|
Hi Andy. We are all sorry to hear that you may have PNH, but as you know modern treatments enable many patients to live reasonably normal lives. I am just curious as to whether or not your MDS is in remission or has it being controlled by meds? If you had MDS in the past, then you are accustomed to all of the testing and appointments associated w/ bone marrow failure diseases. Being a GP, you are aware of transplantation for some PNH patients, and there are a few of us here who have been successfully transplanted. I have many posts on this site regarding my experience, and I would be more than happy to answer your questions. Of course, me being a patient and you being a GP as well as a patient. I had never heard of PNH until I was diagnosed in 2011, and w/ the internet there are a lot of great resources I have used. We all wish you luck in your treatment.
Mario
__________________
MARIO, 52, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD. CURRENTLY TAKING JAKAFI FOR GVHD.
|