I came home from work one summer day and complained to my husband about my legs aching badly. I asked him to rub my feet to help relieve the pain. As he stood in front of me, he asked if I had even looked down at my legs because my left leg was unusually red and swollen. It had been a busy day at work, so I hadn’t been paying attention. I just chalked it up to being on my feet for a long time on a hot day.
The following day, I contacted my PCP, who sent me to the local hospital to get an ultrasound of my leg, which revealed a DVT. I was prescribed a course of enoxaparin injections and warfarin for a few months. Initial blood tests did not reveal any genetic disorders, so I was taken off the blood thinner. But six months later, not long after cross-country air travel, I suffered a second DVT.
This time, more blood tests revealed heterozygous factor V Leiden. Again, warfarin was prescribed, and I stayed on it for a year. After that, I was prescribed rivaroxiban.
Since that time, many family members across several generations have discovered that they also have the factor V Leiden gene mutation. A nephew has been hospitalized for DVT and PE. Most recently, my eldest sister died suddenly after complaining of leg pain after long travel. She was factor V Leiden positive, but did not pay attention to the warning signs and risks associated with it.
My sister’s unexpected death prompted me to become more involved with blood clot awareness and education in an attempt to help save lives. I was relieved to find NBCA and all the educational materials and resources offered, and a community of others who have experienced something similar to me.
I feel it’s my duty to share my story and to help others learn what I have learned about the risks, the warning signs, and available resources.
Resources
Factor V Leiden Resources
Family Testing for Clotting Disorders
Blood Clots and Air Travel
