I am one of the lucky ones. At 46, I was active and healthy. On April 27, 2020, during a round of backyard badminton with my kids, I felt woozy and dizzy and needed to lie down. I couldn’t move or speak. I had a stroke! More specifically, a posterior cerebral artery (PCA) stroke.
I was never really given a reason why. I did not have the typical risk factors like high blood pressure, heart palpitations, or smoking.
A follow-up with my neurologist revealed that my factor VIII was elevated. This is a clotting factor associated with hemophilia when deficient. I was prescribed a daily regimen of aspirin and a statin.
In December 2021, I attended a family wedding that was about a 10-hour drive. After returning home, I went to my PCP complaining of shortness of breath. After a D-Dimer test, a CT scan, and I was back in the hospital with a bilateral pulmonary embolism.
I did not understand how this could happen. I thought the aspirin was supposed to be doing their thing! Other than a stroke history, I was not aware of any risk factors for PE.
My daily regimen now includes apixaban. A follow-up with my PCP did reveal that my ferritin was at 2.8. Ferritin is a protein that stores iron in the body and releases it when needed. I began and continued treatment for anemia.
All in all, I am still here. I am still working on staying healthy. And, I am constantly going down the rabbit hole for information and prevention. In hindsight, I feel as though I should have looked closer at the numbers in my labs, like my hemoglobin, and asked more questions.
I have learned aspirin is not enough, that being a self advocate is important. NBCA has helped with having information shared from resources and others’ personal experiences.
I trusted the doctors. I still do. I’ve had a lot of tests and procedures. But, I also trust myself to look deeper. I am my best advocate. There is a wealth of information available. I am hoping someone will have similarities to my story and we can help each other.
Resources
Facebook Support Group
New Patient Resource Guide
Questions to Ask Your Doctor
