[Ellen McDonough]

Hi Jennifer,

I have severe AA and not PNH but have done some reading about PNH.Red blood cell transfusions can cause iron overload and with PNH can overload the kidneys with iron.Maybe that is why the doctor was being judicious with transfusions of red blood cells. I think PNH affects the kidneys quite alot. If he has moderate AA he may want to hold off on transfusions for now.
As for Cyclosporin I don't know what the status is for or not using. It is rough on the kidneys as well.I am weaning off Cyclosporin[just started] after 2 years of Cyclosporin therapy.It has some nasty side effects.I have noted my kidney function labs are moderately affected and have paresthesias.It has caused high blood pressure and dizziness and when I was at a higher dose had some"foggy thinking" until the dose was lowered.I was diagnosed at age 49 years and always was very fit and athletic and "healthy". It is an adjustment to have limitations placed because of this illness. I still "workout-swim,hike, bike ,spinning- but at my own pace now.I am short of breath ,at times dizzy and have heart racing episodes with just climbing the stairs in my home but with a short rest I am ok.
I too have had the privilege of seeing Dr Young at the NIH.He is such an expert with this disease.
When I was being transfused I unfortunately built antigens to the platelets[which can happen with RBC transfusions also.I then had to have the blood bank find platelet donors who matched me to donate .There are risks involved with transfusions--iron overload ,antigen formation etc.
I wish you and your husband hope and health.He is lucky to have you as an advocate!
I would love to help if I can.
Take care ,Ellen McDonough