I will start by apologizing if this is too lengthy. This is the first time I've been on a site like this. I was first diagnosed with ITP on feb 26. I went to the er because I had red spots and random bruises everywhere. I also had blood coming out on my face where acne had been and what seemed to be menstrual bleeding which seemed impossible since I had a hysterectomy last year (I am 36yrs old). My platelet count was 2k and they immediately admitted me to the ICU. I received platelet transfusions for the first few days and was put on prednisone. Then I was givin IVig treatments for 8 days. When my count reached 150k (14 days total) they released me. A couple of hours after I got home I had a terrible headache. Since my dr told me not to take Tylenol or NSAIDs for fear it would drop my count I just suffered through the headache....bad idea. The 2nd day home I could barely open my eyes and my head was killing me. When I looked in the mirror my skin and eyes were completely yellow. Back to the ER. I am one of the 3 people ever to have a reaction to IVig. I ended up with asymptomatic meningitis and hemolytic anemia. I don't remember anything really from beginning of march to end of April. I was in so much pain that they had to keep my sedated. At one point in April all of my organs started to fail except for my heart and brain. I was on dialysis, hemodialysis, plasmapheresis, rituxin, prednisone and Solaris. My hemoglobin had dropped to 1.8. When I tell other drs this # they usually tell me I must be mistaken since I would be dead if my #'s got that low. I pull out my medical records and watch the shock on their faces. My family was told to say their goodbyes. I just have to say that i am convinced that my hematologist is a modern day wizard of oz. After 3 months in the hospital, 74 blood transfusions, 63 platelet transfusions and numerous meds I was released in time for mothers day. I lost all muscle and fat (42lbs) in that 3 months along with my ability to walk. I finally got to ditch the wheelchair a few weeks ago!!! My #'s as of today are pretty good. Platelets 385k and hemoglobin 11.2. But....I am terrified everyday of this happening to me again. Because of the illness I developed a heart condition, a celiac artery aneurysm, iron overload from the transfusions and my kidneys only work at 50%. I am a wife and a mother of 4.
