The CHC Podcast: Congenital Heart Chronicles

(00:00:00) Listener Advisory (00:01:40) Meet The Hosts And Guests (00:04:00) Menopause Is Not Only For Women (00:05:51) Heart Risks And Symptom Mix Ups (00:12:54) Treatment Options And Hormone Therapy (00:16:43) Making Clinics Safer For Everyone (00:19:07) HUG Message (00:20:04) Audience Question On Estrogen For Trans Women (00:25:04) How Do You Know It Started (00:36:44) Producer Reflections and Inclusive Language Takeaways (00:47:54) Safety Reminders, Key Advice, And Closing Hot flashes that feel like a cardiac emergency. Palpitations that spark old fears. Mood swings and insomnia that get dismissed as “stress” or “you’re too young.” When you live with congenital heart disease or an acquired heart condition, perimenopause and menopause can hit differently, and the uncertainty can be exhausting. We sit down with longtime CHD clinician Disty Pearson and CHC volunteer Ayrton Beatty to make the hormonal transition clearer, safer, and a lot less isolating.We dig into the real overlap between menopause symptoms and heart symptoms, including night sweats that can be mistaken for infection, hormone-driven palpitations, rising blood pressure, cholesterol shifts, metabolic syndrome, sleep apnea risk, and the body composition changes many of us notice even when we are “doing everything right.” We also get practical about what helps: strength training and aerobic exercise, stress reduction, CBT for mood and sleep, nutrition strategies, and how to think about menopausal hormone therapy and local estrogen options when you have a complex cardiac history or long QT concerns.Just as important, we challenge the idea that menopause is only a women’s health topic. Non-binary and transgender people need accurate information and respectful care too, and we talk about inclusive language, clinic systems that normalize pronouns and names, and how to stop assumptions from blocking good medicine. If you have ever felt brushed off because of your age, anatomy, or identity, this conversation is for you.Subscribe for more congenital heart conversations, share this with someone navigating hormone changes and heart health, and leave a review with the symptom or question you want us to tackle next.Become a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-congenital-heart-chronicles--5779157/support.

(00:00:00) Healthy Until Suddenly Not (00:00:16) Welcome And The Emotional Aftermath (00:01:01) Remembering Belen Blanton (00:01:54) Three Diagnoses That Rewrite History (00:04:34) Heidi’s Murmur And Fast Surgery (00:06:55) Jeff’s Heart Attack With No Blockage (00:09:40) Jackie’s Loss And The Long QT Truth (00:13:59) Heidi’s Recovery Fears And New Normal (00:19:02) Jeff’s Push For A Real Solution (00:22:23) When Long QT Gets Dismissed (00:27:06) Fear Before The Operating Room (00:31:26) Living Inside Uncertainty And PTSD (00:36:25) Testing That Protects The Next Generation (00:37:58) Family Support During College Recovery (00:41:15) Finding Community And Survivor Guilt (00:45:57) Finding Community And Survivor Guilt (00:47:48) Closing Thoughts And How To Reach Us (00:50:44) Anna And Annie Reflect On the Episode (00:55:16) Advocacy, Second Opinions, And Next Steps (00:59:17) Stay Connected Beyond The Episode Your body can be giving you signals for years, and then one test changes everything. We’re talking about the emotional and mental health impact of receiving a heart diagnosis later in life, or learning that the condition you thought you had was never the full story. We also take a moment to honor Belen Blanton, a beloved advocate and friend of our heart community, whose legacy of service and openness continues to shape these conversations.We hear three very different paths to answers. Heidi Scoggins goes from a routine appointment to a life-altering discovery: a heart murmur leads to a diagnosis of PAPVR and an atrial septal defect, and suddenly, open-heart surgery is on the calendar. Jeff Holden, an avid cyclist, lives through heart attack symptoms, a myocardial infarction, and the confusion of “no blockage” before finally learning he has a symptomatic myocardial bridge. Jackie Renfrow shares a heartbreaking family story where seizures and sudden deaths were long believed to be epilepsy until an ECG revealed Long QT syndrome, unlocking both grief and a way to protect the next generation.Along the way, we talk honestly about fear before surgery, medical trauma, survivor’s guilt, the frustration of being dismissed, and the practical power of advocacy. If you’ve ever felt like you “shouldn’t” be sick, or you’ve struggled to get a clinician to connect the dots, you’re not alone. Listen, share this with someone who needs it, and please subscribe and leave a review so more families can find these stories when they’re searching for answers.Jeff's Podcast, Imperfect Heart: https://www.myimperfectheart.com/Jeff's book: https://www.amazon.com/Imperfect-Heart-Stories-Myocardial-Bridges-ebook/dp/B0DZ6Z4Y2J/ref=tmm_kin_swatch_0Become a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-congenital-heart-chronicles--5779157/support.

