Yesterday was "ok". He did need dilaudid to get through the day. Rory's HBS doctor was the one who originally ordered the sodium thiosulfate. He did order another dose, but I think he is afraid to go up against other docs (such as Rory's nephrologist). That's too bad, really. He was the one who saw the improvement in Rory, and saw how well Rory was feeling after getting the medication. Rory did get that one dose, however...
His nephrologist put in his chart that he was not to get the sodium thiosulfate. This is the same nephrologist who said she would not stand in our way. What the heck does she think she is doing now? I spoke with her today (on the phone, btw, not in person). I was amazed at how ignorant she is about all the nephrologists that are using sodium thiosulfate successfully to treat calciphylaxis. I also decided to ask her, since she is an "expert" in treating this, how many patients she has treated. She told me 10. I asked how many successfully. She wouldn't tell me. So, we have no choice but to assume that none of them survived.
So now, Rory is still not going to get it, even though it was clear that the drug is working. Instead, they would rather him be on heavy narcotics forever.
I did get his nephrologist to fax me the "letter" that according to her notes was sent out already (It is dated today). While we are in the process of the appeals procedure with Kaiser, they have up to 14 days to respond. GUYS! WAKE UP! YOU ARE TORTURING MY HUSBAND UNNECESSARILY OVER A DRUG THAT COSTS $20 per dose.
So, I need everyone who reads this to contact everyone in the media you can, contact your congressman and tell them that Kaiser is refusing to use a therapy that is being used all over this country, to treat a condition that is highly fatal. Print out a copy of the flyer we have here. If you are a physician in the State of California (or anywhere else for that matter) that is treating your calciphylaxis patients with sodium thiosulfate, contact me. If you have been treated with it, contact me. I need to find someone to help him immediately!
His nephrologist put in his chart that he was not to get the sodium thiosulfate. This is the same nephrologist who said she would not stand in our way. What the heck does she think she is doing now? I spoke with her today (on the phone, btw, not in person). I was amazed at how ignorant she is about all the nephrologists that are using sodium thiosulfate successfully to treat calciphylaxis. I also decided to ask her, since she is an "expert" in treating this, how many patients she has treated. She told me 10. I asked how many successfully. She wouldn't tell me. So, we have no choice but to assume that none of them survived.
So now, Rory is still not going to get it, even though it was clear that the drug is working. Instead, they would rather him be on heavy narcotics forever.
I did get his nephrologist to fax me the "letter" that according to her notes was sent out already (It is dated today). While we are in the process of the appeals procedure with Kaiser, they have up to 14 days to respond. GUYS! WAKE UP! YOU ARE TORTURING MY HUSBAND UNNECESSARILY OVER A DRUG THAT COSTS $20 per dose.
So, I need everyone who reads this to contact everyone in the media you can, contact your congressman and tell them that Kaiser is refusing to use a therapy that is being used all over this country, to treat a condition that is highly fatal. Print out a copy of the flyer we have here. If you are a physician in the State of California (or anywhere else for that matter) that is treating your calciphylaxis patients with sodium thiosulfate, contact me. If you have been treated with it, contact me. I need to find someone to help him immediately!
Labels: Family
posted by First On Scene EMS at Monday, July 19, 2004
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