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Hi Jen. I had a power port for post transplant procedures. I was going to get Soliris before my transplant, but that doctor changed his mind. I have told a few diff PNH experts about my transplant and they both said that they would not have transplanted me, but instead given me Soliris. One of these doctors was going to transplant a patient who also had AA, so I think that was her reasoning. AA and PNH go together in some instances, and some people will have AA that is cured by drugs and will then develop PNH later in life. Yes, it is a lot to comprehend. I sort of freaked out for a few days after my diagnosis, but I recovered quickly from that. I have quite a few posts here regarding my experiences, and it's always interesting to meet new PNH peeps bcse it is so rare, as you probably know.
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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