Filmmaker Sara-Jane Walsh joins us to share why she’s making Tested Love, a short documentary that focuses on fatherhood, faith, and mental health in the congenital heart disease community. We talk about how music can become a lifeline, how community support turns isolation into connection, and why honest storytelling can reach far beyond the hospital walls.

We also name what often stays unspoken: depression, anxiety, PTSD, survivor’s guilt, and the stigma around men seeking help. Danny shares what therapy changed for him, how he learned to advocate by asking hard medical questions, and what it means to show your kids that it’s okay to cry while still refusing to quit.

If you’ve ever lived through the cardiac ICU, supported someone with CHD, or wondered how families rebuild after crisis, this conversation is for you. Subscribe for more congenital heart conversations, share this with a heart family who needs it, and leave a review with your biggest takeaway.

Link to Here's Heart Hope Project: https://bit.ly/47Kf7q0

Here's Hope Project Facebook Page: https://www.facebook.com/hereshopeproject

Hosted on Acast. See acast.com/privacy for more information.

Hosted on Acast. See acast.com/privacy for more information.

Maureen Groden's book is entitled, When a Loved One is Dying: Conversations about Care, Connection, and Coping. Available at Amazon, Bookshop, and Barnes & Noble.

Chapters:

00:00 Introduction and Episode Overview

00:17 Meet the Hosts and Co-Producer

01:04 Introducing Today's Guests

03:34 Misconceptions About Hospice Care

06:14 Psychological Perspectives on Hospice

09:32 Palliative Care for Children

17:59 Communicating with Children About Death

22:19 Balancing Emotional, Spiritual, and Physical Needs

24:30 Changing Society's Approach to Death

31:46 Navigating Uncertainty with Congenital Heart Defects

35:05 Small Acts of Kindness

35:49 Learning from Life's Experiences

36:04 Hope and Quality of Life

36:34 Acknowledging Life's Realities

37:26 Panelists' Closing Remarks

38:09 Heartwarming Stories and Resources

39:01 End of Life Care Discussion

39:50 Importance of Acceptance and Preparation

40:59 Personal Experiences with End of Life

44:34 Role of Medical Professionals

53:08 Children and End of Life Conversations

58:37 Final Thoughts and Takeaways

01:04:37 Upcoming Changes and Farewell

Hosted on Acast. See acast.com/privacy for more information.

Hosted on Acast. See acast.com/privacy for more information.

Guests Ben Weisbuch, a survivor of 135 sudden cardiac arrests and founder of the Heart Hope Foundation, and Dr. John Rogers, a cardiologist specializing in heart rhythm disorders and advocate for CPR and AED education, join them.

The episode explores Ben's astonishing survival story, the genetic discovery linked to his condition, the latest advances in prevention and treatment, and the critical role of community awareness and education in saving lives.

Hosted on Acast. See acast.com/privacy for more information.

Facebook: BraveLittleHeartsSA

https://web.facebook.com/BraveLittleHeartsSA

LinkedIn: Brave Little Hearts South Africa

https://www.linkedin.com/in/brave-little-hearts-south-africa-611b35b9/?originalSubdomain=za

YouTube: Brave Little Hearts S. A.

https://www.youtube.com/channel/UCqfb7gcR5ofGH-G7i4M1w5w

Email: blhsachd@gmail.com

Fundacion Estrellita de Belen: https://www.fedbhearts.org

Instagram @estrellitadbelen

Hosted on Acast. See acast.com/privacy for more information.

Two couples, Jason and Jen Crutchley, as well as Mark and Michelle DeRoo, share their stories of navigating marriage, medical uncertainties, and daily routines while dealing with CHD. They discuss how communication, mutual support, and understanding have helped them succeed as a couple. The episode also touches on the emotional and logistical aspects of living with CHD and provides strategies for maintaining intimacy and partnership during difficult times. Both couples offer insights and advice for newlyweds or couples beginning their journey together in the CHD community.

