DVT/PE & Blood Clotting Disorder Support & Information

Pulmonary Embolisms, Deep Vein Thrombosis, and Clotting Disorders - oh my!

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plickt wrote in thrombi_support
hi, i'm katie, 25, and have protein s deficiency. i'm one of the lucky ones. my mom was diagnosed by a great doctor after she had a few clots and a long family history of clotters. when my mom did some research and found that it was genetic my sister and i were both tested. i'm a 65, not quite sure what that means, and my last protein s test was in 2001. i don't know if the levels change at all with time?

since i was diagnosed, i have not had any clots, but it did prove to be a bit of a complication with my APML leukemia i fought in 2004. it most likely contributed to my DIC (disseminated intravascular coagulation).

my sister never had any clots but had 1 miscarriage and was put on a heparin pump for her two other pregnancies. i'm not sure where her protein s levels are at, but the heparin worked well for her, other than being a real hassle. she has two great kids to show for it.

i beat the cancer and my husband and i are looking to get pregnant in the near future. i'm a bit nervous about the heparin pump. the OB said that i will most likely need it. but, my insurance company will not cover it without a fight. and after all i did with my leukemia, i don't want to fight with them any more.

this is a great community. it is nice to hear from people with similar strange traits. usually when i tell people i have protein s they look at me like i have 9 heads. even people in the medical community don't know what it means.

thanks for the support.

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First congrats on beating leukemia!! Just wonderful!

If it helps you any at all... I took Lovenox most of the time during my pregnancy. Its much nicer than heparin in my opinion. I had less blood work, and they came in pre-filled syringes. Less of a hassle. I took heparin for the last 4 weeks of my pregnancy and I hated it. The only downfall with the lovenox was the cost. Maybe thats something you can look into.:) See if the insurance will give you less of a fight maybe.

Good luck with starting a family :)


i'll call my insurance company on monday to see if they will cover the lovenox.

(Deleted comment)

i don't mean to get too personal, but, how were your pregnancies? since you were not diagnosed until '05 i'm guessing that you did not have any preventative thinners during your pregnancies? i'm hoping that i can get by with out them.

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