In this episode of The CHC Podcast: Congenital Heart Conversations, co-hosts Annie Ulchak and Ayrton Beatty tackle the complexities of living with congenital heart disease combined with other rare conditions.

Special guests Hope Simmons, Scott Salvaggio, and Julia Mayfield share their personal stories and the unique challenges they face, from hospitalizations and multiple diagnoses to self-advocacy and forming supportive communities. The episode highlights the importance of understanding your own health conditions, advocating for proper care, and finding a supportive network.

The discussion also addresses common issues like ADHD, autism, and mental health, offering practical advice for navigating these layered health challenges. Join us for an enlightening conversation that aims to bring awareness and hope to those living with multiple rare conditions.

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(00:00:00) How Fathers Navigate the World of Congenital Heart Defects

(00:10:58) Advice for CHD Fathers

Fatherhood transforms when your child has a congenital heart defect—or when you're a heart warrior becoming a dad yourself. This powerful episode brings together fathers from across the CHD spectrum to share their journeys of strength, vulnerability, and unexpected wisdom.

Shaun Jones takes us through the harrowing early days with his son Ledger, who underwent his first open-heart surgery at just two weeks old. "I honestly feel incredibly blessed that I even get to celebrate Father's Day," he shares, describing how each milestone carries profound meaning in their household. His approach of taking "one day at a time" offers a blueprint for managing overwhelming uncertainty.

Joe Flowers provides the unique perspective of someone born with tricuspid atresia who became a father himself. Now facing heart failure at 44, he offers raw insights about emotional vulnerability: "I learned from a very early age to tough things out... and I just learned to shove that emotion down." His journey through addiction recovery has taught him the importance of allowing children to express their fears openly—something he wishes he'd experienced himself.

Frank Jaworski, father to 30-year-old Hope who was born with a single ventricle heart, shares how parenting a heart warrior reshaped his perspective: "When things happen that drive me crazy... I try to put them in perspective and say they're not in the hospital, they're not having open-heart surgery." As both a healthcare professional and a CHD dad, he emphasizes the value of understanding both the technical and emotional sides of your child's condition.

Throughout these conversations emerges a portrait of fatherhood marked by profound gratitude, unexpected strength, and the discovery that sometimes our greatest teachers are our children themselves. As Shaun poignantly observes about his son: "If my child can go through two open heart surgeries, he can do anything... I'm actually learning from him."

Listen now for insights that will transform how you think about fatherhood, resilience, and what it means to parent with your whole heart.






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In the 29th episode of The CHC Podcast, host Anna Jaworski, a heart mom to an adult with a single ventricle heart, and co-host Annie Ulchak, along with co-producers Nicholle Bilodeau and Guy Simkhay, discuss family planning choices for adults born with critical congenital heart defects (CHD). The episode features guests Amy Erhart and Meagan Houpt, both born with Hypoplastic Left Heart Syndrome (HLHS), who share their unique paths—choosing a child-free life and adopting, respectively. The conversation delves into the medical, social, and personal decisions impacting family planning, societal expectations, and the challenges and supports experienced along the way. The episode also addresses the impact of genetics, the challenges of adoption, and the emotional complexities involved in these life-altering decisions.

Hearts Unite the Globe: https://www.heartsunitetheglobe.com

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In this episode of The CHC Podcast: Congenital Heart Conversations, co-hosts Jason Crutchley and Jess Cowin, delve into the complex lives of multiple transplant recipients. Guests Krysta Falloon and Chuck Estrada share their poignant journeys through heart transplants necessitated by congenital conditions, providing a raw look at the ongoing challenges faced post-transplant. The discussion touches on the emotional and physical tolls, medical innovations, and the stark reality that transplantation is a treatment—not a cure. Panelists discuss the broader implications on quality of life and navigate the misconceptions about transplants. This episode is a deep dive into resilience, medical advancements, and the relentless quest for normalcy.

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(00:00:00) Introduction and Host Welcome

(00:00:42) Meet the Co-Hosts and Panelists

(00:02:23) Discussion on Disclosing Heart Conditions to Employers

(00:05:20) Accommodations and Modifications in the Workplace

(00:09:46) Insurance Benefits for CHD Employees

(00:12:20) Networking and Job Search Tips

(00:14:07) Interviewing Etiquette and Legalities

(00:19:43) Audience and Q & A Session

(00:29:58) Panelist Reflections and Takeaways

(00:40:02) Conclusion and Next Episode Preview

(00:40:02) Conclusion and Next Episode Preview

Employment issues affect many members of the congenital heart community in unique ways that require awareness of rights, accommodations, and strategic approaches to the job market. Talent acquisition expert Nicholle Bilodeau and HR professional Sherein Miceli offer invaluable insights from both sides of the hiring desk.

