Aa
Transfusionville
Well... I am having severe hemolytic anemia. Today, my hgb got down somewhere in the 7's and I was having a good deal of chest pain and dizziness and nausea so I went into the ER. (I began taking the increased 40k units per week of epogen Friday before last - so I'm two shots into the increased dose). One thing to think about - need to make certain the pegasys isn't causing bone marrow issues before pinning everything on the ribarvirin.
At any rate, I got a call that I have to testify tomorrow in front of the grand jury about my case. I am, of course, terrified. So in the ER they are telling me they can't do anything but transfer me to Huntsville or wait until tomorrow because my hematologist and liver specialist are both in Huntsville and I don't have a local admitting doc and they don't do the transfusions in the ER.
I told them I had to get transfused tonight in order to testify tomorrow. I was really touched. The nurses, who remember me from doing my rape kit, and from being in twice with hemolytic anemia secondary to the hepc treatment as a result of the rape, told the doctor that they would transfuse me IN the ER. They told him they could use it as training and that they wanted me out in time to "testify against the sob." Kind of a small community hospital here and I didn't know that many there had remembered me, so I found it really touching. At any rate, I'm back at home, going to try to catch an hour or two of sleep. I received two units and I feel wonderful, however, after I deal with court I will call my hematologist.
Very concerned about my blood counts. I've had a transfusion once before. With hemolytic anemia, transfusions sometimes just confuse the issue and actually stalemate your production of additional blood even more. It gets really complicated, especially when you have a hemolytic agent, a possible marrow suppressing agent, a pre-existing normocytic anemia, and then a new hemolytic anemia. Plus 1 new blood transfusion. What a mess. I'll have to call and let them get some kind of plan worked out later today. Prob need a bone marrow biopsy to see what's up in there. This is difficult coming on such good news of a UND at 4 weeks because I sure don't want to blow it now!
At any rate, I got a call that I have to testify tomorrow in front of the grand jury about my case. I am, of course, terrified. So in the ER they are telling me they can't do anything but transfer me to Huntsville or wait until tomorrow because my hematologist and liver specialist are both in Huntsville and I don't have a local admitting doc and they don't do the transfusions in the ER.
I told them I had to get transfused tonight in order to testify tomorrow. I was really touched. The nurses, who remember me from doing my rape kit, and from being in twice with hemolytic anemia secondary to the hepc treatment as a result of the rape, told the doctor that they would transfuse me IN the ER. They told him they could use it as training and that they wanted me out in time to "testify against the sob." Kind of a small community hospital here and I didn't know that many there had remembered me, so I found it really touching. At any rate, I'm back at home, going to try to catch an hour or two of sleep. I received two units and I feel wonderful, however, after I deal with court I will call my hematologist.
Very concerned about my blood counts. I've had a transfusion once before. With hemolytic anemia, transfusions sometimes just confuse the issue and actually stalemate your production of additional blood even more. It gets really complicated, especially when you have a hemolytic agent, a possible marrow suppressing agent, a pre-existing normocytic anemia, and then a new hemolytic anemia. Plus 1 new blood transfusion. What a mess. I'll have to call and let them get some kind of plan worked out later today. Prob need a bone marrow biopsy to see what's up in there. This is difficult coming on such good news of a UND at 4 weeks because I sure don't want to blow it now!
and to think earlier today I was gonna get on here complain about my infected jaw bone pain and my heat being out!!!
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Hey, sometimes its the things that seem small that are the most difficult pain wise. I had at some point in the past couple of weeks just this one swollen lymph node kind of under my chin and it hurt so bad every time I moved my head. I get swollen lymph nodes if I have any type of damage in my mouth or if I have any small infection on my face. Last week I had sores or ulcers in my mouth again, hence the swollen lymph node. The nice thing with the lymph nodes though for me is that they are basically draining lymph, these impurities, away from your body. And for me that system seems to work fairly quickly so if I have a swollen lymph node due to an injury above that area, it doesn't last more than a day or two. But anyway, an infected jaw sounds pretty painful to me. I was a real baby weenie once when I cracked one of my molars and every time I opened my mouth the air would hit the exposed nerve. Which means all the time basically because I talk so much. I thought I was going to die. I'm fairly certain I told everyone I was going to die lol
FlGuy, LOL - I forgot I'd written that. That was either a riba or a painkiller induced description I'm pretty sure...
