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.

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.

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.

Navigating the relationship between CHDs and exercise

In this episode, we get to hear from a rock climber with a mechanical valve. Bob Smith, an English teacher from Colorado, takes us through his CHD journey and his experience with a mechanical aortic valve. Since his valve replacement, he's climbed Mt. Rainer, El Capitan, and a long list of other expert trails.

The conversation highlights the different activity levels of patients and how some patients push the limits of what's possible - and redefine what it means to have a CHD.

You can learn more at: www.myaorticadventure.blogspot.com

Disclaimer & Trigger Warning: Nothing in this episode constitutes medical advice. Always listen to your Doctor's advice when it comes to exercise limitations. 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.

The Peer Mentor Program and having someone who gets it

In this special episode of The 1% Heart, we learn about peer support in the CHD community and the Adult Congenital Heart Association's Peer Mentor program. We get to meet two mentors: Rick Puder, who has been with the program since it started, and Jennie Fox, who was a mentee before becoming a mentor herself.

Together, we discuss the importance of patients today learning from patients that have walked in their shoes. The ACHA's Heart to Heart peer mentor program is not only for patients, its for family members and significant others as well. You can sign up using the link below.

And if you don't need a mentor, then be a mentor.

https://www.achaheart.org/your-heart/programs/heart-to-heart/

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.

How CHD medical trauma can influence mental health

In the fifth episode of The 1% Heart, I get the opportunity to learn from Meghan Stewart of Hands to Heart Therapy. Meghan is a CHD patient and registered clinical counselor, providing a unique perspective on the CHD patient experience. Together, we explore Meghan's personal journey with CHD, the importance of understanding pediatric medical trauma, and the role of family dynamics in healing.

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.

A crossover episode with Stewart Liang of Heart2Hearts Podcast

In this special crossover episode of The 1% Heart, I am joined by Stewart Liang, the UK-based advocate and creator of the Heart2Hearts podcast. We take a deep dive into the contrasting landscapes of CHD care in the United States and the United Kingdom, exploring how healthcare systems and costs impact patient experiences on both sides of the Atlantic.

Our conversation covers the origins of Heart2Hearts, created during the pandemic as a space for sharing patient stories with a relaxed, approachable style. Stewart shares how streamlined continuity of care in the UK contributes to positive patient experiences, while we discuss the challenges in the US, where high healthcare costs and frequent provider changes often complicate the transition from pediatric to adult care. We also emphasize the power of community and advocacy, examining how both Heart2Hearts and The 1% Heart aim to foster a supportive network for CHD patients and families.

This episode underscores the shared struggles and hopes within the CHD community, as well as the importance of fundraising and advocacy to improve care quality worldwide. Stewart’s belief in the impact of storytelling offers a hopeful reminder: sharing experiences can provide patients with connection, comfort, and encouragement, no matter where they are.

Disclaimer & 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 always advised.

How raw advocacy is changing how patients are viewed by society

In the third episode of The 1% Heart, I'm joined by Bethany and Hannah Keime, the founders of HeartCharged and CHD Patients.

Our conversation delves into the impact of social media in connecting patients, raising awareness, and the gender disparities that exist in cardiac care. Bethany and Hannah highlight the need for better healthcare representation and discuss ways patients can empower themselves through knowledge and community connections. The episode concludes with personal reflections on the resilience of CHD patients and how accessible information and advocacy can save lives.

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.