Can you share your experience with heart valve disease?
My journey has been a wild ride of health challenges spanning three decades. In 2017, I was hit hard with severe tricuspid valve regurgitation, severe congestive heart failure and atrial fibrillation.
By 2019, I was not a good candidate for surgery, and I spent the next 2 years in hospice with hope dwindling fast! My cardiologist suggested an urgent referral for a clinical study in Portland, Oregon, almost five hours away from me. I said yes immediately. There was nothing else to think about, the choice was hope or death.
In September 2020, I participated in several tests to qualify for the study. Unfortunately, I didn’t make the cut; my annulus was too big for the largest EVOQUE valve. But I remained determined, sticking to a low-sodium diet, holding on tighter and hoping for another chance.
That chance came in October 2020. I was hospitalized as they attempted to induce diuresis, a method to help the body remove extra fluid, hoping to reduce the size of the annulus. The diuresis was successful in decreasing the annulus but not enough for me to qualify! So close yet so far!
November 2020 while I began working on critical documents such as wills and funeral arrangements. I received an unexpected call from my doctor with the news that I was accepted into the study.
I had my procedure in January 2021. After 833 days of fighting for my life, I won the battle. The procedure was a complete success!
What encouraged you to become a patient advocate?
What encouraged me to become a patient advocate is the realization of how many others need and deserve the same chance that I received. The profound impact the TTVR EVOQUE had on my life was transformative, offering me relief, hope, and a return to normalcy. My story is just one among many, and I believe that by sharing it, I can inspire changes that will benefit countless others.
I’m not advocating just for myself but for a community of patients who deserve the opportunity for a renewed life. By sharing my story, I hope to drive the changes needed to make opportunities like these available to those in need.
How did you become involved with Heart Valve Voice US, as well as other heart health advocacy organizations?
In 2023, Edwards LifeSciences reached out to me about doing a mini documentary on my life after the Transcatheter Tricuspid Valve Replacement (TTVR) procedure. At first, I was surprised and a little nervous, but I soon learned how important it was to share my story. Having that experience lit a fire within me to help bring awareness to others.
Heart Valve Voice US also invited me to share my story with the Center of Medicare Services (CMS), and I am honored to currently participate with them in a two-year panel study with RTI/FDA. The objective is to provide patient preferences and experience data to inform device development and regulatory benefit-risk assessment. This journey has been more than just telling my story — it’s been about making a difference and helping others find their way through similar challenges.
Why do you think it is important for other patients living with heart valve disease to share their story?
Sharing our stories raises awareness about heart valve disease and its impact. By sharing our experiences, we bring into focus the diverse ways this condition affects our lives, which can lead to more research, better treatment options, and improved support services. Telling our stories also empowers us to take an active role in our own health journey.
In your opinion, what can patients, health professionals, and advocacy groups do to continue raising awareness about valve disease?
Health professionals are doing a great job raising awareness about valve disease. To reach more people, health professionals can use social media to share information and partner with influencers and patients. In addition, hosting free community screenings and dedicating a week to valve disease education in clinics can also help. Adding valve disease info to telemedicine visits and supporting patient ambassador programs can also ensure more people understand the importance of early detection and timely care.
What is one fun fact that others may not know about you?
I previously served in the Army.
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