In December 2021, I was climbing up the subway stairs, heading to my college campus in New York City, when I started feeling off-balanced and dizzy.
I suffer from anxiety and panic attacks, so that’s what I thought was happening. I sat down and a nice family came over to me and asked if I was okay. I told them I thought I was just having a panic attack, and they handed me a snack and bottle of water. I sat there for a little bit longer until I felt like I was okay to stand up again.
But I tried walking a little bit farther and realized I was not okay. I decided to go back to my dorm, so I called a cab, and I also called my parents to tell them what was going on. I was getting more out of breath and having sharp chest pains that worsened when I breathed in. I was also coughing a lot and my mouth tasted like blood.
My parents told me that they wouldn’t be able to get me until the next morning, so I tried waiting it out. I decided to go to sleep and see how I felt in the morning, and if I still wasn’t okay, I would go to the hospital.
The next day I wasn’t any better, so I went to the ER. After a bunch of tests, the doctors came in and told me that I had multiple bilateral pulmonary emboli in my lungs. I was told that if I had waited to come in, I would not still be here.
I was immediately put on heparin, an injectable anticoagulant, until I was out of the hospital, then I was switched to an oral anticoagulant, rivaroxaban. The doctors told me that the estrogen-based contraceptive that I started taking in August 2021 was most likely the reason why I had these clots.
But my hematologist did more testing, and I was told that I also have a clotting disorder, antiphospholipid syndrome, making me predisposed to clots. I am now on anticoagulants for the rest of my life.
My lungs are weaker and contain scarring now. I am still out of breath a lot, so my pulmonologist gave me an inhaler to use. I try and exercise, but even just walking longer distances can still be challenging.
Many NBCA resources have been useful to me, including the new patient resource guide, Facebook support group, and PEP Talks that take place over Zoom.
Since this experience, I’ve learned to take better care of my body and to be grateful every day that I am still here. My advice to others is to celebrate life, as you’ve gotten another chance at living it. It’s going to be a long recovery, and it’s not going to be easy, but you’ve got this!
Resources
Antiphospholipid Syndrome Resources
Women and Blood Clots
Know Your Risk
