My cousin, who was 22, died of a pulmonary embolism when I was 10 years old. At autopsy, she was found to have protein C resistance, explained by the factor V Leiden mutation. As this mutation is genetic, the whole family was tested. I was found to be a carrier of this mutation, and I was homozygous, meaning I inherited this gene from both parents. I grew up knowing this, but it did not affect my daily life.
However, when I was 22, I returned to France after a trip to Finland with major back pain, fatigue, and shortness of breath. My doctor sent me to the emergency room, where doctors found that I had a pulmonary embolism (PE).
In the hospital, I could hear medical professionals behind the door talking amongst themselves and saying, “What a shame, she’s only 22 and we’re not sure she’ll survive the night.”
It was one of the most traumatic events of my life. Luckily, my treatment was successful, and I returned to normal.
Six months later, the pain in my lungs and back returned. Examinations revealed that I had was having another pulmonary embolism.
After these two frightening episodes, doctors put me on blood thinners for life. I am now 35 years old, and I have been taking my anticoagulant little Previscan pill every day for more than 13 years, and I monitor my INR regularly.
This drug is my best friend and worst enemy at the same time. It allows me to live without the fear of having another embolism, but it brings me tons of constraints in my daily life, especially now that I’m considering pregnancy.
NBCA resources and patient stories have helped me to understand that what I was feeling was normal and that surviving a blood clot was not only a physical feat but doing so would also leave psychological marks.
My experience has changed my perception of life. Since my first embolism, I have been saying, “I don’t have time.” It has given me a hunger to live and enjoy everything life has to offer. So far, so good.
Protein C Resistance
Factor V Leiden
Signs and Symptoms of Blood Clots