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12. End-of-Life Planning for Congenital Heart Patients
57:22||Season 2, Ep. 12Imagine 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.comFree information for UK citizens: https://www.amnesty.org.uk/free-wills-serviceInformation for Australians: https://australianwillkits.com.au/ -- cheap affordable legal documents
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11. Resilience and Acceptance
29:01||Season 2, Ep. 11Could 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
10. Nurturing the Nurturers
56:10||Season 2, Ep. 10What 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.If you enjoyed this episode and would like to support the program, please join our Supporter's Club: https://www.spreaker.com/podcast/the-chc-podcast--5779157/supportIf you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com
9. Survival Against the Odds
52:12||Season 2, Ep. 9In the latest episode of the CHC Podcast: Congenital Heart Conversations, hosts Anna Jaworski and Annie Ulchak discuss the experiences of living with congenital heart disease (CHD) as adults, focusing on those who have had zero or only one open-heart surgery. Panelists Amy Erhart, Ben Johnson, and Michelle DeRoo share their personal stories, childhood experiences, adaptations, and medical journeys.The discussion also covers the importance of fitness, nutrition, and mental health in managing CHD. Producers Nicholle Bilodeau and Ayrton Beatty participate by providing their insights and managing the episode. The show highlights the challenges and triumphs of CHD patients, providing inspiration and advocacy for the global heart community.If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com
8. Enduring Sibling Struggles
49:34||Season 2, Ep. 8In this episode of The CHC Podcast, hosts Anna Jaworski and Ayrton Beatty discuss the emotional and life-changing impacts heart transplants have on the siblings of heart warriors. Joined by a special panel of guests, Roy Simkhay, Michelle Steltzer, Stephen Guerin, and Amy Cowin, they explore personal stories, challenges, and the deep connections forged through the shared experiences of managing congenital heart defects and transplants. Produced by Annie Ulchak and Guy Simkhay, the episode delves into the complexities of supporting a sibling through life-threatening health issues and the unique journey of resilience and hope.Featured Guests include: Amy Cowin, Stephen Guerin, Roy Simkhay, and Michelle Steltzer.Co-Hosts for this episode are: Anna Jaworski and Ayrton Beatty.Co-Producers for this episode are: Annie Ulchak and Guy SimkhayVolunteer/Patron: Frank JaworskiIf you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com
7. Siblings in the Congenital Heart Defect Community
01:01:31||Season 2, Ep. 7Parents of children with congenital heart defects may worry that their afflicted child's siblings will have a rough go of things considering the hospitalizations, doctor's appointments, therapy treatments, and more. They may worry that siblings will resent the extra time they need to spend with their medically fragile children.This episode features four adults who grew up with a brother or a sister who was born with a congenital heart defect. Tune in to hear what struggles they faced, how their families handled having frequent doctors' appointments, and surgical procedures, and why a tight family unit is so critical for helping children develop compassion, empathy, and a deep love for their siblings.Featured Guests include: Amy Cowin, Stephen Guerin, Roy Simkhay, and Michelle Steltzer.Co-Hosts for this episode are: Anna Jaworski and Ayrton Beatty.Co-Producers for this episode are: Annie Ulchak and Guy SimkhayVolunteer/Patron: Frank JaworskiIf you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com
6. Living with Heart Rhythm Challenges
01:01:07||Season 2, Ep. 6Ever wondered how congenital heart disease (CHD) and heart rhythm disorders intertwine? Join us for a compelling episode where Dr. Samuel Asivatham (Dr. Sam) from the Mayo Clinic, volunteer Ayrton Beatty, and CRNA Frank Jaworski share their invaluable insights. Dr. Asivatham takes us through the latest in managing fast and slow heart rhythms, including cutting-edge procedures like ablation and defibrillator placement. Ayrton gives a heartfelt account of living with drug-induced long QT syndrome, while Frank provides a detailed overview from the electrophysiology lab.Navigate the complex landscape of treating heart rhythm issues in CHD patients. We discuss personalized diagnostic and treatment approaches, leveraging innovative tools such as 3-D printed hearts and virtual reality. Ayrton’s narrative highlights the emotional and practical challenges of managing long QT syndrome daily, offering a raw look into the realities faced by patients. We also explore the role of smartwatches in monitoring physical activities and touch on the interplay of rhythm disorders with other health conditions like osteoarthritis.Finally, stay ahead of the curve with advancements in congenital heart care and genetic heart arrhythmias. Dr. Sam discusses the exciting potential of gene therapy, while Frank shares specialized knowledge on anesthesia for patients with rhythm issues. Learn about the lifelong journey of CHD patients, from infancy to adulthood, and the evolving spectrum of heart rhythm challenges they face. Engage with us on social media and support our mission through Hearts Unite the Globe as we continue to provide crucial information and advocacy for the CHD community.If you enjoyed this episode and would like to support the program, please join our Supporter's Club: https://www.spreaker.com/podcast/the-chc-podcast--5779157/supportIf you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com