My story

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.

Wow - that's quite a story! Sorry you had such a bad introduction to ITP. Did you have serious bleeding when you were admitted? Some of the things you mentioned are not quite normal protocol for ITP. Aseptic meningitis is not all that rare after IVIG; it happens occasionally.

I'm glad you found us and I'm glad you are doing better now.

Holy Cow girl! I am sooo sorry. I am a 30 year old with 6 kiddos. I know how scary that can be. I have to agree with Sandi, all those transfusions and body failure are not normal for ITP. I just got out of a week long stay in the hospital, I got one transfusion of platelets, 4 doses of ivig, and starting Rutaxin. I had a port put in because I have had to live with this since I was 12 and my veins are to scared up and failing. I too have the headaches that I want to die from. I was wondering if it was from the ivig. I keep telling nurses and doctors, but they don't seem to believe it is the medicines. How can they not know if a good percentage of people get them?! My headaches have finally eased up since starting a week ago. Believe me I know the pain, there is nothing and no one in the world who can understand the pain until they go through it. Hang in there, you are obviously strong or you wouldn't be here. As far as kids go, I have a lot of little ones. I have them crawl in bed with me and we do homework together, we try to have a movie night where we make a big bed on the floor in front of the TV and teh kids get to pick the video. The older ones sometimes get to play "chef" and make me food on a tray and run outside to pick a flower and everything. I read to them, we cloud watch and tell eachother what we see, heck I was so sick after chemo once, I had the kids gather around me in the bathroom and we took turns coloring the toilet water and watching it flush away; they LOVED IT! I try to find things to do with them and be close and snuggle (because that is important for both them and YOU) and still make it fun. I hope this helps