Other Episodes You May Enjoy:

Heart Stories: Triumphs and Trials of Multiple Transplants -- https://www.spreaker.com/episode/heart-stories-triumphs-and-trials-of-multiple-transplants--65819796 (featuring Jason Crutchley as a Co-Host)

Voices of Victory: Overcoming Congenital Heart Challenges -- https://www.spreaker.com/episode/voices-of-victory-overcoming-congenital-heart-challenges--58745010 (featuring Michelle DeRoo as a Guest)

Nurturing the Nurturers: Insights into CHD Caregiving -- https://www.spreaker.com/episode/nurturing-the-nurturers-insights-into-chd-caregiving--62573179 (featuring Mark DeRoo as a Guest)

The Pulse of Perseverance: Unveiling the Heart Transplant Experience -- https://www.spreaker.com/episode/the-pulse-of-perseverance-unveiling-the-heart-transplant-experience--59714311 (featuring Jason Crutchley as a Co-Host)

Transplantation in the CHD Community -- https://www.spreaker.com/episode/transplantation-in-the-chd-community--57464324 (featuring Jason Crutchley as a Co-Host)

Town Hall Meeting: Feeling Different -- https://www.spreaker.com/episode/town-hall-meeting-feeling-different--53698411 (featuring Jason Crutchley as a Guest)

Hosted on Acast. See acast.com/privacy for more information.

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.

Hosted on Acast. See acast.com/privacy for more information.

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.

Hosted on Acast. See acast.com/privacy for more information.

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

Hosted on Acast. See acast.com/privacy for more information.

Hosted on Acast. See acast.com/privacy for more information.

• 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.

Hosted on Acast. See acast.com/privacy for more information.

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

Hosted on Acast. See acast.com/privacy for more information.

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

Hosted on Acast. See acast.com/privacy for more information.

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

Hosted on Acast. See acast.com/privacy for more information.

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

Hosted on Acast. See acast.com/privacy for more information.

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/support

If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com

Hosted on Acast. See acast.com/privacy for more information.

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

Hosted on Acast. See acast.com/privacy for more information.

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 Simkhay

Volunteer/Patron: Frank Jaworski

If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com

Hosted on Acast. See acast.com/privacy for more information.

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 Simkhay

Volunteer/Patron: Frank Jaworski

If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com

Hosted on Acast. See acast.com/privacy for more information.

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/support

If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com

Hosted on Acast. See acast.com/privacy for more information.

Hava opens up about the emotional rollercoaster of her son's heart condition, from early diagnoses to a life-saving heart transplant. Her story highlights the indispensable role of medical professionals and the vital support from an online community of transplant patients and families. Discover how shared experiences and encouragement from others who have faced similar battles provided Hava with the strength to persevere during her son's recovery.

Advocacy and love shine brightly in this episode, with insights from Anna, Frank, and Regina on the importance of seeking second opinions and building strong relationships with medical providers. Hear how parental determination and the unwavering support of anesthesia providers have a profound impact on patient care. Stay tuned as we preview next month's topic, World Heart Rhythm Week, and invite you to continue the conversation on social media.

If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com

Hosted on Acast. See acast.com/privacy for more information.

The emotional landscape of a transplant recipient extends far beyond the operating room, intertwining with the silent battles of mental health and the delicate dance of caregiver well-being. In our heartfelt discussion, we peel back the curtain on the intimate moments of support from nurses, the inner turmoil of survivor's guilt, and the critical role of professional psychological support. Our conversation also spotlights the caregivers' journey, an often underrepresented narrative, as we explore the strategies for managing the immense responsibilities that accompany caring for a transplant patient. From college students juggling academic pressures to caregivers fostering their own networks of support, we emphasize the necessity of community and self-care for all involved.

Wrapping up our conversation, we reflect on the diverse narratives shared by transplant recipients and their caregivers. The candid discussions unearth the realities of accepting 'high-risk' organs and the personal triumphs following transplantation. Our exchange underscores the pivotal necessity of early, transparent conversations about the transplant process, the personalized nature of each journey, and the support systems that are the lifeline for those navigating this profound path. Join us as we continue to elevate these critical stories, fostering deeper understanding and connection within the CHD community.

If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com

Hosted on Acast. See acast.com/privacy for more information.

Tune in to this episode featuring Alexis Sinclair as she shares with The CHC Podcast team her experiences with her child who was born with PHACE syndrome. While the most obvious component of PHACE syndrome are red splotches on the skin called hemangiomas, the second most prevalent condition is a cardiac condition, usually coarctation of the aorta. Fully 41-67% of children with PHACE syndrome are plagued by congenital heart defects, and in the case of Alexis' daughter, this is the most concerning element of her rare disease.

PHACE Syndrome affects one in a million people that we know of. This syndrome was only fairly recently put into the medical journals. Over the last two decades, more treatments have become available and awareness is of paramount importance in getting help for those suffering from PHACE syndrome. 

