Can you share your experience with heart valve disease?
In the Spring of 2007, my bicuspid aortic valve and an ascending aortic aneurysm was discovered. Thankfully, both were in manageable stages, so I was carefully and routinely followed at Cedars Sinai Medical Center in Los Angeles for many years. Fast forward to 2017 when I developed endocarditis, a blood infection that attacked my compromised aortic valve. Thankfully, it was caught after a frustrating six months, and after seven weeks of IV antibiotics and a seven-day hospital stay, I fully recovered with minimal damage to my valve. My valve disease symptoms started to appear. Fatigue after exercising; a weird horizontal pressure, pain, not much but there, developed across my chest when I took walks or tried to hurry through an airport; sleeping more in the afternoons and brain fog. I felt like I was aging quicker than I should be. I didn’t know at the time that my valve was becoming severely stenotic and that my heart was working hard to pump blood through the narrowing valve, to get oxygen-rich blood to my body. In June 2022, I had open heart surgery to replace my aortic valve and aneurysm. Since then, I have returned to the activities I enjoyed and grateful to my care team.
What encouraged you to become a patient advocate?
After my surgery and well into my recovery, I felt a calling to share my story. If telling the journey of discovering my aneurysm on my own; of advocating for my health to continue to search for answers as to why I was so ill in 2017 and no doctor was able to tell me why, could help one person fight for their health and make a life-saving discovery, then I would feel like the gift of a second chance at life was being utilized well.
How did you become involved with Heart Valve Voice US, as well as other heart health advocacy organizations?
I started searching the internet for volunteering opportunities in the heart world. WomenHeart.org had openings in their Champion class of Spring of 2023 and I applied. I reached out to a few other organizations as well as applying to the Edwards Life Sciences Patient Experience. I felt as though the universe was telling me to cast my net far and wide and see what came back. My current role at Heart Valve Voice US is a dream fulfilled. It is an honor to be part of such an important organization that is spreading awareness of heart valve disease and working on policy and advocacy with other organizations – all with the goal of saving lives.
Why do you think it is important for other patients living with heart valve disease to share their story?
While we all sit in the same boat of “heart disease”, there are a million stories and not one is the same as another. Motivating others to keep having hope when the news is not so good; when the pain is high; when it is hard to go to another appointment – this is the gift of people sharing and supporting and connecting with others. In support groups, celebrating the victories, both large and small, are so important and help people feel not alone. Care partners have their stories, too. Basically, for me, it comes down to helping others. You may never know when your story has made an impact on another person.
In your opinion, what can patients, health professionals, and advocacy groups do to continue raising awareness about valve disease?
Patients need to keep sharing their stories when they are comfortable doing so. Social media is a great and easy way to start. Join a support group on Facebook and reply to a post that you relate to. They can also find organizations that help others and volunteer their time. Health professionals can keep doing their amazing job at diagnosing valve disease, offering materials to help the patient and their family understand the disease, as well as speaking at webinars, both in-person and on-line. Advocacy groups are already doing amazing work in using the media tools to continue to broaden the awareness of valve disease
What is one fun fact about you that others may not know about you?
I am a national sailing champion!
