07 April 2006

Vegas hematologists suck.

My sister, having been diagnosed with Von Willebrand's Disease over a decade ago, knows all too well how absolutely ignorant the "hematologists" are out here. Some think only males can have hemophilia, or that there are only a handful of types for thrombophilia, and I'm experiencing this now. It's more than irritating. For something like this, it's a literal balance of life and death...I'm not being melodramatic.

The doctor who diagnosed me with my forms of thrombophilia told me early on that I would have problems with so-called hematologists. For one, I have a dual type, which causes problems that single types don't. Two, in women, hormones effect testing and factor counts. So I'll test positive sometimes and negative other times...and any hematologist that knows anything will understand this. So they doctor who diagnosed me spent a good long time explaining everything: risks, mostly, but also how it would affect my work and life on a whole, especially how it can affect my child-bearing abilities. But he wasn't a hematologist, just a perinatologist with a specialty in maternal-fetal care with regards to clotting disorders. So in thinking I would get more specialized care, I sought out a hematologist. My insurance didn't support any; all they had were oncologists with minors in hematology. I shouldn't have bothered going. This doctor didn't bother going over lab results or anything, he just said, "Yeah, it's abnormal but I wouldn't worry about it. You don't have a real clotting disorder, because if you did, it wouldn't wait to manifest now. You would have known already."

Firstly, yeah, I do have a real clotting disorder, that's why the lab results were abnormal. Secondly, it's perfectly normal for blood disorders to manifest at any time; in fact, in women most forms of thrombophilia are discovered after several miscarriages. Thirdly, a blood disorder can be diagnosed with no symptoms and not actually cause problems until years later.

My poor sister dealt with the same problems with her disorder, actually being denied DDAVP (an essential clotting factor) during labour with her first child, until she began to hemorrhage. Why? Because blood disorders in women are often masked with hormones, therefore pregnancy and menstruation cause negative readings in lab results. And since there are apparently no decent hematologists out here, one must rely on doctors such as my perinatologist, for whom I am extremely grateful, to pick up the slack.

So the reason for this long story...basically, if the surgeon goes in again and finds excessive clotting to be the cause of all this pain, I want to bring a bucket of it to that oncologist's office and drop it on his desk. Maybe he can let me know what it is, if not a "real" clotting disorder.

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