Join our Hosts, Ayrton Beatty and Annie Ulchak as they interview Alexis Sinclair. In the second segment of the episode, you'll have a chance to hear from Volunteers and Patrons (if you'd like to join in future episodes, see the links below to become a Patron), and in the 3rd segment, Producers Anna Jaworski and Nicholle Bilodeau share their thoughts on the episode as well.

For more information, this link may be helpful:

PHACE Syndrome Community: https://www.phacesyndromecommunity.org/

If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com

Hosted on Acast. See acast.com/privacy for more information.

Embark on a journey through the evolving landscape of medical treatments and patient advice that has shaped the CHD community over the years. Our guests open up about the intricacies of their conditions, from truncus arteriosus to tetralogy of Fallot, and the unexpected ways these heart defects have influenced their career paths and personal growth. The courage to pursue dreams, the joy in advocating for others, and the unexpected twists along the way - these stories are not just about survival, but about thriving despite the odds.

This episode is more than just an exchange of experiences; it's a celebration of the indomitable spirit found within the heart survivor community. We touch on the power of parenting, the importance of self-advocacy, and the incredible progress in medical understanding. This episode is a testament to the shared bravery among patients, parents, and the medical teams who stand with them in the ongoing battle against CHD. Tune in to feel the heartbeat of a community united by challenges but defined by hope and perseverance.

If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com

Hosted on Acast. See acast.com/privacy for more information.

Throughout our discussions, we unravel the complexities of stem cell research and its profound implications for cardiac care. Marvel at Lucas's journey, a child whose life was dramatically altered by a stem cell trial, and learn about how this science is challenging the boundaries of traditional heart treatments. We dissect the nuances of various stem cell sources, the importance of genetic imaging, and the potential that bio repositories hold. Each story shared, each advancement highlighted, echoes our collective pursuit for solutions that aim to preserve the patient's native heart.

This episode isn't simply a compilation of medical marvels; it's a deep dive into the human experiences behind the diagnoses. We tackle the emotional terrain of CHD research, examining its intersection with mental health, and celebrate the incredible strides from the first heart transplant to the tantalizing possibility of in-utero interventions. Join us as we honor the resilience of families, the dedication of researchers, and the innovative spirit that fuels our continuous quest–all while offering solace and strength to those navigating the heart journey.

Other Related Podcast Episodes 

The Use of Stem Cells in Treatment for Hypoplastic Left Heart Syndrome (HLHS)

https://www.buzzsprout.com/62761/9949984

Advancements in Stem Cell Therapies and for HLHS Heart Warriors

https://www.buzzsprout.com/62761/494353

HeartWorks Update 2023

https://www.buzzsprout.com/62761/12191542

Stem Cells for HLHS Heart 

https://www.buzzsprout.com/62761/458172

Adult Stem Cell Success Story!

https://www.buzzsprout.com/62761/10633117

If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com

Hosted on Acast. See acast.com/privacy for more information.

Holidays with congenital heart disease don't just come with wrapped presents; they bring a package of adjustments and poignant reflections. Tune in as we uncover the silver linings within our families' "goodwill extravaganza," a touching new tradition born from the heart's resilience. Our panelists add color to this tapestry with their own celebrations; from the joy of postponed festivities that ensure everyone's included to the poignant incorporation of loved ones' memories, we highlight that the essence of the season goes beyond the conventional calendar and into the realm of cherished communal support.

The finale of our season brings us to the intimate corners of hospital wards during the holidays and the extraordinary ways families find to imbue these moments with joy. We share stories of hope and adaptation, from the warmth of virtual connections to the postponed holiday feasts waiting for the right moment. Co-Producers, Guy Simhkay and Anna Jaworski, who've both navigated life with CHD, lend their voices to celebrate the triumphs over hardships, the creation of new traditions, and the power of community. Join us as we embrace the season, not just through the festivities we know and love, but through the deeper connections that define what it means to be family.

Hosted on Acast. See acast.com/privacy for more information.

Being your own advocate when it comes to managing your medical conditions is crucial. That's the message Djinni, Anna Marie, and Nicholle passionately communicate in this episode. They drive home the need for proactive patient advocacy and the transformative impact of education in understanding medical conditions. Their firsthand experiences create a platform for open dialogue with our audience, fostering a supportive community for everyone affected by CHD. 

