Heart to Heart with Anna

• ECMO To Ironman: Elmar Sprink's Story about Life After Heart Transplant

  Send us a textWhat does it take to learn to sit again, then stand, then chase the horizon at the Ironman World Championship? We sit down with endurance athlete and keynote speaker Elmar Sprink to trace the steps from sudden cardiac arrest and seven months on ECMO to a disciplined, data‑driven comeback fueled by routine, empathy, and stubborn hope. Elmar opens up about the invisible work of recovery—why he treated hospital life like a training plan, how a visitor spreadsheet kept his spirits up, and the role therapy and humor played when the outcome was uncertain.We unpack the nuts and bolts of training after a heart transplant: threshold testing to set safe zones, the difference denervated hearts can make to heart rate response, and why indoor cycling and carefully staged swim returns protect against infection while rebuilding fitness. Elmar explains how steady training lowered his blood pressure and reduced medications, and he shares the small, daily wins—like a perfect cappuccino—that kept his motivation alive. Along the way, he reflects on gratitude for his unknown donor and the ritual of honoring that gift at every finish line.Anna also spotlights creative sparks and community momentum: new children’s stories in the Living with CHD series that portray everyday family life with honesty, plus highlights from the SV-ONE conference where scientists, clinicians, and advocates collaborate for single ventricle care. We share upcoming inclusion goals, from an ASL episode to a new German episode featuring Elmar, and we talk candidly about organ donation advocacy—what messaging moves people, and how real stories can shift culture and save lives.If you’re navigating CHD, recovery, or any long road back, this conversation offers a clear playbook: start small, be consistent, protect your body, lean on your people, and celebrate the quiet victories. Subscribe, share this episode with someone who needs a lift, and leave a review with your biggest takeaway—we’d love to hear what small win you’re chasing this week.Support the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

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• From Antidepressants To Arrhythmias: A Candid Guide To Drug‑Induced Long QT

  Send us a textWe share community updates and new events, then sit down with Ayrton Beatty to unpack how an antidepressant triggered Long QT syndrome, what symptoms to watch for, and the everyday tactics that keep them safe while honoring Edward’s memory. The conversation blends hard science, lived experience, and practical steps anyone can use to advocate with confidence.• Red Hat Society join and conference highlights• Down syndrome and CHD awareness link• Upcoming Zoom listening session details• Live recording on transition and life stages• Ayrton’s diagnosis of drug‑induced Long QT• Warning signs during exercise and daily walks• Role of wearables in spotting heart‑rate thresholds• Tapering off venlafaxine and mental health impact• Switching to citalopram and ongoing vigilance• Triggers to avoid including sudden noises and swimming• Practical safety tips including hydration and potassium• Advocacy advice and seeking second opinions• Remembering Edward and hidden electrical disordersJoin us on November 25th, 2025 at 4 p.m. Central Time for a Zoom listening event to hear Ellen Boyer’s episode "Shattering Stereotypes in the World of Down Syndrome and Congenital Heart Defects.” Here is the Zoom link:  https://tinyurl.com/HUGZoomRoomPatrons, meet us on October 30th at 4 p.m. Central Time for our live recording on "Transition and Life Changes." Here is the Zoom link: https://tinyurl.com/HUGZoomRoomSupport the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

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• CHD Connects Hearts: A Grandmother’s Mission to Unite Us All

  Send us a textWhat happens when a grandmother's love collides with a broken system? When Christy Pace's grandson Hunter was diagnosed with Hypoplastic Left Heart Syndrome before birth, she found herself thrust into an unexpected role – not just as a supportive grandmother, but eventually as a visionary determined to transform how the CHD community connects.Our conversation pulls back the curtain on the rarely discussed perspective of grandparents in the CHD journey. Christy's raw honesty about her emotional response – moving from shock to protection, anger to fear – reveals the complex ripple effects when a heart diagnosis enters a family. When COVID restrictions prevented her from being present for Hunter's birth or even meeting him until he faced a life-threatening cardiac arrest at two months old, Christy's determination only grew stronger.The isolation heart families experience emerged as a central theme in our discussion. As Christy watched her daughter retreat from social gatherings to protect Hunter between surgeries, she recognized a hard truth many relatives miss: this isolation isn't a choice but a survival strategy. "This isn't 'I don't want them to get a cold,'" Christy explains. "This is life and death." Her passionate plea for extended family to keep inviting, even when the answer is consistently "no," offers valuable perspective for anyone supporting heart families.But what makes this conversation truly special is how personal trauma transforms into purpose. After years of searching for resources to help her daughter and grandson, Christy grew frustrated with the scattered nature of CHD support. Rather than starting another foundation, she's created something revolutionary: CHD Connects Hearts, a distraction-free ecosystem bringing together patients, families, organizations, and researchers in one private community without the noise of advertising or algorithms.Whether you're a heart parent, grandparent, or supporter, this episode offers both emotional validation and practical hope. As Christy reveals her vision for united progress in the CHD world, you'll be inspired to consider how connection might be our most powerful medicine.Link to CHD Connects Hearts: https://chdconnectshearts.com/homeAnna's Blog: https://www.heartsunitetheglobe.com/hug-blog/moving-beyond-facebook-joining-forces-with-chd-connects-heartsSupport the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