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Hey, sometimes its the things that seem small that are the most difficult pain wise. I had at some point in the past couple of weeks just this one swollen lymph node kind of under my chin and it hurt so bad every time I moved my head. I get swollen lymph nodes if I have any type of damage in my mouth or if I have any small infection on my face. Last week I had sores or ulcers in my mouth again, hence the swollen lymph node. The nice thing with the lymph nodes though for me is that they are basically draining lymph, these impurities, away from your body. And for me that system seems to work fairly quickly so if I have a swollen lymph node due to an injury above that area, it doesn't last more than a day or two. But anyway, an infected jaw sounds pretty painful to me. I was a real baby weenie once when I cracked one of my molars and every time I opened my mouth the air would hit the exposed nerve. Which means all the time basically because I talk so much. I thought I was going to die. I'm fairly certain I told everyone I was going to die lol
FlGuy, LOL - I forgot I'd written that. That was either a riba or a painkiller induced description I'm pretty sure...
yes that wass a line worth reading twice.
(wouldn't want to see her comin after me with that imagination!!)
(wouldn't want to see her comin after me with that imagination!!)
"I'm seeing it as the diseased leprous castoffs of a dying hobbit hemaphrodite monkey junkie rotting in my veins" That's almost poetic, I bet you're good at scrabble too.
and to think earlier today I was gonna get on here complain about my infected jaw bone pain and my heat being out!!! Brr....everything is relative isn't it.
you hang in there, will be in prayer for you tonight.
you hang in there, will be in prayer for you tonight.
visions can really get us going....and the stress of the trial is not helping, but try to have visions of a cell door slamming shut forever so no else has to go through this and practice deep breathing.
they do test for a ton of things now, the blood supply..you have to focus on what could go right cause tomorrow could be better. do you have a ride tomorrow, id not call up, tell the DA and get someone to pick you up and drive you home, tell them about er and they'll send a car, may just be you laying back, but every little bit helps.
they do test for a ton of things now, the blood supply..you have to focus on what could go right cause tomorrow could be better. do you have a ride tomorrow, id not call up, tell the DA and get someone to pick you up and drive you home, tell them about er and they'll send a car, may just be you laying back, but every little bit helps.
I just wanted to say, Transfusionville and Magaritaville? Not even on the same map. I don't feel very good tonight. It's so weird, I have this vision (riba induced I'm sure) of all of these old blood cells of someone else's dying and decaying in my body.
That's right folks, one moment this gift from someone else was the elixir of life and now suddenly my mood shifts and I'm seeing it as the diseased leprous castoffs of a dying hobbit hemaphrodite monkey junkie rotting in my veins...
Yuck. I am SO nauseous tonight.
That's right folks, one moment this gift from someone else was the elixir of life and now suddenly my mood shifts and I'm seeing it as the diseased leprous castoffs of a dying hobbit hemaphrodite monkey junkie rotting in my veins...
Yuck. I am SO nauseous tonight.
God. That interferon never stops giving does it? Forget about having any immunity or wbc's...
Let me know how you're doing Deb,
Syd
Let me know how you're doing Deb,
Syd
Deb - was thinking about that. I'll call you about it later.
All - ok, so at least until we can get our heads wrapped around this, I spoke with my hematologist and he is ok'ing me on 40k 2x weekly on the epogen, as long as I don't let my blood become "too rich" - umm yeah. I'll try to reign that in, that richness of the blood thing. (snark)
He is very open to consulting with whomever we need in order to make the tx work and keep some blood in my body at the same time. Interestingly, he doesn't feel that the action of riba on blood is necessarily hemolytic in nature, although he wasn't able to do testing at the lowest point (if it happens again, I'm to go to him so they can test before treating so we can see what's really going on) - obviously, I'll come in a little earlier... You know, before ending up in a casket with a stake through my heart because someone mistook me for a vampire.
At any rate, he said that if at that point, it turned out to be true hemolytic anemia, there are other measures they can try to stop the destruction, even when the agent of hemolysis is a drug you are taking. But, we'd probably consult first before trying those because some of them involve steroids and other therapies not best tried without involving a hepC physician.