Finally, we delve into the intricate landscape of familial experiences with congenital heart defects. Shedding light on the emotional toll of living with a heart condition, we discuss the importance of monitoring and awareness. From the perspective of a heart mom and two adults with CHD, we delve into the profound benefits of mindfulness in managing anxiety. We wrap up by exploring the lived experiences of CHD patients, their unique challenges, and the importance of fostering gratitude and resilience. Thanks for joining us on this heart-to-heart episode, and continue the conversation with us on our social media platforms.

If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com

Hosted on Acast. See acast.com/privacy for more information.

Guy Simkay was born in Israel with dextro-transposition of the great vessels with double outlet right ventricle and a ventricular septal defect. He received his heart transplant at the age of 46 at The Mayo Clinic in Rochester, MN, but is hoping to move back to the New York City area soon.

Lorrie is a 26-year-old born with a complex single ventricle composed of right dominant complete AV canal and Double Outlet Right Ventricle. She had three palliative heart surgeries as she grew up providing her moderate relief. During her time in college, her single ventricle heart could not keep up. Since she was out of surgical options, she was listed for transplant in 2020 and received the gift of life over a year later. She is now using her new quality of life to become a Physician Assistant to give back to the CHD and transplant communities.

Jessica Carmel was born with hypoplastic left heart syndrome. She lived with a Fontan heart for years before needing a heart transplant. After her transplant, she still felt unwell and for over two years she lived with a lot of pain, migraines, and was unable to eat much of anything without getting sick. Jessica and her mother did a lot of research and believed that perhaps her gallbladder wasn’t working well. After a Herculean amount of advocacy work, her gallbladder was removed, and she got relief from the radiating pain she suffered from and her migraines, but her medical journey wasn’t over. Her kidneys started to shut down, and she needed a kidney transplant. Jessica has written about her medical odyssey in her book The Hearts of a Girl. Her sister Amy ended up donating the kidney she so desperately needed.

Co-hosts Jason Crutchley and Leslie Castro, both transplant recipients themselves, interview these three guests in the first segment. The second segment allows Patrons an opportunity to ask the guests questions and share their own stories.

The final segment allows the Co-Producers, Ayrton Beatty, and Anna Jaworski, an opportunity to share their feelings about the podcast.

Through many conversations during this podcast, we learn so much about cardiac transplantation in the CHD community. The discussion includes a historical perspective, certain medications and their potential side effects, and how these heart warriors have dealt with the journey to get, and keep, a new heart.

We hope you'll join this episode and continue the conversation with us on Facebook, Instagram and TikTok.

If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com

Hosted on Acast. See acast.com/privacy for more information.

This Town Hall Meeting deals with different aspects of being in relationships and being a part of the CHD community. These aspects range from being in a long-term, committed relationship, to being single and what challenges being a CHDer can find when looking for love.

We have a panel of Guests: Annie Ulchak, a Fontan survivor, has been married and divorced and is now in a committed relationship. Annie will share about some of the challenges of having a chronic illness while trying to create a sustainable relationship.

Brian Ramsay is a single ventricle patient. He has been married for three years to his wife, Tilly, whom he knew for four years prior to their marriage. Brian shares about the unique circumstances of having a congenital heart defect and being married to someone who also has health concerns.

Ayrton Beatty has drug-induced Long Q-T Syndrome and is bereaved of Edward, a brother who died of an undiagnosed CHD. Ayrton is non-binary and talks about some of the unique challenges of having an invisible condition and how people are often not as understanding or compassionate as they need to be in order for a relationship to blossom and grow.

Our Hosts for this program is a mother-daughter team. Anna Jaworski is also the Executive Producer of the podcast. She is Hope Jaworski's mother. Hope was born with a single ventricle heart and has a Fontan procedure and a Fontan revision plus a Maze procedure. Hope and Alla also share their own relationship considerations and struggles.

Finally, we have our Producer for this episode. Nicholle Bilodeau discovered she had a congenital heart condition in her 40s. This condition has complicated her decision to date and develop relationships. Having had open-heart surgery less than a year ago, Nicholle Bilodeau has a different perspective on living with a congenital heart defect.

Through many conversations in this episode, we gain advice from people of all ages. We also hear some lessons learned and glean some wisdom from those who have been there, in both short-term and sustained relationships.

We hope you'll join this episode and continue the conversation with us on FB and IG.

If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.org

Hosted on Acast. See acast.com/privacy for more information.

Those of us living with congenital heart defects are all too aware of how we can feel isolated, how our physical health has been compromised at different times in our lives, and anyone who has undergone open-heart surgery has suffered from medical trauma.

