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[IP] kidney failure



Hi ,
My Dad, type 1 for 45 years or so, had a kidney transplant 12 years ago.
We recently discovered the Cyclosporin he's been on for anti rejection
has scarred the kidney, my sister's, so it is only one third usable. We
have discovered that the medical community has known for the last 5
years that Cyclosporin with long term use scars kidneys. My father, not
the litigious type, wrote a letter to the transplant center requesting
an explanation and that they correct their protocol so others do not
have the same experience. For 12 years he had extensive blood work done
every 3 months and had it sent to the transplant center. They would
adjust his medications accordingly. His new nephrologist, at the Mayo,
couldn't believe the high dose of cyclosporin he was on. When
confronted, the transplant center via telephone, has told him they were
not culpable. It was his primary care physician's responsibility to
inform him of the risks of his drugs and adjust accordingly. Like they'd
accept a non specialist messing with their orders!   When he pushed for
an answer about why they didn't act when his Creatinine was rising, she
replied, "Oh. I missed that. I have 80 charts a day that I read." They
are not reducing cyclosporin in their long-term transplant patients. The
short story is, we're angry. We want to make sure this medication is
used safely to do no further harm. My dad is my example of how to live
with diabetes, not BE diabetes. He's done everything in his power to
manage his diabetes.  Does anyone have advise or input? I plan to
contact the ADA. And please if you're on cyclosporin, make sure your
health care professionals are aware of this problem.  As pumpers you
know, we fight to hard to have incompetence compromise our quality of
life. Lynn
.
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