Thread: Tired
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Old Thu Jun 28, 2018, 03:49 PM
GoodDay5150 GoodDay5150 is offline
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Join Date: Sep 2014
Location: Centennial, CO
Posts: 150
Hi Susan and all. Yes, my transplant was done at PSL in Denver. As I have prob stated in some previous posts, there was not a lot of discussion between myself and dr's b4 my treatment plan. I was told that I needed a transplant and that's what we did. I did not meet w/ any other dr's other than my HMO specialist and the doctor at the clinic who did my transplant and follow up care. In my non-medical opinion, but an EXPERT not by choice but because I had PNH, I doubt that Soliris would have helped me much simply because I was so sick for so long. Not all dr's are in agreement with transplants for patients such as myself. The pre treatment I had was abt 1/3 the level of radiation and chemo that would normally be used.
I have learned from personal experience that some people are just healthy and some are sick. Some people are treated/ cured of really bad diseases and some are not. Life isn't always fair... I was telling my neighbors dad abt me and my whole PNH thing; he is one of the lucky healthy people, at age 80. Which I pointed out to him!


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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