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Old Tue Mar 14, 2017, 01:51 PM
kirag1964 kirag1964 is offline
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Join Date: Mar 2017
Location: Philadelphia
Posts: 20
Quote:
Originally Posted by Marlene View Post
Is there a reason why you are not getting a red cell transfusion at this point. Your HGB is pretty low. Most have a transfusion threshold of 8. Getting your red cells up will help a lot.
Quote:
Originally Posted by Marlene View Post
It's good see a doctor who has experience with SAA. Very few hematologist ever see SAA in their lifetime and experience with this disease is a must.
What my doctor told me is that they base transfusions on symptoms, rather than numbers. I've been relatively asymptomatic for someone with such severe anemia (as I said I am generally very healthy and take good care of myself), although the anemia symptoms have definitely gotten worse the longer I've been in the 7's. I can feel how hard my heart is working. I also think I may have downplayed things a bit. I have good days and bad days, and I try to focus on the good days - but that may mean I am not letting him know how awful I feel sometimes.

He also said that they don't generally treat AA with transfusions, which I believe is incorrect. But a good reason to be seeing someone else ASAP! The doctor I am being transferred to is actually one of only 4 doctors in PA who is listed on the MDS/AA website, so that is very good news. I just hope that I can get in there soon.

At this point I don't think my current hematologist wants to do anything with me at all. He answers my questions, and he will continue to monitor my CBCs until I am with the new doctor, but I get the impression he is nervous about treating me since he is so unfamiliar with this. He feels out of his depth, and doesn't want to "experiment" on me. He said the last time he saw an AA patient was when he was a resident - and he's in his 60s! This is at a very busy and well-regarded suburban hospital near Philadelphia.
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