I am a 39-year-old Native American. I have had 23 pulmonary emboli (PE) and 31 incidents of deep vein thrombosis (DVT) starting at age 22, caused by the factor V Leiden mutation. I also have congenital protein C and S deficiencies.
Nurses say I’m a miracle and call me a medical anomaly. Doctors ask me how I’m still alive.
My clotting issues have cost me eight relationships and made my family worry, especially my mom. This is the most painful experience I’ve ever been through. Family testing has shown that my mother is the carrier of the disorder. My two siblings also have it, along with their kids. My sister got a PE from pregnancy and said the pain was worse than labor!
My advice to other DVT and PE patients is to get tested for blood clotting disorders, particularly the factor V mutation. I have to take a blood thinner for life. I have severe depression because I’m always waiting for the next one, and I’m haunted by the fact that I’ll never be able to work again. I still want to know, “Why me?”
Resources
Factor V Leiden Resources
Signs and Symptoms of Blood Clots
Psychological Impact of Blood Clots
