Ignoring These Thrombosis Symptoms Almost Cost Me My Life

It started as a sharp pain that shot through my right leg and lower back as I climbed out of the pool during a swim meet, exhausted but exhilarated by the thrill of competition. The intensity was shocking, almost debilitating. But it passed, and the next day I was in the pool again, pushing myself to swim my best. Yet my breath wouldn’t come, my limbs felt sluggish and I put in one of the worst performances of my college athletic career.

In most stories, the moral comes at the end. But let me give you the bottom line right away. I should have gone directly from the pool to the emergency room. Instead, it would be weeks before I learned I had a blood clot deep inside my leg running from my hip to my shin, and that it had come close to killing me.

Today I know all about venous thromboembolism, or VTE, because that experience 20 years ago eventually led me to take a job with the International Society on Thrombosis and Haemostasis (ISTH) in North Carolina. I’m the campaign manager for World Thrombosis Day, which is observed globally every October 13 to raise awareness of blood clots.

I now know VTE is a leading preventable cause of death in hospitals and a serious health concern for pregnant women and people with cancer and heart disease. I know it’s a health risk for people like me who have a genetic variant called Factor V Leiden. Factor V Leiden makes it easier for blood to coagulate, increasing the chances of developing a dangerous clot that blocks flow in a vein or artery. It’s most common in people of European ancestry; about five percent of Europeans and Americans of European descent have it.

Of course, as an otherwise fit 19-year-old college athlete, I knew none of this. I just kept practicing through the pain. When I went to the team doctor, he didn’t find anything wrong. But as time went by things got worse — I started coughing up blood and had trouble sleeping.

That’s when I learned two important lessons: listen to your body and listen to your friends. After two weeks, I finally let my friend Kelly drag me to urgent care, where the doctor sent me straight to the emergency room. In the hospital, my right leg swelled to twice the size of my left. A CT scan quickly revealed the enormous blood clot growing there for who knows how long.

I had waited so long to seek help, the doctors worried I might lose my leg or even die. They called my parents, then tried a medicine that breaks up clots. When that didn’t work, surgeons removed as much of the clot as they could. I still have four inches of blocked vein in my right leg.

After the surgery, I was sure my swimming career was over. I had to take blood thinners and wear a support stocking. I felt like a person four times my age. But I worked hard to regain my stamina and swam well enough during my last year at East Carolina University to be nationally ranked.

Eventually, my doctors told me it would be safe to go off blood thinners. For a while it was. But 10 years after the first one I had another clot, which built up around the four-inch stretch of blood clot the surgeons had been forced to leave behind. Several pulmonary embolisms (PEs) formed when pieces of clot broke off and traveled to my lungs, blocking their blood supply and starving my body of oxygen.

Now I’m back on blood thinners, and the support stocking is a wardrobe staple. I have constant leg pain, but I have continued running marathons, teaching cycling classes and scuba diving. If anything, I figure the exercise helps prevent another clot by keeping my blood flowing.

For 20 years, I felt like I was the only person who had ever gone through such an ordeal. But since I started working with the World Thrombosis Day campaign, I’ve met countless people just like me.

Knowing there are other people who have gone through what I did motivates me to make sure that no survivor of thrombosis ever feels alone. It may be unusual for a young, healthy person to experience a clot, but there are many of us who have. And the more people who know about our experiences, the more likely they are to get help immediately if it ever happens to them. I sure wish I had.