This morning I got a call from a lady in Chicago. She is arranging the first ever familial amyloidosis convention in the US--probably anywhere. It is in Chicago on Halloween weekend. The doctor that recommended the transplant as well as a doctor from Indiana University will be there to speak very specifically on the fibrogen non TTR amyloidosis type that I have.
So what are the odds of finding about this two weeks after I am diagnosed?
Brian had a Southwest voucher that he generously offered to us. The plan was for Lon to go and pick their brains for the genetic aspect. Then I saw the name of the doctor that suggested the transplant, so our new strategy is to divide and conquer. We will both be going for different purposes. This is really a last minute trip. We'll only be gone for a few days, but hope to be much more educated.
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Our prayers and love are with you!
ReplyDeleteWow, this is great!
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