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It's a long road
Aloha Melissa,
I read your message and I felt like you were reading my mind.
My own life goes from the highs after a red blood transfusion, when I feel energetic and mentally sharp, to the lows just before a transfusion, when really nothing feels very good, and all I want to do is sleep. And I really have to watch my irritability, especially around my family.
Ruth's point about looking ok but not being all that ok is spot on, too. I vacillate between recognizing that this disease DOES limit me to chastizing myself for letting AA run my life. I am not "out" to most people I work with about this, so a lot of the time I feel like I'd like to tell people why I am not always all there; but I hate to make excuses, and I don't want pity.
My first treatment was very successful for about 6 months, then I relapsed. Let me tell you, when my hgb was up to 12, I felt like SUPERMAN! Like you, I am facing the next round of treatment.
Have you considered a clinical trial at NIH??? My counts are not low enough to qualify, but yours might be. I know I'd feel a lot more confident about the second round if it was at NIH.
Bill
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Male, 56, dx Nov2006 VSAA (BMA:0%). Responded to ATG/CsA/Prednisone/Neupogen Dec 2006, but relapsed in June 2007. Counts are responding to using CsA 200mg bid alone since Jun 2008. Last PRBC tx: Jul 2008.
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