Hi there!
My name is Todd and I was a casual contributor on the old board. I haven't bothered to register on the new forum until today, but still read it from time to time. Some of you may remember me - I'm pretty sure I used the same nickname as before. I see some names I recognize (Sandi)!
I've known about my ITP for 10 years, but I've probably had it much longer. My lowest was 6K when I was put on IVIG as an emergency admit. The last few years, I've bounced between 30-70 but lately have been at the high end of that scale (yeah!). My old hemo was a highly recommended man close to the end of his career. He was extraordinarily cautious. Every time I dipped into the 30s, or trending down, I was back on prednisone and in for weekly CBCs. He compelled me to get a bone marrow biopsy (which was fine), and even pushed me hard toward the splenectomy option. I went as far as selecting a surgeon and pre-screening before seeking another opinion.
Then, I decided to change hemos a few years back. The new one has been so much better for me. He's younger and part of a hemo/oncology group that gets high marks in my neck of the woods. In the 2 1/2 years I've gone to the new hemo, I have not had to take any drugs and only have to go in for 6 month checkups - but I can get in the same day if I have any concerns or bleeding.
My new hemo simply has totally different approach for me. He says many people (like me)can have quite low platelet counts and don't really bleed - and they're not really sure why. Others bleed like crazy. While it's common for me to get pressure bruises, or bleed a bit longer if I cut myself, I never get petechia, blisters, or bleeding gums, etc. My old hemo simply went by the numbers, and panicked if I was below a certain line or "trending down." He used to even say, "You could bump your head and die at these numbers, so we need to get you back on the prednisone." Maybe he just liked billing my insurance, but I grew tired of his aggressive treatment.
So, recently I've come to live with ITP in relative peace. When you don't go to the Dr. on a weekly basis, you don't really think about it. Plus, I've had ITP long enough to recognize if an issue arises and I need to get in. It's something I'll probably always have, and always need to monitor - but I'm not stressing anymore. I realize everyone's case is different, and I'm not suggesting people try a more relaxed "hands off" approach like me. But, I highly recommend people get a second opinion if they have any doubts. It changed my life.
-Todd
