Gaining Understanding After My Blood Clot: Sarah’s Story

Categories: Patient Stories

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I had my first encounter with a blood clot early in 2017. A month before it happened, I was in a movie theater and moved awkwardly, which resulted in a sharp pain in my lower back. That pain continued to radiate until it became severe lower back pain. As a full-time college student, this made walking to class, sitting up, and doing anything a major chore. I assumed I just sprained my back. I got used to the pain, until it increased a month later, along with stiffness in my left leg. It looked a little swollen, but nothing major. The next day, it was significantly swollen, about one and a half times the size of the other leg, from the thigh to the toe. The doctors thought it was a blood clot in my leg, but they found nothing on the ultrasound, and so they sent me home. The next day I woke up to a stretching pain, and my leg was about two times the size of my other leg. I could not bend my knee, and I could barely walk.

After three CT scans, the doctors finally figured out it was a massive clot in my abdomen that clogged almost all of my collateral veins. They thought that the clot was just covering the inferior vena cava, but after I had surgery to remove it, they realized my inferior vena cava was completely missing. This explained so much of the random pain and fatigue I have always experienced, throughout my entire life. My left leg was swollen from my toes to the top of my waist on my left side. They told me this would have happened sooner if I had been more physically active.

I am now on a new oral anticoagulant, and I wear compression stockings. I still have constant vascular pain throughout all of my extremities that I have not been able to remedy. My fingers and toes also go numb very easily. I am so terrified that I will feel that harsh pain and stiffness, and end up back in the hospital again. I really did not understand the severity of the situation until after the surgery. It has been challenging to adapt to the situation while being a full-time college student.

The doctors are still unsure what caused this, but claim it may have been hormonal birth control, even though I had been on it for over a decade without any problems. I recently had to get a hormone-based IUD to reduce endometriosis and have been experiencing swelling. I am now set to meet with an endocrinologist. I really want to join the Stop the Clot® community to gain an understanding and a sense of community among people who share similar ailments. I want to be less afraid.

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Author: SW