Hey Laura,
I too am at a loss for words. Of all the BMT journeys we have read, I just can't recall hearing someone speak of such diverse life changing symptoms. To be, in essence, severely allergic to light is hard to comprehend. And the heat intolerance, well, I just cannot imagine.
If their should be quality of life awards handed out for extreme patience and tenacity and perserverence, you would be enjoying the best possible life right now - you deserve it.
Something's got to go your way at some point. Maybe just like we know GVH can just 'burn out', so too could this, with any luck?
Just like Marlene suggested, are your estrogen and progesterone levels ok given the extreme heat intolerance?
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Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.
www.caringbridge.org/visit/evanmacneil
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