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The One Percent Heart

The One Percent Heart

By: One Percent Heart
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About this listen

Welcome to The One Percent Heart Podcast, inspired by the 1% of people born with a congenital heart defect (CHD) and the journey they navigate at every stage of life. Through heartfelt stories and expert interviews, we highlight the experiences of children and adults living with CHD, while exploring the medical breakthroughs shaping their future. Why does this matter? CHDs are often overlooked, yet they affect millions. We’re here to change that — raising awareness, offering support, and building a more connected community for patients, families, and healthcare providers.One Percent Heart Hygiene & Healthy Living
Episodes
  • Episode 9: Close to the Chest
    Mar 31 2025

    Transforming Personal Trauma into Powerful Advocacy

    In this episode of the One Percent Heart, I'm joined by Brook Dorris, a patient advocate, special education teacher, and member of the Nashville Walk for 1 in 100's planning committee. Brook shares her extraordinary journey of navigating life with congenital heart defects, including double inlet left ventricle, transposition of the great vessels, and dependency on an internal pacemaker. After facing more than 15 heart surgeries - half of them open-heart - Brook speaks openly about her struggles, triumphs, and the unexpected ways her experiences shaped her advocacy journey.

    Together, we dive into the emotional complexities of managing friendships, college life, and personal relationships while dealing with chronic illness. Brook emphasizes the importance of community support, the transformative role of heart camps, and the critical need for effective patient transition programs into adult congenital heart care. Through candid anecdotes and thoughtful reflections, Brook demonstrates how embracing one's story, even when it feels like "trauma dumping," can lead to healing and powerful advocacy.

    Don't miss Brook's inspiring speech at the Nashville Walk for 1 in 100 on April 5th. Details in the link below!


    https://support.achaheart.org/event/2025-nashville-walk-for-1-in-100/e648461


    Disclaimer & Trigger Warning: Nothing in this episode constitutes medical advice. These are our personal experiences, opinions, and stories. This podcast contains honest discussions of medical trauma, adult language, and adult content. Listener discretion is advised.



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    47 mins
  • Bonus: Peer Support Program
    Feb 8 2025

    How Peer Mentors Change the Game for CHD Patients and Families

    In this special episode ofThe 1% Heart, we highlight the power of peer mentorship and the incredible impact of theAdult Congenital Heart Association’s (ACHA) Peer Support Program. This program connects CHD patients, family members, and partners with trained mentors who truly understand the journey—because they've lived it.

    Our guest isKarla Deal, the program coordinator for ACHA’sHeart to Heart Peer Support Program—and a CHD patient herself. Karla shares her personal journey withCHD, how mentorship changed her perspective, and whypeer support is so crucial for navigating lifelong CHD care.

    Together, we explore:
    🔹 How thepeer mentor program works and who it’s for
    🔹 Thethree pillars of mentorship: Education, Self-Advocacy, and Empowerment
    🔹 The impact of finding someone who truly "gets it"
    🔹 What makes a great mentor and why the program needsyou


    Right now, ACHA isrecruiting new peer mentors—patients and family members alike! If you’ve ever wanted togive back to the CHD community, this is your chance.Applications close on February 18th, and you can find the link in the show notes or on ACHA’s website.


    💡If you don’t need a mentor, go be a mentor.

    Links & Resources:📌Apply to be a mentor or request one:ACHA Peer Support Program
    📌Contact Karla Deal:kdeal@achaheart.org

    Disclaimer & Trigger Warning: Nothing in this episode constitutes medical advice. These are our personal experiences, opinions, and stories. This podcast contains honest discussions of medical trauma, adult language, and adult content.


    Listener discretion is advised.


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    44 mins
  • Episode 8: Waiting for a Heart
    Feb 3 2025

    Heart Failure and the Transplant Process


    In this episode of The 1% Heart podcast, we hear from Bailey Vincent, a congenital heart patient currently undergoing evaluation for advanced therapies due to heart failure. Born with Epstein’s Anomaly and Wolf-Parkinson-White syndrome, Bailey shares her journey through the challenges of managing a complex heart condition while balancing work, health, and personal responsibilities.

    The conversation explores the importance of self-advocacy, the need for a supportive healthcare team, and the delicate balance of managing work, health, and family responsibilities. Bailey offers an honest perspective on the emotional and logistical hurdles of waiting for a potential heart transplant while also emphasizing the resilience, strength, and support found within the CHD community.

    Her story serves as a potent reminder that while CHD presents lifelong challenges, it also fosters a deep sense of community and perseverance.


    Disclaimer & Trigger Warning: Nothing in this episode constitutes medical advice. These are our personal experiences, opinions, and stories. This podcast contains honest discussions of medical trauma, adult language, and adult content.


    Listener discretion is advised.

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    41 mins

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