I was only 49 when I was diagnosed with severe aortic stenosis, a condition where the aortic valve doesn’t open fully, restricting blood flow from the heart. Most people with that diagnosis are older than 65, but high dose radiation to treat Hodgkin’s lymphoma in my teens accelerated the development of the condition. I was told that I would need to have my aortic valve replaced, which at that time was typically performed through open-heart surgery and involved opening the chest and a long recovery. I’d later learn there was another, much less invasive option: transcatheter aortic valve replacement (TAVR).
However, at that time the Food and Drug Administration (FDA) approval for TAVR was limited to patients at a high risk of complications from open-heart surgery. Because of this, and because TAVR was newer, my first cardiologist told me I was too young for it. But I couldn’t accept this without pushing back.
Advocating for Myself
My experience from diagnosis of severe aortic stenosis to finding a heart team that offered me TAVR was not simple or straightforward. The first cardiologist I consulted told me about TAVR, a minimally invasive procedure where a catheter tube is inserted into the femoral artery through a small incision in the groin. The new heart valve is threaded through the catheter into the heart, precisely positioned over the diseased valve, and begins working immediately. However, he then let me know I wouldn’t be eligible for the procedure because of my age.
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