Health update

[womzilla]

The story so far:

My father had two pulmonary embolisms, one in 1989 and one in 1994. Since the second one, he has been on a maintanance dose of a anticoagulant to prevent a third.

My brother got a pulmonary embolism this year and died of it without realizing what he had.

The story now:

Since my brother's death, my sister and I have been investigating whether we have genetic clotting disorders. Tim was never tested; father has been tested for some risk factors, but the anticoagulant prevents testing for some others, like Protein C and Protein S deficiencies. (These are two natural anti-coagulants, chemicals in the bloodstream which prevent blood from clotting capriciously and indiscriminately.)

A few weeks ago, my sister tested somewhat low for Protein C. When I had a brief health panic late last month, I started a round of blood tests through my General Practitioner. The results came back and indicated that my Protein C level is also somewhat low. I compared notes with my sister and we ended up thinking that my level was very low.

It took a ridiculously long time to get an appointment with a hematologist, but we finally met today. He explained that the Protein C test result I had received was on a different scale than the test Terry had taken, so the 49 score I got was pretty equivalent to the 60 score she got--in both cases, it indicated a Protein C level which is below normal but not pathological.

Based purely on the Protein C level, he does not recommend that I go on prophylactic anticoagulants except on an ad hoc basis--that is, if I know in advance that I'm going to be in a situation which significantly elevates my risk, such as a long plane trip, a period of enforced bed rest following surgery, or some other situation in which I will have extended periods of leg immobility. Short-term prophylactic anticoagulants are injected, alas; there are ingestible anticoagulants (including warfarin/Coumadin), but he says they're not suitable for occasional use, because they suppress natural Protein C and S function as well as supressing coagulation and, without proper medical preparation, are as likely to cause problems as prevent them.

Much blood was drawn from my body for another round of testing to see if I have any more exotic risk factors. If not, my prescription is pretty much what it was last month: Keep moving around and don't let the blood pool in my feet. (He showed me a simple leg exercise to help minimize the risks of that.)

While in some ways I'd be happier if I had been put on medicine--I'd feel like something has been done--all in all, I can't complain about not being sick enough to need to go on prescription meds for the rest of my life. (Yet. I'm sure I will eventually.)

Comments

Predispositions

[mycrazyhair.livejournal.com]

Hi. You don't know me, but I'm a friend of neonnurse's. My sister had a pulmonary embolism earlier this year and did not survive it. We also have a bit of a family history (my cousin Patti survived a pulmonary embolism only because she was in hospital when it occurred, and my grandfather on the other side also survived an embolism). However, I have now seen a hematoligst, and had full testing done and I don't appear to have any sort of genetic predisposition.

Anyway, I just wanted to wish you luck with the testing. I found that, for myself at least, information is the best way to avoid panic.

I know what you mean about wishing that "something could be done". But here's hoping that they don't actually find any exotic factors that indicate that you are at higher risk, and therefore need that sort of intervention.

Take care.

[womzilla.livejournal.com]

Thank you for all of the good wishes.