Originally posted by Lachesis00
I have a birth defect called Thrombosidapenia with Absent Radius Syndrome. The first part is low platelets. They run around 60,000 but can and will drop if I get ill. They dropped to under 2,000.
I flew to Seattle (Alaska is not equipped for Platelet problems) and the doctor was *such* a jerk!!! He was ragging on me for "whining" and I wasn't *dying* at 2,000. {I could have bled internally} I mean don't you KNOW people have AIDS and Cancer and their platelets are low ALL the time? He didn't comprehend we had no blood bank in Alaska (well SE Alaska) and while he was a hematologist, he didn't comprehend the situation AT all. I refused to leave {Seattle} (almost a month) until they came up to reasonable levels for me.
I am so sorry to hear that.
My hemotologist has a lot of self confidence. I think that's a good thing. Because what I had is fairly rare, and my reaction to treatments even rarer, I wasn't exactly easy to fix. He took me as a professional challenge. I think someone who was less sure of themselves could end up being a jerk to their patients who aren't textbook cases to fix. (My husband and I just had this conversation while waiting to see my doctor this afternoon, then I come back and read your post and I'm thinking, yes, like this doctor.)
I sure got the idea that low platelets over an extended period of time weren't a good thing. The insurance company didn't even question the 15 days I've been in the hospital over the past 3 1/2 weeks--all the hospital did was fax the platelet count and they agreed that's where I needed to be. My first bill was $37,000 just for the hospital, not the doctors. I'm sure if they could have found a way to justify my being at home, they would have.
You really have to be your own advocate for your own health care. And after reading this thread I am convinced there's a need for a vaccine against Fifth Disease!

