Thread: Tired
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Old Mon Jun 18, 2018, 04:21 PM
GoodDay5150 GoodDay5150 is offline
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Join Date: Sep 2014
Location: Centennial, CO
Posts: 150
Hi Jen. I know how you feel, no pun intended. I was so incredibly wiped out from PNH, (which was never diagnosed until after I had the symptoms for years), that I was glad to know what was wrong w/ me. I was using power tools, climbing on ladders, and doing other potentially hazardous tasks all while working FT w/ basically no help from anyone. I'm REALLY lucky that I never injured myself, at least seriously, before being treated/ transplanted. I did shock myself bad one time, (my arm hurt for abt 2-3 weeks afterwards)and the dr. who treated me found some blood in my urine, but just thought that it was the result of being shocked. I can remember a few specific occasions where I had to force myself to do simple things like going to the bank or grocery store and then just rushing back home to rest/ sleep. Which of course does nothing because you are tired from PNH, not from lack of sleep. A few people would occasionally comment on how tired I looked/ was, but I just figured that it was me.... not an ultra rare blood disease. And at work during the day?! forget about it..... I would nod off ALL the time and some days I would literally be out cold if no one was around to wake me up. You did not ask but I would recommend that since the Soliris is not life changing for you that you consult w/ your doctor or another in regard to being transplanted. The HMO specialist that diagnosed me was going to treat me w/ Soliris but changed his mind because a transplant was going to be done regardless due to the severity of my disease, and he was unsure of its efficacy. I have met some patients w/ PNH who were legitimately disabled, so your thinking is not out of line. Some PNH experts do not like the idea of transplanting patients w/ PNH with the exception of extreme cases, or when PNH is combined w/ AA. I know of one such person and he is doing well. Good luck in your treatment and we are all here to help.

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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