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Hi Amy,
I use to transfuse when my hemoglobin dropped below 7.8. That's when I would start getting side effects like shakiness.
I remember that I was also concerned about organ damage from letting my counts go low, as I was still fairly active. My doctor said that I wasn't damaging my organs.
He did not order the transfusions when my counts were below a magic number, it was all dependent on my requests when I became symptomatic.
I hope this helps.
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58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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