In April 2022 here in New Zealand, my first pulmonary embolism was detected by chance. I mentioned a fluttery heart while having a routine flu vaccine. This prompted the nurse to check, and she discovered an irregular rhythm.
The doctor then ordered a few tests, including a D-dimer. By that night I was in the hospital, diagnosed with bilateral PE. After nine months on rivaroxaban and with all hematology testing clear, I was considered safe to come off the DOAC.
I saw a doctor again in May 2023 when I started experiencing symptoms again. She described me as “neurotic.”
Two days later, I was getting the kids ready for school when I felt faint and couldn’t move the left-hand side of my body. I realized I was having a stroke. It turns out that due to a hole in the heart (patent foramen ovale, or PFO), another clot had formed and traveled through my heart to my brain.
Luckily due to very quick treatment — I was airlifted to a hospital for an immediate clot retrieval —I made a full recovery.
Heart surgery followed, the PFO was closed and I was switched to aspirin. However, I then had another PE a few months later. The doctors think the clots are coming from a compressed iliac vein in the pelvic area (May-Thurner syndrome) so I’m now on DOAC lifelong.
The heavy menstrual bleeding caused by rivaroxaban was making me anemic, so I recently had an endometrial ablation procedure to help with menorrhagia (heavy periods) caused by blood thinners. Despite having fibroids that made the procedure a little more complex, this has been a game changer for me. The bleeding has almost stopped completely and I didn’t have to stop thinners for it as it was fairly nonintrusive.
It’s been a scary journey. In New Zealand there’s not much knowledge or support for clots. But I’m beyond grateful to be here for my kids and I appreciate every moment. Don’t be scared to ask to be checked if you feel things aren’t right. Advocate for your health and push for answers.
Resources
PEP Talk on Heavy Menstrual Bleeding
May-Thurner syndrome
Living Your Best Life on Blood Thinners
