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.