All - ok, so at least until we can get our heads wrapped around this, I spoke with my hematologist and he is ok'ing me on 40k 2x weekly on the epogen, as long as I don't let my blood become "too rich" - umm yeah. I'll try to reign that in, that richness of the blood thing. (snark)
He is very open to consulting with whomever we need in order to make the tx work and keep some blood in my body at the same time. Interestingly, he doesn't feel that the action of riba on blood is necessarily hemolytic in nature, although he wasn't able to do testing at the lowest point (if it happens again, I'm to go to him so they can test before treating so we can see what's really going on) - obviously, I'll come in a little earlier... You know, before ending up in a casket with a stake through my heart because someone mistook me for a vampire.
At any rate, he said that if at that point, it turned out to be true hemolytic anemia, there are other measures they can try to stop the destruction, even when the agent of hemolysis is a drug you are taking. But, we'd probably consult first before trying those because some of them involve steroids and other therapies not best tried without involving a hepC physician.
Thanks for the list. I am trying to get something set up now. Unfortunately, I don't feel all that well this afternoon.
I made a similar inquiry while on treatment.
According to my insurance company, as long as the doctor gaves an appropriate diagnosis code and paperwork, they didn't really care if the 'visit' was by phone or in person. This actually was news to one doctor's office (a hepatologist) who was under the impression that insurance would only cover a physical visit. Of course, different insurance companies have different policies, but always best to speak to a supervisor for any kind of question beyond what day it is :)
Best way to make these things work -- after getting the go-ahead from the specialists office and the insurance company -- is to get all the paperwork -- test results, etc, -- to the doctor ahead of time, and then set up a specific time for the phone "visit", just like if you were going to see the doctor. Of course, hopping on a plane is preferable where you get a face-to-face, but sometimes that isn't feasible.
Note that some doctors may balk at a direct phone consult (just you and the doctor) for a first visit, although I wouldn't rule it out. On the other hand, they consult with other doctors all the time on the phone, so working through your tx doctor or GP -- either as a doctor-to-doctor consult, or with you as part of the conference call -- is another way to go. Lots of options, and sometimes it's up to you, the patient, to figure out what is best for you and then sell it.
All the best,
-- Jim
According to my insurance company, as long as the doctor gaves an appropriate diagnosis code and paperwork, they didn't really care if the 'visit' was by phone or in person. This actually was news to one doctor's office (a hepatologist) who was under the impression that insurance would only cover a physical visit. Of course, different insurance companies have different policies, but always best to speak to a supervisor for any kind of question beyond what day it is :)
Best way to make these things work -- after getting the go-ahead from the specialists office and the insurance company -- is to get all the paperwork -- test results, etc, -- to the doctor ahead of time, and then set up a specific time for the phone "visit", just like if you were going to see the doctor. Of course, hopping on a plane is preferable where you get a face-to-face, but sometimes that isn't feasible.
Note that some doctors may balk at a direct phone consult (just you and the doctor) for a first visit, although I wouldn't rule it out. On the other hand, they consult with other doctors all the time on the phone, so working through your tx doctor or GP -- either as a doctor-to-doctor consult, or with you as part of the conference call -- is another way to go. Lots of options, and sometimes it's up to you, the patient, to figure out what is best for you and then sell it.
All the best,
-- Jim
Here a few names for a phone consult. They are among the best liver specialists (hepatologists) in the country.
1. Dr. Ira Jacobsberg, Cornell, NYC
2. Dr. Douglas Dieterich, Mount Sinai, NYC
3. Dr. Nezam Afdhal, Beth Israel, Boston
4. Dr. Eugene Schiff, U of Miami, FL
5. Dr. John John Mchutchison, Duram, NC
6. Dr. Mitchell L. Shiffman, Richmond, Virginia
7. Dr. Donald M. Jensen, University of Chicago
1. Dr. Ira Jacobsberg, Cornell, NYC
2. Dr. Douglas Dieterich, Mount Sinai, NYC
3. Dr. Nezam Afdhal, Beth Israel, Boston
4. Dr. Eugene Schiff, U of Miami, FL
5. Dr. John John Mchutchison, Duram, NC
6. Dr. Mitchell L. Shiffman, Richmond, Virginia
7. Dr. Donald M. Jensen, University of Chicago
I have a gastro. His center has 400 hepC patients right now. I am going to ask that we get a hepa in consult too.
