybe 4 as both are at the current time harder to cure...... Wishing you the best.
This is from Keith,
Thank Ceanothus for me. Actually, the Bureau of Prisons is getting a lot better at providing treatment. The problem is, I just do not have a lot of confidence in them with all that has occurred to date. In 2008 one told me after looking at my live enzymes, "Oh, your liver is in better condition today than it was 5 years ago. You have healed yourself," then refused to my first biopsy. 2 years late when one was finally ordered, I found out I was stage three. Then when I got on duel treatment, they kept me on for 44 weeks even though at week 24 I was still detectable (viral load). then this last time when I vehemently told him "its the effexor", then them taking me off without even speaking to me....It is a cluster f...well you know. :-).
Yes I will bring up the liver biopsy and see what they say. Since it was already approved, it should be a done deal. However, since these people haven't mentioned one iota about it, I wonder.
Thank you very much. If I had had access to zofran (maybe spelled wrong) it might have made a difference. Thanks again!
Thank Ceanothus for me. Actually, the Bureau of Prisons is getting a lot better at providing treatment. The problem is, I just do not have a lot of confidence in them with all that has occurred to date. In 2008 one told me after looking at my live enzymes, "Oh, your liver is in better condition today than it was 5 years ago. You have healed yourself," then refused to my first biopsy. 2 years late when one was finally ordered, I found out I was stage three. Then when I got on duel treatment, they kept me on for 44 weeks even though at week 24 I was still detectable (viral load). then this last time when I vehemently told him "its the effexor", then them taking me off without even speaking to me....It is a cluster f...well you know. :-).
Yes I will bring up the liver biopsy and see what they say. Since it was already approved, it should be a done deal. However, since these people haven't mentioned one iota about it, I wonder.
Thank you very much. If I had had access to zofran (maybe spelled wrong) it might have made a difference. Thanks again!
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