Story about Factor V Leiden .

Factor V Leiden & Lupus Anticoagulant

May 11, 2017

By: Stacy


In 2010 I was pregnant with my son. Late in my pregnancy I started having horrible swelling in my legs. They were hot, red, and huge. I was placed on maternity leave and put on bed rest.

My son was born healthy, but I hemorraged and was given a clotting factor to stop the bleeding. My home recovery from delivery went well, until 3 weeks later. I had thought I pulled a muscle in my calf when out walking. I didn't think much of it, until the pain didn't go away and got worse. I went to the hospital and was told I had an infection in a vein and was given antibiotics. About a 2 weeks later the pain hadn't subsided and was much worse. I had to walk with a cane since I couldn't support my weight and could only walk 10 feet before the throbbing pain of being upright was too much to handle. 

I returned to the hospital and this time I was given lovenox and warfarin and sent to get an ultra sound of my leg. The scan did not find a blood clot (however that's possible). I was sent home with some pain killers. 

 

Eventually the pain was so much I could barely walk at all. The day I felt that same pain in my buttock and thigh, I knew something was very wrong. I went to a different hospital where I was immediately admitted and given a barrage of blood thinners. An ultrasound revealed I had a clot in my right leg from my ankle to above my hip. A surgeon came in and suggested immediate surgery. They removed the top half of my clot from my knee up and inserted an IVC filter. 

I was in the hospital for 4 days, with round the clock blood work, pain killers, doctors, nurses... With a 2 month old baby at home. This was the scariest time of my life. 

Luckily I made a decent recovery. Although the clot left scarring in my vein which hinders blood flow, varicose veins, constant swelling and skin discoloration. 

3 months after I left the hospital I was diagnosed with Factor V Leiden. Both genes are mutated and given a recommendation that I never get pregnant again. 6 months after the original diagnosis, the hematologist I went to for a second opinion gave me the same diagnosis and added Lupus Anticoagulant. It is a misnomer and makes my blood more likely to clot as well. 

So now, I take blood thinners and will for the rest of my life. Through educating myself and openly talking about my mutation and disease I have better been able to work with my doctors manage my health and encouraged my family to be tested. 2 of my siblings share the mutation and luckily they've been able to take precautions to avoid getting a clot. 

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