@meredithes Welcome to Mayo Clinic Connect! You will soon be contacted, via this site, by other members with helpful tips and suggestions. You were diagnosed at Mayo Clinic-that’s great! Have you thought about contacting the department where you were diagnosed and asking for help? Or contact the doctor directly through the portal? She ought to know that you are frequently out of breath, feel dizzy, and the blood transfusions don’t seem to work very well. She may have some answers.
Can you send a message through the portal tomorrow?