[GaryV]

I searched the forums and have not found my question answered clearly.

Fall 2009 I have had to start RBC transfusions. I asked my doctor and nurse, who are very good, other than they don't really answer questions.

1. "Anemia with symptoms" is their standard for a transfusion. I had to go to the internet to learn the symptoms. I started reporting the symptoms (heart palpitations, chest pains, heaviness in limbs, pain in jugulars), and no tx ordered. I shut up and waited, putting up with pain. I learned that HGB<8.0 is their trigger regardless of my symptoms. My symptoms fluctuate widely. I can feel worse at HGB 8.6 than HGB 7.5. What to do?

2. Transfusions don't hold up my HGB. Is that common? Often 2 units increase only 1 g/DL and drop back down in 2 weeks.

3. For about a week after a transfusion, I sleep nearly all the time. Not the case, before the transfusion. What might that be about?

4. What happens if I stop getting transfusions? Heart attack seems likely. What about general organ failure?

I have been on Aranesp, 200 mg, injections every two weeks. MD doesn't want to increase it, but it no longer keeps my HGB up.

My PLT 19,000. Subfebrile tempurature and night sweats. Dr. said probably related to low PLT. No bleeding yet.