Not to be redundant, not to be redundant :) but do you have a liver specialist (hepatologist) in on the call? By HCV standards, the acute studies are sparse, with protocols seemingly unclear -- and probably only those in the field treating a fair number of acutes (hepatologists in large, teaching hospitals) would have the anecdotal/clinical experience to advise on the riba issue. BTW I was really looking forward to the Swedish trip, with all sorts of fantasies re the lady doctors who run all the riba studies there. Oh, well :)
-- Jim
-- Jim
Mike - That's a very interesting article. Makes sense too in many ways.
mremeet - there was no doubt I was still in an acute phase when I began treating. I knew when I got HCV and actually had the back up negative tests to prove it (Had negative tests quarterly last year and in December 2006, April 2007 and June 21, 2007). Exposed on 7-1-07. I got acutely ill fast after exposure, within a month or so, I griped and belly ached about how sick I was on here a good deal while I was waiting for my meds to come in.
And yep. I know all about everything that can be hiding in the blood. There really was just no choice last night though. Now I'll get to screen for all the little blood borne lovelies quarterly for another year. And of course, that is certainly not the only risk from transfusions. You deposit additional iron stores in your body. You risk actual blood infection, antibodies, etc. A lot can go wrong. They don't make a decision to transfuse lightly. And thanks - about the pretty thing. I don't see any reason to jump out of perfectly good planes and choppers though.
Jim - Don't think I'm going to Sweden anytime soon, however, I am going to print out the studies and some others I have and I have a call in to everyone now.
mremeet - there was no doubt I was still in an acute phase when I began treating. I knew when I got HCV and actually had the back up negative tests to prove it (Had negative tests quarterly last year and in December 2006, April 2007 and June 21, 2007). Exposed on 7-1-07. I got acutely ill fast after exposure, within a month or so, I griped and belly ached about how sick I was on here a good deal while I was waiting for my meds to come in.
And yep. I know all about everything that can be hiding in the blood. There really was just no choice last night though. Now I'll get to screen for all the little blood borne lovelies quarterly for another year. And of course, that is certainly not the only risk from transfusions. You deposit additional iron stores in your body. You risk actual blood infection, antibodies, etc. A lot can go wrong. They don't make a decision to transfuse lightly. And thanks - about the pretty thing. I don't see any reason to jump out of perfectly good planes and choppers though.
Jim - Don't think I'm going to Sweden anytime soon, however, I am going to print out the studies and some others I have and I have a call in to everyone now.
ala: Obviously, I have only a small window to build a protocol with a suggested way of approaching this, including what the alternate plans will be in certain eventualities.
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I think this is key. Coming up with the most reasonable plan and backups. If it were me, I'd order up the studies from the other thread, print them out, look through them, and fax them to all doctors concerned for discussion. You can't keep getting transfusions every four weeks and therefore you should really get straight whether the riba is really necessary for an acute, and if so, how much is necessary. BTW they do plasma riba testing in Sweden using HPLC (high performance liquid chromography). I had planned on flying over to have mine tested but I flew to the ER instead (with anemia) and went another route :)
-- Jim
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I think this is key. Coming up with the most reasonable plan and backups. If it were me, I'd order up the studies from the other thread, print them out, look through them, and fax them to all doctors concerned for discussion. You can't keep getting transfusions every four weeks and therefore you should really get straight whether the riba is really necessary for an acute, and if so, how much is necessary. BTW they do plasma riba testing in Sweden using HPLC (high performance liquid chromography). I had planned on flying over to have mine tested but I flew to the ER instead (with anemia) and went another route :)
-- Jim
Sorry to hear your hgb has tanked so badly, but congrats a zillion times over on the 4 week UND. That's quite an accomplishment for a geno 1, it almost implies you may still be in an acute-ish phase (which is good). And I'm real sorry to hear about how you contracted HCV, that's just awful. I hope you do make it to testify and the person who did that to you gets what's coming to him. As far as transfusions go be careful with that. I was infected with HCV way back in 1983 after I received a transfusion (vehicular trauma). Back then HCV had yet to be identified/discovered so it was not screened in the blood supply (neither was HIV). But it certainly was in the blood supply, and I ended up getting it this way. Today, undoubtably there are other bloodborne pathogens that have yet to be identified (nor screened in the blood supply). Everytime you receive blood from someone else, even if it's been properly screened against what is known about today (i.e. HBV,HIV,HCV etc etc), that does not guarantee you're getting truly pristine "packed cells". Not trying to scare you, but if there's anyway to minimize the amount of tranfused blood you receive the better. Take care of yourself in the meantime, and congrats again on the stupendous 4 wk UND!
