Four years later, when I was 25, I took a six-hour flight from New Jersey to Seattle. Flying is known to be a big risk factor for people with a history of blood clots, so I was prepared. I made sure to stand often during the flight, I did leg stretches every hour, and I even wore compression socks. Still, I felt leg pains along with nausea during the trip. By the time I arrived at my friend’s house in Seattle I was vomiting. Then I felt a very sharp pain in my leg, and suddenly I was better. At the time I thought this was just something that can happen after you’ve already had a clot.
But two weeks later I ended up back in the hospital when the same symptoms from my first clot returned. Doctors theorize that during the flight I experienced a DVT (deep vein thrombosis) in my leg and it traveled up to my lungs.
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Another theory is that the clot could have been caused by birth control, though I stopped taking it after my first clot. It had been prescribed to me years earlier following my endometriosis diagnosis, and definitely increases the risk of clots. I’ve managed to keep the endometriosis at bay with holistic treatments, and in retrospect I wish that I’d tried them before going on birth control.
Most people who have had clots will be on blood thinners for a long time. Because I’ve had two, I’m on blood thinners indefinitely. It’s scary to think I’m only 27 and will already be on some form of medication for the rest of my life. Luckily, the only side effects I have are fatigue and feeling very cold.
I now get an INR (International Normal Ratio)—a blood test that checks how long it takes for blood to clot—regularly, and take a lot of preventative measures like stretching. I also have to limit my intake of foods high in vitamin K, which contributes to blood coagulation, such as leafy greens, peas, and avocado. While doctors recommend that patients rebuild their lungs through exercise and breathing work, it is still difficult for me to do what I used to in terms of working out. Nevertheless, I am so grateful for the progress I’ve made, and I am aware that is in part because I’m young. My mom, on the other hand, had her blood clot when she was in her late thirties, and to this day is very limited in terms of what kind of physical activities she can do.
My mom and I thought it was strange that we’d both had blood clots, so we got tested for a gene mutation called MTHFR, which may be linked to clots. We both tested positive, and this is info that we share with all of our care providers.
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There is no way of knowing if I will get another clot. Certain life circumstances can be triggers: pregnancy and surgery, for example. I’m not planning to carry a child because of this; additionally, the MTHF mutation has also been associated with miscarriages. If I were to need surgery at some point, I would need to start the Lovenex injections again. And I’m unable to take anything estrogen-based for the rest of my life, even when I eventually go through menopause.
I didn’t let this diagnosis interrupt my goals: I work for the American Cancer Society, and am a PhD candidate. I missed a month of work, but didn’t skip a beat as far as schoolwork was concerned. I would manage to get my work done, even while I was connected to an oxygen tank.
Through watching my mom advocate for me—because she had an instinct that something was really wrong—I learned to do the same for myself. It’s so important to really speak up for yourself. This experience has truly taught me the importance of listening to my intuition.