In 2016, when I was a sophomore in high school, I started having trouble breathing. My primary care doctor couldn’t figure out what was going on. I kept getting worse until my mom finally requested a specialist.
They saw that my pulmonary pressures were through the roof and they wouldn’t let me go home. After many tests, a right heart cath finally showed that my lungs were filled with blood clots.
I was diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH) and underwent a pulmonary thromboendarterectomy (PTE), which is an open-heart surgical procedure that removes blood clots and scar tissue from the pulmonary arteries. Doctors also fixed the hole in my heart that had developed from the extreme pulmonary pressure.
In terms of risk factors, there were none. No one in my family had a history of clots and genetic testing showed no clotting disorders. I was on birth control for a few months before this happened, and while they said it certainly didn’t help, it was not the main factor.
This has changed my lifestyle in that I have a home machine to monitor my INR. I’m also cautious about taking my medications and knowing what interacts with them.
Healing physically was the easy part, to be honest. The mental and emotional trauma that came with such an event was something I wasn’t expecting, and it takes more work to overcome.
My advice to others is to always stand up for yourself when you feel like something isn’t right, but your doctor is saying otherwise. You know your body better. Also, don’t be afraid to ask for help. Mental health is just as important!
Resources
Psychological Impact of Blood Clots
What is a PE?
Children and Blood Clots
