Hi Amy,
Some time back, people were routinely transfused with packed red blood cells (prbcs) when their hgb dropped to 10. These days, as noted above, it's usually done when the patient experiences symptoms to a degree that they feel is uncomfortable. Some patients can go very low before significant discomfort is realized. With my hematologist, I would be the one to ask for a transfusion - after noting an increase in breathing rate following some simple task (like walking up the driveway). For me this usually occurred when I got below about 8.5 or so.
Regarding organ damage - one article I found indicates the necessity to drop to an hgb range of from 3 - 5 before any organ damage may occur. So you needn't be too concerned about that at this point. I was going to provide the link that noted this range, but at the moment I can't find it.
I don't remember procrit or ananesp affecting my counts much. Revlimid did lower my hgb so that more frequent transfusions were required. Other than that, none of the drugs gave me bad side effects.
Four cycles of dacogen worked great for me in that after 87 prbc transfusions, my hemoglobin stabilized around 10, so that I'm currently transfusion-free (for almost two years).
Best of luck in this struggle.
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Bill F, 74, MDS RA '05, procrit, aranesp, revlimid, no help; 87 transfusions, 4 cycles dacogen, then transfusion free ~2yrs, 4% blasts
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