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I Am My Best Advocate: Jessica’s Story

I Am My Best Advocate: Jessica’s Story

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

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The personal story is intended for informational purposes only. The National Blood Clot Alliance (NBCA) holds the rights to all content that appears on its website. The use by another organization or online group of any content on NBCA’s website, including patient stories that appear here, does not imply that NBCA is connected to these other organizations or groups or condones or endorses their work. Please contact info@stoptheclot.org with questions about this matter.

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