Can you share your experience with heart valve disease?
My story is quite convoluted! I was born with a congenital defect (CHD) of the mitral valve. In fact, when my mother was in labor with me, I survived both a heart attack and stroke. As a result, I spent nearly two weeks in the Neonatal Care Unit, and during this time, my amazing pediatric cardiologist was able to determine and diagnose my valvular defect. I grew up minimally impacted by my CHD, and even participated in sports as a teen. However, the prospect of heart surgery loomed in the background of my life. Both my pediatric cardiologist as well as my adult cardiologist informed me that I wouldn’t need surgery until retirement age, so it was completely surprise that my valve began to fail when I was thirty years old. I had a valve repair which lasted ten years, then a tissue valve replacement in 2016. Due to unforeseen complications, I needed another valve replacement in 2017, and because of complications with that valve, I had my fourth (and hopefully final) valve surgery in 2022.
What encouraged you to become a patient advocate?
The fact that I had valve surgery “early” in my life despite my doctors’ predictions taught me self-advocacy. I had some unfortunate cardiac “misadventures” (as I call them) after the first surgery from latent surgical complications to heart rhythm issues, and I had to learn to speak up for myself with new doctors.
Additionally, my own experiences inspired me to help others because I felt alone in my valve journey at first until I came across an online support discussion board—this was before Facebook and social media in the mid-2000s—so meeting and interacting with others who had been through heart valve surgery themselves empowered me, and encouraged me to reach out to others so that they wouldn’t feel isolated in their own heart valve journeys.
How did you become involved with Heart Valve Voice US, as well as other heart health advocacy organizations?
I became involved with Heart Valve Voice US through my connections with the American Heart Association. Back in 2009, after suffering a great personal loss, I felt as if I were drifting through life and I felt that I needed to get involved with an organization in order to give back to the community. I was just going to work, taking on some extra duties at my job, but not really feeling as if I was doing something really good for others. I saw an online advertisement for a local American Heart Association Walk, got involved with the logistics committee, made some new friends, and through the American Heart Association, I was able to attend and participate in several events in which I was able to support others in their heart journeys.
Why do you think it is important for other patients living with heart valve disease to share their story?
I believe it is important for other patients living with heart valve disease to share their stories because going through heart valve disease and surgery can be an isolating experience unless you already know someone who has been affected. By sharing our stories and raising our voices, we can uplift and inspire others to share their stories, therefore paying it forward.
In your opinion, what can patients, health professional, and advocacy groups do to continue raising awareness about valve disease?
In my opinion, patients can continue to raise awareness about heart valve disease by being the faces and voices of valve disease—to be representatives from different walks of life as we show that we are all in this together. Health professionals can continue raising awareness about valve disease by sharing more information about what valve disease is, who it affects, and how valve disease is treated, especially as patients face surgery. Education is key! Finally, advocacy groups can continue raising awareness about valve disease by educating others as well. For example, many people think that valve disease is something that affects only the older population, but there are people who were born with heart valve defects, others who develop valve disease from various causes, and others who may not know they have valve disease. By demonstrating that valve disease can affect anyone, at any age, there can be more awareness.
What is one fun fact that others may not know about you?
Growing up in Southern California, I loved watching the Tournament of Roses Parade on New Year’s Day. When I was a kid, I wanted to be in the Parade. Then, in 2016, I got to be an outwalker (walked alongside) the American Heart Association/Union Bank float! I loved the whole process from helping to build the float to receiving the energy from the spectators on Parade Day, meeting new people, and seeing all the other floats up close and personal. It was a “Bucket List” dream come true!
