Today we went to this support group. There were 26 people there and 13 had amyloidosis. All except me and two others were the primary type. There was one man who had had it for ten years, and the rest had it from very recently diagnosed (me) to maybe five years. There were at least three heart transplants and a few other transplants. They threw around jargon that almost seemed like a foreign language. They all knew the doctors in the US who treat amyloidosis. Despite all of the bad news and problems, it was a very upbeat and positive meeting. Everyone was so suppotive of one another, with positive attitudes.
I feel so sorry for the suffering and sadness that these people are going through. I think with the kind I have, I will avoid most of these complications. I hope I can keep things in perspective.
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I'm just now getting caught up on the blog. Thank you for all of the information. I'm so impressed with how knowledgeable you and Lon are and that you've done so much homework on your own.
ReplyDeleteLOOK AT YOU!!! See facing reality and then choosing to live in hope. REJOICING IN HOPE.
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