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Thanks, Marlene. The nursing home actually asked at what point I would consider discontinuing transfusions. I was a bit shocked at the notion, I would not want to do something that would hasten her death, she would have to be much worse off, and I think it would be the congestive heart failure or other possible failures that would be the end for her.
Framing it as palliative care makes much sense to me. If her counts are kept from dropping, she will be more comfortable.
My mother was lucky in that her disease was fairly stable on the anemia meds for many years (Epogen/Neuopogen). (they've had to increase the dosages over time). I always considered transfusion dependence (not having had to deal with it) as a last resort effort that had many possible negative health consequences and not a long term solution. Not that my mother really has a long time left.
I know many here have probably been transfusion dependent for many years, but I am new to this aspect of the disease. And if it will make her comfortable in the time she has left, I suppose worrying about complications and side effects of transfusions is really only a small part of her overall situation.
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