The Nurse Said I Was Wasting Their Time: Elizabeth’s Story

The Nurse Said I Was Wasting Their Time: Elizabeth’s Story

In the summer of 2020 I started to have leg pain. It went on for a little while but I just assumed I hurt it somehow. It was peak COVID and I wasn’t about to go to a doctor’s office unless I had to. But, after a week or two I started to notice some swelling as well.

At the time, I was working at a vascular surgery office doing medical billing. One day I mentioned my symptoms to my boss, and one of the surgeons overheard the conversation and said, “I think you should go get a quick scan. Just to be safe. You’re a young single mother — better check to make sure you don’t have a clot.”

Both myself and the ultrasound tech were skeptical, assuming he was jumping to conclusions.

To my surprise, they found multiple clots in my leg. I followed with my primary doctor the next week and she ordered a blood clotting panel. 14 vials later they found I had Prothrombin G20210A, a genetic clotting disorder I had since birth. I was 33 years old and no one in my family had ever heard of this. I had been on birth control since I was 15 and I had a 5 year old son. I was shocked.

After several months of anticoagulation treatment and follow-up care, my clots became chronic. My care team eventually transitioned me to a daily low-dose aspirin regimen with ongoing monitoring.

About a year later, I unexpectedly became pregnant again. Due to my new diagnosis and clotting history, I was referred to a specialist who casually told me I needed blood thinning injections daily. I was shocked and terrified. I had already been pregnant before and didn’t need any of this.

But, 336 injections later, I had a beautiful healthy little girl.

Since then, I’ve developed a few additional superficial clots, and my doctors continue to monitor me closely while we determine whether long-term anticoagulation may eventually be necessary.

I still experience occasional leg pain and cramping from the chronic clots, but I’m incredibly thankful my journey has a “simple” and happy ending — hoping to stay that way as long as I can.

I’m thankful for where I work. If I hadn’t been at the vascular office I may not have ever gone to the doctor and discovered this. I’m thankful for the hematologist I saw — he was so kind and explained things to me any time I was scared or had a question.

After my diagnosis, both of my parents got tested and we discovered my dad is the one I inherited the clotting disorder from — he was unaware.

Trust your body, ask questions, and find healthcare providers you trust.

 

Resources:

  1. Prothrombin G20210A Clotting Disorder
  2. The Genetics of Thrombophilia
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Additional patient stories

Amanda Pogoreski, a Prothrombin G20210A survivor who was diagnosed with multiple blood clots at 33 after years of an undetected inherited clotting disorder.

Olivia Parry, a pulmonary embolism survivor diagnosed at 24 weeks pregnant after being repeatedly dismissed by medical professionals.

Kristelle Torrekens, a DVT, bilateral pulmonary embolism, and pulmonary infarction survivor diagnosed postpartum at age 34 after giving birth prematurely to twins.