Hi Susan, a few different PNH specialists I have met after my transplant advised me of the risks involved, but it's too late now!! I of course have told my transplant doctor what other dr's have said and she said that she would do everything exactly the same. My clone size was abt 95%, and after my transplant my doctor said that a transplant was the best choice because I was still relatively young and healthy, and that the risks involved increase as you get older. Another doctor told me that your entire skeletal structure is weakened following the procedure, but once again, too late now. I am part of this study. Probably the only thing I will ever be famous for!! There are a few other studies w/ similar positive outcomes.
Mario
https://oncology.by/uplds/ASH/MAC/we...aper44763.html