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Old Tue May 23, 2017, 12:11 PM
GoodDay5150 GoodDay5150 is offline
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Join Date: Sep 2014
Location: Centennial, CO
Posts: 150
Hi Meri. With the reduced intensity conditioning that I had, I was not that sick before or after my transplant. I lost abt 10 lbs or so in that 2 week period. Just abt everything tasted strange, and you (I), really don't feel like eating regardless. At least that's how I was. I was more dizzy than anything, but that went away within a few days. As far as follow ups go, the clinic that I went to as well as other clinics in the US want you to stay close by for at least a few months after your transplant. Obviously you will have frequent check ups and med changes afterwards, 2-3 a week and sometimes more, but also in case of a bad infection, GVHD flare up, etc, so that a specialist can advise quickly.
I was sort of nervous/ scared abt the whole ordeal, but as I have stated on this blog before, I was so sick for so long, I was more than ready to be cured! I was not treated w/ any drugs before my transplant, w/ the exception of blood thinners and iron tablets, so it was all new to me. One dr was going to treat me w/ Soliris after I was diagnosed but then changed his mind. Maybe he thought that I could tough it out a few months more before my transplant, and Soliris can make you more succ. to meningitis and some other bad things. He had told me abt one of his few patients w/ PNH who was going to be a part of the clinical trial for the drug, but she had moved away and he did not know her outcome. I have actually met this woman at a PNH conference and she is indeed being treated w/ Soliris.
I was not advised what would be done in my situation if there was an issue w/ relapse, so I can't really speak to that. With that, in respect to transplants for PNH, w/ the technology being so good, your chances of a relapse are pretty slim. You are more likely to succumb to GVHD or an infection. The nurse coordinator at my transplant center sd that I had the absolute best match poss, and so far so good. I would very much like to meet my donor, but I have never heard back from him. Good luck and you seem to have a good attitude, so you should do well. Make sure you let us all know how you are doing.

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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