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@gingerw

@faithwalker007 @jesfactsmon @bustrbrwn22 @lioness There is one documented case of a transplant for a patient with this condition. I am not in pain, so there is no opioid or pain med issue.
The hitch-in-the-git-along, for me, presents an interesting dilemma. I also have multiple myeloma, and start treatment next month [we were waiting for me to get the Covid vaccine doses before starting treatment]. I cannot be a "normal patient", gotta be a challenge. Hey, I have been a rebel all my life, why wouldn't it be different now?

I cannot be considered for a transplant until after a round of chemo, a Stem Cell Transplant, then wait at least a year. My sister bless her heart, offered to be evaluated as a living donor, but now it looks like it would be 3 years before a transplant opportunity. She will be 77 then. My case is unusual, as the mm is not the cause of the kidney issue, or vice versa. It seems all my health concerns are autoimmune, so my body is quite literally at war with itself. I am blessed to have a great care team, and hope my situation may lead to answers for someone else.
Ginger

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Replies to "@faithwalker007 @jesfactsmon @bustrbrwn22 @lioness There is one documented case of a transplant for a patient with..."

You are definitely at war. Good thing you aren’t fighting this war alone! May I use your case for as an example of asked for one at the RDLA meeting in DC at the end of the month?

All rare cases are “unusual” or they wouldn’t be rare! That’s why they are not normally seen and have “orphan” drugs and we’re supposed to be eligible for drugs in the final stages of testing, etc.
Not because we’re the norm but because we’re not. To be treated as if we are and be put in checklists as if we are is contrary to the very thing RARE disease protocol means.