Less than two days after giving birth to her first baby, my aunt died of blood clots in her lungs and heart.
I was 13 at the time and the news shocked the whole family. Two weeks after her funeral, I had some strange leg pain. I thought I had pulled a muscle or injured myself somehow. It was like a cramp that would not go away.
A few days later I suddenly also was having a lot of trouble breathing. I had asthma as a child and had to do breathing treatments so we assumed that’s all it was. I was a relatively healthy kid otherwise.
My symptoms persisted so my mom took me to my pediatrician. She told us to get to the ER immediately. It turned out I had two DVTs in my right leg and multiple PEs in both my lungs.
My doctor made the diagnosis of triple-positive antiphospholipid syndrome about two months later. I went through a rigorous treatment plan. Many blood thinners did not work well for me long-term. I had a good check up on a Friday, and by mid-day Monday, I was headed back into the ER with another DVT, one of the biggest I’ve ever had.
My doctor thought we were playing a prank on him because he gave me a clean bill of health on Friday before. From there we still struggled to find a blood thinner that would work well.
Eventually, after catching a football on Thanksgiving and ending up with a large superficial clot on my arm, we realized I was close to going into catastrophic antiphospholipid syndrome or CAPS. I ended up needing two rounds of chemo to get my antibodies to cooperate. Luckily, the second round worked and I’ve been healthy since.
This has changed my entire life and how I view the world and invisible illnesses. I’m much more appreciative of my life and experiences now. Although disadvantaged in some ways, I still am very proud of how far I’ve come.
Resources
APS
Signs and Symptoms
Living Your Best Life on Blood Thinners
