When I was diagnosed with severe aortic stenosis (AS), I knew very little about the disease. I didn’t know that different types of specialists treated aortic stenosis, or how to find the best resources to learn about valve disease. Before my valve replacement, I felt anxious and overwhelmed at times. I often wished I could talk to another patient who knew exactly what I was going through.
I’ve learned so much on my journey from diagnosis to treatment to patient advocate, and these are my top tips for someone diagnosed with aortic stenosis:
1. Find a fellow patient to talk to
Some of us have family members or friends we can reach out to when we need an empathetic ear or a caring hug. Even with a support system, I find there’s nothing quite as helpful and reassuring as talking with another patient who truly understands the unique experience of heart valve disease.
After I was diagnosed eight years ago, my doctor and I decided I was a good candidate to replace my diseased aortic valve via a minimally invasive procedure called transcatheter aortic valve replacement (TAVR), rather than through open-heart surgery. At the time, it was very difficult to find other patients who had undergone TAVR. I asked my doctor if he could get permission to share one of his patient’s contact information...
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