OK. I spoke with Rory's nephrologist, who told me that she had authorized the medication and PICC line, but it was the infusion center who had started this mess. They are accusing us of "interrupting the care of the other patients". They'd better have really good documentation on this. We haven't even yelled at them, or said one bad thing to them. "Female manager" (name withheld) in the infustion center is the one who lied to me, pure and simple, and I intend to make sure that her supervisors and the State of California are aware of this. I will file a formal grievance against her for this, and for endangering my husband's life as a result of her slanderous accusations.
So, we are looking for legal representation at this point and anyone with regulatory authority to stop them from this madness. I called the Sacramento Bar Association, who sent me to Legal Services, who sent me to the Legal Center for the Elderly and Disabled, who sent me to the Health Rights Hotline, who sent me to Lumetra, who sent me to the Department of Health Services. Keep in mind, my ultimate goal is just to get them to give him this medication.
Note: Rory is already experiencing more hardening (calciphylaxis) of his abdomen at this point, and more pain, without the medication. If dialysis was helping this problem, this would not be happening. By failing to continue to adminster the sodium thiosulfate, they have proven that the sodium thiosulfate was working. While we "settled" for half-dose before, I think we will now request the full 25gram dose three times per week, since this setback.
Update: Kaiser's "Expedited Review" department stated to me that this was not something that required their assistance and they have referred it to the standard 2-week review process. RORY MAY SUFFER PERMANENT DAMAGE DUE TO THIS UNREASONABLE WAIT FOR AN URGENT PROBLEM NOR DOES HE DESERVE TO SUFFER IN PAIN WHILE THEY TAKE THEIR TIME! They claimed that calciphylaxis is a chronic problem. This sure came on acutely enough. As soon as I asked to provide the information that they told me I would be able to, she said, "Goodbye Mrs. Roberts" and refused to talk to me further. I told her I was reporting this to DMHC.
So, we are looking for legal representation at this point and anyone with regulatory authority to stop them from this madness. I called the Sacramento Bar Association, who sent me to Legal Services, who sent me to the Legal Center for the Elderly and Disabled, who sent me to the Health Rights Hotline, who sent me to Lumetra, who sent me to the Department of Health Services. Keep in mind, my ultimate goal is just to get them to give him this medication.
Note: Rory is already experiencing more hardening (calciphylaxis) of his abdomen at this point, and more pain, without the medication. If dialysis was helping this problem, this would not be happening. By failing to continue to adminster the sodium thiosulfate, they have proven that the sodium thiosulfate was working. While we "settled" for half-dose before, I think we will now request the full 25gram dose three times per week, since this setback.
Update: Kaiser's "Expedited Review" department stated to me that this was not something that required their assistance and they have referred it to the standard 2-week review process. RORY MAY SUFFER PERMANENT DAMAGE DUE TO THIS UNREASONABLE WAIT FOR AN URGENT PROBLEM NOR DOES HE DESERVE TO SUFFER IN PAIN WHILE THEY TAKE THEIR TIME! They claimed that calciphylaxis is a chronic problem. This sure came on acutely enough. As soon as I asked to provide the information that they told me I would be able to, she said, "Goodbye Mrs. Roberts" and refused to talk to me further. I told her I was reporting this to DMHC.
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