In this episode, we have three Guests, 2 co-hosts, Annie Ulchak and Ayrton, and the producer is Anna Jaworski.

Richard Schwindt is a therapist, a social worker, and the author of Emotional Recovery from Congenital Heart Disease and 25 other books. He is also a father and a grandfather. He and his grandson have both had multiple procedures for their congenital heart defects. Richard’s career in mental health has spanned over four decades and he enjoys helping patients, especially congenital heart patients, manage their anxiety and live life to the fullest.

Jennifer Angelone is a tetralogy of Fallot (or TOF) patient, licensed mental health clinician, and an advocate with Young Mended Hearts. Jennifer works with ECHO Dance Collaborative.

Melissa Kottelenberg is a Certified Holistic Health Coach who helps women take control of their health and wellness by helping them prioritize nutrition, exercise, healthy lifestyle habits, and natural solutions so they can live focused and energized lives. She’s also a mom of five and ‘heart mom’ to 14-year-old Tyson, who was born with severe congenital heart defects which required three open-heart surgeries by the time he turned 2 years old.

The 2nd segment included Patrons of the podcast who interacted with the co-hosts and the guests.

In the 3rd segment, producer, Anna Jaworski, also joined the conversation.

Jennifer's Social Media Information:

Intagram: @doublenjenn16

TikTok: @doublenjenn16

Richard's Social Media and Book Information:

@rgschwindt (Twitter)

Richard Schwindt (LinkedIn)

All books on Amazon

Melissa's Social Media Information:

Website: http://www.essentiallivingwithmelissa.com

IG: https://www.instagram.com/essential_living_with_melissa

FB: https://www.facebook.com/essentiallivingwithmelissa

LinkedIn: https://www.linkedin.com/in/melissakottelenberg

Hosted on Acast. See acast.com/privacy for more information.

During our candid conversation, these fathers opened up about everything from their fears and concerns during pregnancy to the joy of welcoming a healthy child. We explored the role technology and social media play in providing support and boosting confidence as parents navigate this complex journey. We also spoke about the power of financial assistance and the challenge of managing the costs associated with CHD. But perhaps most importantly, our guests shared their stories of resilience, strength, and the unique challenges they face as fathers in the CHD community.

As we wrapped up our conversation, we talked about the importance of challenging negative stereotypes about dads in the CHD community. It's a testament to the incredible dedication and hard work of all parents—both mothers and fathers—in this community. Join us to hear these inspiring stories and discover what fatherhood really means in the CHD community.

Helpful Links:

The Heart of a Father -- the book Anna mentioned in the show --

https://www.babyheartspress.com

Many thanks to Myles Schweitzer -- the Wild Mooseman Band for our music. We love you, Myles!

To support our show, please join our Patreon team:

https://www.patreon.com/HearttoHeart

Hosted on Acast. See acast.com/privacy for more information.

Misty O'Leary talks with Anna about being raised as a Heart Warrior, her surgeries, and her pregnancies. She also shares with Anna what it's like to raise her daughter alone and how she is also her mother's caretaker.

In the last segment, Anna and Joe talk about what they've learned and how they felt about the episode.

Helpful Links:

The Heart of a Mother -- the book Anita wrote an essay for

https://www.babyheartspress.com

Many thanks to Myles Schweitzer -- the Wild Mooseman Band for our music. We love you, Myles!

To support our show, please join our Patreon team:

https://www.patreon.com/HearttoHeart

Hosted on Acast. See acast.com/privacy for more information.

How does having a critical illness affect YOUR faith and/or religion? Today we have an expert panel. Brenton Ball is a heart patient who has undergone many open-heart surgeries over the course of his life. He was raised Catholic. Ayrton Beatty is a bereaved family-member-turned-heart warrior in her own right. Ayrton considers herself a spiritualist. And our third panelist is Nancy Jensen, a bereaved heart mom to Jessica and is a member of the Church of Jesus Christ of Latter-Day Saints, also known as the Mormon religion.

Join us as we discuss the significance of religion when dealing with chronic illness. We also discuss differences in religious practices when considering Catholicism, Mormonism, and Spiritualism.

The second segment involves questions for the panelists from our Patrons, guests, and co-hosts. The final segment is a conversation between the co-producers and the co-hosts.

Many thanks to Myles Schweitzer -- the Wild Mooseman Band for our music. We love you, Myles!

To support our show, please join our Patreon team:

https://www.patreon.com/HearttoHeart 

Hosted on Acast. See acast.com/privacy for more information.

