I Was Diagnosed with Factor V Leiden When It Was New: Lisa’s Story

I Was Diagnosed with Factor V Leiden When It Was New: Lisa’s Story

In March 1989, I was a sophomore in college and on spring break in Florida when my left calf became extremely swollen and I could barely walk. I also had severe pain in between my shoulders and had shortness of breath.

A friend took me to the ER, where I stayed for almost two weeks. I was diagnosed with a blood clot in my leg (DVT) and several blood clots in my lungs (PE).

In the early and mid-90s, I experienced several additional clots, including while pregnant, and still no understanding of why. Finally, in 1996, I was diagnosed with a newly discovered genetic clotting disorder, factor V Leiden homozygous. Later, my sister and daughter also tested positive.

On January 30, 2007, I faced with another round of DVTs and several clots in my lungs, some blocking my pulmonary arteries and many in the lower lobes. I was told that most do not survive.

However, I defied the odds and feel blessed to be alive and able to share my story. I continue to live with constant leg swelling and pain, lung issues and the constant fear of developing more clots.

There have been so many changes in the procedures for caring for a clot. In 1989, I was sent home using a wheelchair and was told to not exercise or walk much. Now, we are encouraged to get up and move.

I have also lived most of my adult life on blood thinners and with bi-weekly blood tests. But I have no complaints because I am alive, active and making new memories.


Factor V Leiden
Post-Thrombotic Syndrome
Psychological Impact of Blood Clots

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