Thread: Tired
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Old Tue Jun 19, 2018, 08:23 PM
Susan Susan is offline
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Join Date: Sep 2003
Location: Chicago, Il
Posts: 101
Tired

GoodDay,
Did you have it at "The Hutch" in Seattle? That's where I went for my consult. Great place. I suppose you went to Denver. When I went they only had full (extreme) conditioning for PNH, the same as what MDS were getting.

One young consultant pulled me aside and said No! Very toxic, PNHers don't need that. They are like AA patients, should get and will in the future get the AA regimen for PNH. Thank goodness for advancements. I would have been too wary to get one personally though unless my life was in danger, even with a mini.

How are you, doing alright? Back to work? Enjoy your week.

Susan
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AA/PNH Dx 1998, Warfarin, Soliris
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