But what does that mean? In this episode, Hearts Unite the Globe Patrons, and Volunteers come together to discuss what that means to them. They’ll discuss some very specific ways they feel different — Jason Crutchley discusses what it means for him to require a heart transplant AND a liver transplant. Allison Holmes talks about surviving open-heart surgery and cancer. Leslie Castro talks about living with a congenital heart condition as a military spouse.

Co-Hosts, Annie Ulchak and Scott Salvaggio also share their own unique perspectives and problems. All of these adult heart warriors also share hard-earned wisdom and advice with Listeners. The second segment features questions and stories from HUG Patrons heart dad Frank Jaworski, heart warrior Hope Jaworski, and heart dad Michael Liben.

In the final segment of the show, Co-Producers, heart mom Anna Jaworski and heart warrior Nicholle Bilodeau talk about what surprised them about the show and what they learned. They also share some of their own personal experiences.

Many thanks to Myles Schweitzer -- the Wild Mooseman Band for our music. We love you, Myles!

To support our show, please join our Patreon team: https://www.patreon.com/HearttoHeart

Hosted on Acast. See acast.com/privacy for more information.

The "Heart to Heart with Anna" Monkey Lungs! episode: https://www.buzzsprout.com/62761/12242283

Richard Schwindt's "Heart to Heart with Anna" episode where he talked about Monkey Lungs:

https://www.buzzsprout.com/62761/12209194

Amazon link to "King of Hearts"

https://www.amazon.com/King-of-Hearts-G-Wayne-Miller-audiobook/dp/B00009KEJ8/ref=sr_1_1?crid=3IVGK1AQLO4FO&keywords=the+king+of+hearts+walt+lillehei&qid=1680327720&s=books&sprefix=the+king+of+hearts+walt+lillehei%2Cstripbooks%2C112&sr=1-1

Many thanks to Myles Schweitzer -- the Wild Mooseman Band for our music. We love you, Myles!

To support our show, please join our Patreon team:

https://www.patreon.com/HearttoHeart

Hosted on Acast. See acast.com/privacy for more information.

In this episode, we learn more about Heidi Scoggins and her recent scare with being diagnosed with a congenital heart defect as a young adult. Victoria Scoggins is Heidi Scoggins' aunt and she was also born with a congenital heart defect. Rita Scoggins is Victoria's mother and Heidi' grandmother.

In this episode, you'll learn more about these three women, including how they are working to take care of their heart health, what their heart conditions are, and how they're using their heart conditions to inspire others.

Wear Purple for CHD Awareness Day:

https://www.facebook.com/events/1268452243712195

Hosted on Acast. See acast.com/privacy for more information.

In this inaugural episode, Anna and Joe talk about who they are, why they started this podcast, and what the first season is going to look like.

January -- Inaugural Episode

February -- Heart Month! Meet the Scoggin Family and learn about the "Wear Purple for CHD" campaign!

March -- The History of CHDs and CHD Surgeries

April -- 1st Town Hall Meeting -- Let's talk about Feeling Different

May -- Mother's Day Month! Let's celebrate with a special single moms episode!

June -- Father's Day Month! Let's talk to some dads living in the CHD community.

July -- 2nd Town Hall Meeting -- Let's talk about Faith and Religion

August -- 3rd Town Hall Meeting -- Let's talk about Mental Health Issues in the CHD Community (Survivor's Guilt, PTSD, Depression)

September -- 4th Town Hall Meeting -- Let's talk about Divorce in the CHD Community

October -- Vaccines in the CHD Community

November -- 5th Town Hall Meeting -- Let's talk about Bullying

December -- 6th Town Hall Meeting -- Let's talk about the Holidays! (Holidays while hospitalized, holiday traditions, the dangers of large family gatherings, and recipes!)

How can you get involved? Become a Producer! Help us with social media! Join us in writing scripts for our shows! Learn how to be a Sound Engineer! We love working with Volunteers. Just contact Anna (Anna@TheCHDPodcast.com) or Joe (Joe@TheCHDPodcast.com) OR find us on Facebook, Instagram, LinkedIn or Twitter.

You can find Anna by looking for @AnnaJaworski and Joe by looking for Joe Flowers or jrf616 on Twitter and Instagram.

Many thanks to Myles Schweitzer -- the Wild Mooseman Band for our music. We love you, Myles!

Also, thanks to app.logo.com and Lauren England for helping us with our logo and our banner.

Hosted on Acast. See acast.com/privacy for more information.