A crossover episode with Stewart Liang of Heart2Hearts

In this special crossover episode of The 1% Heart, I’m 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 & 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 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 Kieme, 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.

How advocacy influences public policy and the charities and organizations fighting for heart patients

In the second episode of The 1% Heart, I'm joined by Mark Roeder, President and CEO of the Adult Congenital Heart Association. With decades of experience in public relations and strategic planning, Mark is the perfect champion for legislation that supports CHD patients.

Our conversation explores the challenges of raising awareness for Congenital Heart Defects, the importance of lifelong care, and the recent passage of the Congenital Heart Futures Reauthorization Act (CHFRA). Mark shares insights on the role of ACHA in supporting adults with CHD, the significance of transitioning from pediatric to adult care, and how patients and families can get involved in advocacy efforts.

The conversation highlights the need for continued support and awareness for this growing population.

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.

A brutally honest discussion of the Congenital Heart Defect care experience from very different perspectives.

In the first episode of 1% Heart, I’m joined by Aliza Marlin, a CHD patient, influential advocate, and a ray of positivity. Together, we relive our personal experiences with CHD care through a raw, candid, heart-to-heart discussion.

We explore the realities of diagnosis, treatment, and the often challenging transition from pediatric to adult care, comparing good and bad heart care.

This conversation highlights the power of community support, the importance of self-advocacy, and the critical role of communication in healthcare. Aliza's optimistic approach, alongside my reflections, underscores the resilience of CHD patients and the importance of finding the right care.

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.

Coming out next month! In the meantime, you can check us out at ww.onepercentheart.com and follow us on Instragram @theCHDpodcast. The 1% Heart is a podcast inspired by the 1% of people born with a congenital heart defect (CHD). Through heartfelt stories and expert interviews, we highlight the lived experiences of patients, while exploring the medical advancements and advocacy shaping the future.