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Old Mon Sep 4, 2017, 11:56 AM
Callie Callie is offline
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Join Date: Jan 2014
Location: Fayetteville, NC
Posts: 25
Dad was always very active until the last 8 months - golf, driving cross country with me and my animals, projects around the house, etc. (in fact, he was planning on coming out here this summer to build a deck on my house). While he definitely experienced more fatigue after transplant (everyone finds their "new normal"), he was still able to do all of those things. Last October, he started having pain in his shoulder, then it moved to his hips. It became more frequent and more intense as time went on (we couldn't find the source/reason, but he also wouldn't tell the doctors just how bad he felt, so they really didn't start with the MRIs, PETscan, xrays until the beginning of April, at the same time his numbers started plummeting and blasts increased). It was this pain that started preventing him from doing things, not low blood numbers. He never needed any transfusions (except for one platelet transfusion during transplant) until he went in for induction chemo for AML relapse in April, at which time he started receiving transfusions regularly, as we hoped his body would start producing on its own. He noticed he felt significantly more tired when his platelets were low and his hemoglobin dropped below 10 (many seem to feel okay down to 8ish). During the first 100 days after transplant, when we were living in the apartment near the hospital, we played a lot of cards and went on short walks.

I wish I could help you more than this! This forum became such a huge part of my dad's and my life over this time. It's full of incredibly knowledgeable people going through similar situations.
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Daughter of Bailie (diagnosed RAEB-2 11/13; transplant 08/14; relapse with Ph+ AML 04/15; remission until 04/17; DLI 06/17; passed away 07/11/17 at Day+1059)...the best dad a daughter could have...
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