PS>> You're very pretty by the way. Maybe you and pln (pam) and foreseegood can get some kind of anti-HCV Charlie's Angels thing going on??? Just a thought for when you're feeling well enough to jump out of a helicopter with guns blazing again ;-)
PS>> You're very pretty by the way. Maybe you and pln (pam) and foreseegood can get some kind of anti-HCV Charlie's Angels thing going on??? Just a thought for when you're feeling well enough to jump out of a helicopter with guns blazing again ;-)
My guess is that high-performance liquid chromatography after solid-phase extraction in trough samples is probably expensive and not widely available. I know I never had my plasma level measured and it seemed as though I got every test imaginable.
From: Journal of Viral Hepatitis
Volume 11 Issue 1 Page 84-87, January 2004
"Summary. Ribavirin in combination with interferon alpha-2 or pegylated interferon is the standard treatment for chronic hepatitis C. The current dosage recommendations for ribavirin are based on body weight (bw). Ribavirin is mainly eliminated by the kidneys and we have recently shown that ribavirin plasma concentrations are determined primarily by renal function. It is therefore reasonable to hypothesize that side-effects of ribavirin, i.e. anaemia, should be more closely related to plasma concentrations of ribavirin than to the dose per kg bw. A total of 108 consecutive patients eligible for treatment of chronic hepatitis C were studied. Ribavirin concentrations in plasma were measured by high-performance liquid chromatography (HPLC)-UV after solid-phase extraction in trough samples taken 4, 8 and 12 weeks after the treatment commenced. A total of 213 samples were obtained and the change in the haemoglobin level and the creatinine concentration was measured in addition to ribavirin. The dose of ribavirin per kg bw did not correlate with the drop in haemoglobin level induced by ribavirin. The concentration of ribavirin was non-linearly related to the drop in the haemoglobin level as revealed by fitting a standard Hill equation type dose–response curve. The half maximal drop in haemoglobin was obtained at 4.4 μm. The results from this study suggest that the anaemia induced by ribavirin depends primarily on the concentration of ribavirin, and not on the dose per kg bw. This lends further support to the idea that ribavirin should be dosed according to renal function."
Mike
From: Journal of Viral Hepatitis
Volume 11 Issue 1 Page 84-87, January 2004
"Summary. Ribavirin in combination with interferon alpha-2 or pegylated interferon is the standard treatment for chronic hepatitis C. The current dosage recommendations for ribavirin are based on body weight (bw). Ribavirin is mainly eliminated by the kidneys and we have recently shown that ribavirin plasma concentrations are determined primarily by renal function. It is therefore reasonable to hypothesize that side-effects of ribavirin, i.e. anaemia, should be more closely related to plasma concentrations of ribavirin than to the dose per kg bw. A total of 108 consecutive patients eligible for treatment of chronic hepatitis C were studied. Ribavirin concentrations in plasma were measured by high-performance liquid chromatography (HPLC)-UV after solid-phase extraction in trough samples taken 4, 8 and 12 weeks after the treatment commenced. A total of 213 samples were obtained and the change in the haemoglobin level and the creatinine concentration was measured in addition to ribavirin. The dose of ribavirin per kg bw did not correlate with the drop in haemoglobin level induced by ribavirin. The concentration of ribavirin was non-linearly related to the drop in the haemoglobin level as revealed by fitting a standard Hill equation type dose–response curve. The half maximal drop in haemoglobin was obtained at 4.4 μm. The results from this study suggest that the anaemia induced by ribavirin depends primarily on the concentration of ribavirin, and not on the dose per kg bw. This lends further support to the idea that ribavirin should be dosed according to renal function."
Mike
When I first started taking epogen it caused a lot of flu like symptoms that gradually went away. But, everyone experiences different side effects on it. I don't think you are the first to have bone pain.
Actually, why COULDN'T we get plasma levels on the ribavirin? Surely it could be done.
Actually, why COULDN'T we get plasma levels on the ribavirin? Surely it could be done.
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