In 1994, I had my son prematurely at 24 weeks. They did a bunch of testing and found out that I had antiphospholipid syndrome (APS).
I had another preterm baby at 25 weeks three years later. I was followed by a high-risk OB/GYN at the time but no other preventative measures were done while pregnant.
Over the years, my APS diagnosis got lost in my medical records. I always had joint pain and was prescribed anti-inflammatory medications. In 2021 I had a medial collateral ligament (MCL) surgery to repair a tor n MCL ligament in the knee.
Within the first two weeks of the surgery, I had pain in my left calf. I thought it was related to the surgery. Within the next couple of weeks, I was getting shortness of breath to the point that walking down the stairs was a task.
Due to Covid, I went to a Covid clinic. They told me to get to the hospital. I was diagnosed with multiple bilateral PEs. All lobes were involved along with a saddle clot. I stayed in the ICU for three days.
NBCA resources helped put my APS diagnosis puzzle together. In the ICU, I read up on what a blood clot was. I came across an article on blood clots and APS. I mentioned to my pulmonologist that I was diagnosed with APS years earlier and he had me re-tested for it. It came back as triple positive.
This led to many hospital visits with a hematologist, rheumatologist, pulmonologist, and my PCP. I’m still on my journey to return to a healthier state, but it’s getting easier now that I’m on hydroxychloroquine to help relieve inflammation and warfarin.
