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Hi Jennifer,
Welcome to the world of "watch and wait". These diseases, even when treating, require us to watch and wait.
At what point does your husband get red cell transfusions? John threshold was a hgb of 8. Some need it sooner and you husband may need to set his higher, maybe at 9.
I would also look at his some of his nutritional status. B12 should be at least 500. I'm sure they checked it but, many doctors feel a low normal B12 is OK. But your husband, depending on how much the PNH is destroying, will have a higher demand for blood building nutrients. So make sure they checked his B12, folate, B6, copper, zinc and iron. And again, if they haven't already done so, get his testosterone checked. Finally, get copies of these results and all future results.
Since he's not at point needing treatment, this would be a good time to find out about all the options. I would suggest getting another opinion from Dr. Brodsky at Johns Hopkins.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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