Hi Hopeful. It looks like you were diag at the usual age as far as PNH goes. I only had PNH and not AA or MDS. My PNH was so severe that i doubt my body would have been able to handle and additional blood disorders. I had no meds or infusions of SOLIRIS b4 my transplant bcse the HMO specialist I had changed his mind abt treating me w/ SOLIRIS b4 my transplant. I did take blood thinners bcse of the risk of blood clots. I will always remember how freaked out a lot of the medical ppl were when they were reviewing my blood tests while going through my diagnosis. I sometimes politely remind older and relatively healthy peeps how fortunate they are bcse there are a lot of younger ppl who have gone through and are still going though serious health issues. Some dr's I have met and spoken to after being transplanted have told me that transplantation for PNH only patients is a risky move, but it's too late now! We all hope that your treatments go well.
Mario
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MARIO, 52, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD. CURRENTLY TAKING JAKAFI FOR GVHD.
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