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• Half a Heart, Whole Stories: Steven Hutchison, Jessica Cowin, and More

  Send us a textSteven Hutchison has defied expectations his entire life. Born with hypoplastic left heart syndrome (HLHS) nearly four decades ago, he is now a 38-year-old husband, father of three, and full-time worker who approaches each day with remarkable perspective and gratitude.Diagnosed at two weeks old, Steven underwent staged surgeries including the Glenn and Fontan procedures, and now lives with Fontan-associated liver disease, one of the long-term complications that requires careful monitoring. But his story is about more than medical milestones. Steven shares how living on the same street as his parents and brother has created a strong support system, how he explains his condition to his children with honesty and hope, and how his faith and outlook shape the way he moves through life.From two 12-hour ablations to participating in groundbreaking research with HeartWorks, Steven’s resilience continues to inspire. His message to parents of newly diagnosed HLHS babies is simple but powerful: there is so much more possibility today than when he was born.Steven’s story is a reminder that people born with congenital heart disease can build meaningful lives filled with purpose, family, and joy—not despite their condition, but alongside it.Links to events mentioned in this episode:Link to register for FON-ONE: https://web.cvent.com/event/80f0addb-25c0-4d87-9cb1-99931b9062db/summaryCNOC Scientific Session: https://cardiacneuro.org/scientific-sessions/HeartWorks: https://heartworksinc.org/Support the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

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• Voices of Strength: Tyler Šajdák's HLHS Journey and Advocacy in the CHD Community

  Send us a textTyler Šajdák wasn't supposed to grow up. Born with hypoplastic left heart syndrome in 1993, he was part of a generation receiving experimental surgeries with uncertain outcomes. Today, at 31, he works as an academic advisor, pursues a master's degree, and serves as a powerful advocate for the adult congenital heart defect community."I've been told by people that just by looking at me, they wouldn't know that I had a heart defect," Tyler shares during our conversation. This invisibility is both a blessing and a challenge for the growing population of adult CHD survivors who must navigate a healthcare system still learning how to treat them.Tyler's involvement with Single Ventricle One (SV1) - the recently unified organization combining pre-Fontan and post-Fontan networks - puts him at the forefront of efforts to improve care for adults with complex heart conditions. "I think my role is making sure the other planners are thinking of how the adults can be served as well," he explains, describing how medical conferences historically focused primarily on pediatric care.Our conversation delves into deeply personal territory as Tyler recounts his experience with vocal cord paralysis following surgery and the profound moment when his grandfather, after suffering a stroke, heard Tyler speak with a full voice for the first time shortly before passing away. We also discuss his recent transplant evaluation, where doctors delivered some surprising news.For anyone living with CHD or caring for someone with a heart defect, Tyler's story offers both practical guidance and emotional resonance. From balancing health concerns with career ambitions, to finding community with others who share similar experiences, he demonstrates how adults with congenital heart conditions can thrive while helping shape a medical field still discovering what lifelong care looks like for this first generation of survivors.Connect with the SV1 community through their upcoming patient day in Indianapolis this October - whether you're a patient seeking connection, a parent looking toward your child's future, or a medical professional committed to advancing care standards for this unique population.Helpful Links mentioned during this episode:Boston Children's Hospital Single Ventricle Family Day at the New England Aquarium: https://ow.ly/omax50WAN8AKristi Pena’s episode about Barth Syndrome: https://www.buzzsprout.com/62761/episodes/398916Link to register for SV-One Fall 2025: https://www.svone.org/events/fall-2025-learning-sessionLink to "The Heart of a Heart Warrior" book series on Baby Hearts Press. Tyler's essay is in Volume One: Survival: https://babyheartspress.myshopify.com/products/the-heart-of-a-heart-warrior-volume-1Support the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

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