• When to disclose your heart condition to employers depends on personal preference and whether accommodations will be needed
• Americans with Disabilities Act protections allow for workplace accommodations without waiting periods
• Insurance benefits should be carefully evaluated to ensure your cardiologists and specialists are covered
• CHDers bring unique strengths to the workplace including perseverance and adaptability to change
• Networking is crucial in today's job market, with 90% of interviews coming through professional connections
• Resumes should be tailored to each position and limited to two pages, focusing on relevant recent experience
• Employers legally cannot ask about medical conditions during interviews
• Interview notes can be requested within one year if you suspect discrimination
• Passion for your work can be a powerful selling point during interviews when appropriately shared

Join us next month for our episode about secondary transplants, exploring what happens when heart transplant recipients need another transplant.

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What if your personal journey with a congenital heart defect could shape a meaningful career in healthcare? Join us as we explore this compelling intersection of life experience and professional aspiration. Our guests, including Lorrie Hill, Christy Stillman, and Roslyn Rivera, share their remarkable transitions from CHD patients to healthcare professionals. Their stories illustrate not just the resilience and determination demanded by their journeys, but also the unique perspective they bring to their roles as medical caregivers and advocates.

Lorrie, Christy, and Roslyn provide insights into how personal history fuels their passion for advocating better care and support for CHD patients worldwide. Discover how Christy's transformative work in creating transition programs for CHD patients is changing lives, and hear from Lorrie about her dedication to educating patients with accessible medical information. Listen as Annie Ulchak, one of our hosts, discusses the importance of effective communication and the global push for improved care standards, ensuring that CHD patients receive tailored and comprehensive care.

Our heartfelt discussions also cover the emotional and physical challenges faced by adults with CHD, from post-operative recovery to navigating employment issues. Explore the importance of empathy and mental health support in enhancing patient care, and learn about the collective effort needed to overcome barriers in healthcare for the CHD community. We wrap up this episode by inviting you to continue the conversation on social media and encourage support for our ongoing advocacy through our website.

Become a Patron! Visit our website: https://www.heartsunitetheglobe.com or support us on Spreaker: https://www.spreaker.com/podcast/the-chc-podcast-chd-conversations--5779157/support

The CHC Podcast: Congenital Heart Conversations has reached a remarkable milestone with its 25th episode, and the team is bursting with excitement and gratitude. What started as a simple idea has blossomed into a powerful community platform that connects, supports, and empowers families touched by congenital heart defects.

At the heart of this podcast is a passionate team driven by personal experiences and a shared mission.

Each team member brings a unique perspective - from Ayrton's efforts to expand their reach across social media platforms to Nicole's dedication to highlighting the challenges faced by adults with late CHD diagnoses.

The podcast has grown from a small project to a vibrant community resource. By sharing personal stories, tackling complex medical experiences, and creating a safe space for conversation, they've built more than just a podcast - they've created a lifeline for many families navigating the complex world of CHDs.Behind the scenes, volunteer sound engineer Annie Ulchak ensures each episode sounds professional and engaging. The team's commitment goes beyond just recording - they're creating a supportive network that helps prevent isolation and provides hope for those affected by CHD.

As they look to the future, the CHC Podcast team remains dedicated to their mission. They continue to adapt, grow, and reach out to more people, transforming personal experiences into a powerful tool of support and understanding.

To everyone listening: you're not alone. This podcast is more than just audio - it's a community, a resource, and a beacon of hope for families facing congenital heart challenges.

To be a Patron, visit our Patreon page: https://www.patreon.com/HearttoHeart/overview
To be a Volunteer, visit our website: https://www.heartsunitetheglobe.com/volunteer
To be a Guest, visit our website: https://www.heartsunitetheglobe.com/be-a-guest

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Imagine having a heart condition and facing the daunting task of end-of-life planning—this is the reality that Ayrton Beatty, Megan Tones, and John Latsha bravely discuss on our latest CHC Podcast: Congenital Heart Conversations episode. Join us as John shares his compelling journey living with tetralogy of Fallot and the life-saving role of his implantable cardioverter device (ICD). We delve into the critical importance of MRI compatibility and the proactive steps necessary to maintain a high quality of life for those with congenital heart defects. Hear firsthand experiences and invaluable insights into navigating the complexities of medical and legal preparations.

