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Old Tue Jul 30, 2019, 01:42 PM
GoodDay5150 GoodDay5150 is offline
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Join Date: Sep 2014
Location: Centennial, CO
Posts: 130
Hey Cologne74, I have never been to Europe but it is on my list. If you search my user name you will find many stories regarding my diagnosis, treatment, and recovery after a stem cell transplant for PNH. Obviously diff. than AA, but similar in many respects. A lot of patients develop PNH after having AA and some people have both at the same time.
The US health care system is diff than yours so I had dr's from my insurance company that work in conjunction w/ the specialty clinic that is affiliated w/ a hospital bcse neither that company, and my insurance company I have now does the actual transplant. Anyway, it was decided that bcse of my severe symptoms and my age that I was a good candidate for a transplant. That decision was based on the opinions of multiple dr's and the protocol used was partially developed by dr's at the specialty clinic that I go to. The drug used to treat PNH does not cure the disease, and I was never administered that drug b4 the actual procedure.
This is all scary stuff I know and different medical professionals have different opinions. I would ask a lot of questions and you can also get info from the AA/MDS organization. https://www.aamds.org/

we all wish you luck in your treatment



Mario
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MARIO, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.
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