Can you share your experience with heart valve disease?
I was quite surprised by the diagnosis of a bicuspid aortic valve at 42 years old in July 2020 after suffering a heart attack due to another congenital defect. Thankfully, my BAV is holding steady at the moment and isn’t causing symptoms. However, having the knowledge now and knowing that I have to monitor it yearly is background noise that I have had to learn to cope with. Thankfully, I have a great therapist, cardiologist and support network which helps me stay calm.
What encouraged you to become a patient advocate?
My symptoms were dismissed. I received zero education about my valve including the dangers and how to monitor it every year. My own cardiologist couldn’t even be bothered with telling me himself that I had a BAV. He had his PA call me. I felt so alone and dismissed. I said never again will this happen to another heart patient so I started my own advocacy work and podcast to help others feel less alone.
How did you become involved with Heart Valve Voice US, as well as other heart health advocacy organizations?
Thanks to Robyn Peacock of HVV-US, I know about your organization! Robyn and I are acquainted through WomenHeart, another wonderful organization. Additionally, I support GlobalArch. We are all in this together. No one should walk this walk alone.
Why do you think it is important for other patients living with heart valve disease to share their story?
We need to raise more awareness of what congenital diseases can affect the heart. I was blindsided! And, now I have heart buddies all over the world because of my willingness to tell my story and others who are willing to tell their stories! There’s great comfort in knowing we aren’t alone. Plus, it’s good to hear from others how they have recovered. Sharing ideas is so helpful!
In your opinion, what can patients, health professionals, and advocacy groups do to continue raising awareness about valve disease?
Keep talking about! Show up at health fairs. Be on social media using hashtags. Produce educational material. There is no shame in this diagnosis and there is no shame in scars.
What is one fun fact that others may not know about you?
I survived a lightning strike while mountain biking in 2003 in Jackson, WY. I didn’t sleep for three days due to the electrical charge. It was a wild experience. And it hurt.
