|
Hi Jen. I was diagnosed w/ PNH in 2011 and had a stem cell transplant abt 6 months later. I had symptoms off and on for a long time previous to that but I was never diagnosed until they became so severe that I could no longer ignore them. I had debilitating fatigue by that time, and I had a hard time doing basic tasks like work, taking care of a house, etc. My doctors and medical staff have all been great, and my experience overall has been positive. I actually just had a follow up visit a few days ago, and I am doing well. However, I do have some GVHD, I had shingles last Fall, and I get some bad colds every now and then that hang on, so there have been some issues along the way. I will be more than happy to answer any questions that you have.
Mario
__________________
MARIO, 52, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD. CURRENTLY TAKING JAKAFI FOR GVHD.
|