I've Spent the Last Decade Fighting to be Heard by Medical Professionals: Kate's Story

I’ve Spent the Last Decade Fighting to be Heard by Medical Professionals: Kate’s Story

January 17, 2024

In July 2023, I went to the emergency room with immobilizing pain and swelling in my left leg. I was quickly diagnosed with two DVTs and was put on apixaban despite being a healthy 37-year-old with no risk factors.

About six weeks later, I was still experiencing pain and swelling. I requested another ultrasound despite being told that it was likely unnecessary. As suspected, the previous clots had not decreased in size. I also had three to four new clots in different veins. I was immediately prescribed enoxaparin sodium injections twice daily and was switched to warfarin. I’m currently managing the new warfarin therapy along with the lifestyle and diet changes that this therapy demands.

After many blood tests and doctor visits, I was officially diagnosed with antiphospholipid syndrome (APS), an autoimmune disorder that causes unprovoked blood clotting mainly in young women.

It was then that I realized that my APS journey had unknowingly begun nine years ago. When I was at just 24 gestational weeks, I suffered from severe and sudden pains in my midsection. After being told that the pain was normal and to take Tylenol, I finally trusted my gut and rushed to the ER. Two hours later, my first baby was delivered by emergency C-section, saving both of our lives.

I was diagnosed with HELLP (hemolysis, elevated liver enzymes, and low platelets) syndrome, a severe form of pre-eclampsia, and spent five long, traumatic months in the NICU with my daughter, not sure if she would survive. We are so lucky to now have a beautiful, thriving 9-year-old.

I was never tested further after this. If I had been, my DVTs in 2023 may have been prevented.

I have spent the past decade fighting to be heard by medical professionals who immediately doubt the possibility of that rare exception to the normal outcome. From HELLP to APS, being that “1%” means constantly advocating for yourself and trusting your gut, even when told otherwise. I continue to emphasize the importance of self-advocacy to everyone I know.

I am still trying to process it all, but have found helpful resources online through the NBCA as well as social media support groups. There are so many people out there who understand.