Our conversation takes a deep dive into the legal intricacies of end-of-life documents across regions like Scotland, the UK, Australia, and the US. Together, we unravel the tangled web of wills, advance health directives, and DNR orders. Learn about the regional challenges, such as the NHS's medical record systems, and the relief that comes from having these documents in place ahead of time. Our guests share practical strategies for managing end-of-life documents in hospitals, emphasizing the stress relief that legal preparedness provides during critical moments.

The emotional and practical aspects of end-of-life discussions come to the forefront in this episode. Ayrton shares a unique vision for a non-traditional celebration of life, while John opens up about his candid conversations with his wife regarding cremation plans. We explore the cultural reluctance to discuss mortality and the peace that comes with organizing personal belongings and curating family history. Inspired by Swedish death cleaning and Marie Kondo, this episode encourages you to embrace end-of-life planning as an opportunity to share your legacy and ensure your wishes are honored across different healthcare systems.

Helpful Links (this is not medical or legal advice -- just some helpful places to get started on your own end-of-life planning. Always consult with a professional to get the most appropriate advice for your situation.
 
Free forms for USA citizens: https://www.freewill.com
Free information for UK citizens: https://www.amnesty.org.uk/free-wills-service
Information for Australians: https://australianwillkits.com.au/ -- cheap affordable legal documents

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Could you imagine mountain biking and suddenly facing a life-altering heart event? That's just part of Boots Knighton's gripping story, one of the incredible journeys we explore in this episode. Together with Nicholle Bilodeau and Rachael Gott, we uncover the unique experiences of those who’ve faced late diagnoses of congenital heart defects. From Boots’ heart attack that led to open-heart surgery to Nicholle’s struggle to maintain her weightlifting passion after discovering a bicuspid aortic valve, these stories provide a raw look into the challenges and resilience of living with these conditions. Rachael shares the shock of being diagnosed with hypoplastic left heart syndrome in her late 20s and how she navigates the adjustment from an active childhood to managing her condition today.

Our conversation delves into the emotional rollercoaster and practical decisions that come with living with congenital heart defects. Rachael candidly discusses her fears and hopes as she prepares for a major heart surgery, while Boots talks about embracing radical acceptance and adapting to new limitations. Nicholle's decision to opt for a tissue valve highlights her optimism about future advancements in heart technology. Through these powerful narratives, we emphasize the critical importance of advocating for oneself within the healthcare system and trusting one’s body. Join us for an unforgettable exploration of resilience, hope, and the power of acceptance in the face of heart health challenges.

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What if caring for someone else starts with caring for yourself? Join us in a heartfelt episode as we promise to uncover the often-ignored side of caregiving in the Congenital Heart Defect (CHD) community: the self-care of the caregivers. Our engaging conversation features insights from Roseanne Franco, a dedicated heart parent, and Mark DeRoo, who reveals how he and his wife Michelle turned the simple act of reading into a powerful self-care routine amidst the hustle of medical appointments. Together, we discuss the vital importance of nurturing oneself while supporting loved ones facing health challenges.

Throughout our discussion, we shine a light on the profound impact of community and support networks for those involved in CHD care. Roseanne shares her journey of leaning on faith, family, and friends while witnessing the heartwarming recognition of caregivers in her community. Mark and Michelle's story emphasizes communication and strategies for maintaining balance in relationships, offering a glimpse into how empathy and shared experiences can ease the complexities of caregiving.

Finally, we focus on the emotional landscapes navigated by caregivers, especially those grieving the loss of loved ones. Mark DeRoo adds his voice to the conversation, stressing the ongoing need for community support and awareness initiatives like the Ollie Hinkle Heart Foundation. We underscore the importance of empathy, gratitude, and open communication, urging listeners to advocate for caregivers as essential pillars in the healthcare journey. Whether you're a caregiver or someone supporting a loved one, this episode offers valuable insights and encouragement to prioritize self-care and community connections.
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If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com