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Well, last week I got some frustrating news, which was that my hemoglobin at slipped to 7.2. Dr. J. quickly got me set up for a blood transfusion and two units later I was feeling much better. Thanks J-mo and Mom for keeping me company!
My blood work is also now showing all sorts of antibodies, which is actually good news (though it makes it hell for the blood bank to find a match for me) because it gives the doctors more hints as to what is really going on.
The newest theory is that I have vasculitis and we are planning a nerve biopsy, down by my ankle, in the next week or so to confirm. Vasculitis is treatable, but the treatment is very harsh, so we want to make sure before we do anything.
I’ll keep you all updated. While the drop in hemoglobin is frustrating, since I’d gone so long without a transfusion, I’m hopeful that the new symptoms will lead (finally!) to a conclusion to my days as Dr. J’s medical mystery.
Hi all-
Sorry I haven’t been updating but there hasn’t been much to say. I’m on the beginning of month three of my drug trial- and you usually see results between 3 and 6 months. So if this wonder drug is going to do the trick I should start feeling better very soon.
In other news my hemoglobin has been hovering between 8.5 and 9.5 which is pretty decent – so while I’m not feeling like running a marathon, and ironically my doctor keeps reminding me not to, I feel pretty good.
That’s all for now,
B
