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Old Wed Mar 22, 2017, 02:18 PM
kirag1964 kirag1964 is offline
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Join Date: Mar 2017
Location: Philadelphia
Posts: 20
Saw the doctor yesterday and she was amazing! Knowledgeable, patient and caring. I really liked her and feel extremely grateful to live just 25 minutes from an expert on bone marrow failure. I am definitely in good hands. And to those of you that said it was worthwhile to wait for someone who understands these diseases - you were so right! Like night and day!

She thinks it is very likely AA - not only am I pancytopenic, but my marrow is very hypocellular, and much of what is there is lymphocytes not stem cells. It appears to have developed over at least the past 15 months, because all 3 of blood cell numbers (but not my Hg) were slightly low at my previous physical in 12/2015, but not low enough for anyone to be concerned.

Since AA is a diagnosis of exclusion, she is checking for a bunch of other things to rule them out. They took 22 vials of blood from me yesterday (22!!!!). I will go back to see her in a few weeks and then she will likely be able to give me a formal diagnosis and we can make some treatment decisions.

The really good news - I do not have severe AA at the moment. Even though my WBC count is low, that is mostly due to low monocytes - my neutrophils are holding their own, and are at a normal level. However, since this has been slowly getting worse for the past 15 months she thinks it's just a matter of time before my ANC starts getting worse as well. So, once we confirm the diagnosis she doesn't just want to watch and wait. But since I "only" have moderate AA right now, and since for the past few weeks I have been stable (low but stable!), we have time to make sure of the diagnosis and discuss my treatment options.

And I am getting a transfusion tomorrow so will get my RBCs and Hg back up for at least a few weeks! I am SO looking forward to not feeling awful for a while.

Thanks for the advice and handholding through this initial process. I'm sure I'll be back with lots of questions, but it has made a huge difference to have a group I can turn to with this initial uncertainty.
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