(00:00:00) Strength in Vulnerability: CHD Patients Turn Caregivers (00:00:05) Intro & Guest Introductions (00:03:11) Donna: From Patient to Parent-Caregiver (00:05:04) Dillon: Fatherhood & Jackson's Diagnosis (00:06:03) Karen: Caring for Two with Parkinson's (00:07:35) Balancing Own Health with Caregiving (00:11:53) Karen's Medical Advocacy: The Decision Tree (00:14:53) Does Patient Experience Help or Hurt as Caregiver? (00:20:15) What Healthcare Teams Should Understand (00:24:41) Advice for CHD Adults Becoming Caregivers (00:31:42) Audience Q&A: Having Children with CHD (00:37:16) UK Healthcare Challenges & Annie's Caregiver Journey (00:40:06) Generational Progress in Cardiac Care (00:42:31) Frank Jaworski: A Healthcare Professional's Perspective (00:45:00) Co-Producer Reflections (00:54:44) Biggest Takeaways & Closing The day you realise you’re booking more appointments for someone you love than for your own heart can feel like crossing an invisible line. We sit with that role reversal and get specific about what it looks like when adults with congenital heart disease become caregivers while still managing lifelong cardiac care, including adult congenital heart disease follow-up, medications, fatigue, and the mental load that never really shuts off.We’re joined by Donna Giles, who lives with a complex single ventricle and Fontan circulation while advocating for her two adult children with cerebral palsy, and she shares the slow shift from “parent” to “carer,” plus the hard work of letting a care team step in. Dillon Wheatley, a CHD survivor and father, walks us through the heartbreak of a prenatal diagnosis, the terror of newborn open heart surgery, and how hands-on hospital education made home care possible. Karen Krymski reflects on years of caregiving for loved ones with Parkinson’s disease, the discipline of medication management and speaking up, and what happens when grief and stress collide with congestive heart failure risk.Across their stories, we keep coming back to caregiver burnout, advocacy, emotional intelligence in healthcare, and the single best piece of advice: don’t try to walk this road alone. If you’ve ever been the patient and the caregiver, you’ll hear your own thoughts out loud, and you’ll leave with practical language for asking for support. Subscribe, share this with someone who’s carrying a lot, and leave a review so more CHD families can find these conversations.Here is the link to Dillon Wheatley's bookHere’s Donna’s Substack--Life and Other StoriesBecome a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-congenital-heart-chronicles--5779157/support.

(00:00:00) Naming the Unspoken (00:00:26) Welcome and Topic Setup (00:01:21) Meet the Panel (00:04:07) Corinne on Life Decades (00:06:55) Insurance and Anxiety Relief (00:09:18) Jen Finds Her Voice (00:12:25) Kerri on Safety and Trauma (00:15:54) Perimenopause and Aging (00:23:25) Fertility and Future Planning (00:24:25) Grief and Adapted Life (00:27:06) Coping Tools and Walking (00:31:25) Gaps in Emotional Prep (00:39:42) Holistic Joy and Triggers (00:40:34) Trauma Body Holds Joy (00:41:42) Panel Thanks and Break (00:43:19) Audience Q&A Begins (00:44:04) Pioneer Pressure and Labels (00:48:10) No Break From CHD (00:49:50) Mental Health Coverage Gaps (00:51:02) Patient Provider Dual Role (00:54:23) Tools to Recenter (00:56:13) Sponsor Disclaimer and Books (00:57:02) Co-Producers React (00:59:23) Surprises Early Menopause (01:02:52) Advocacy and Therapy Access (01:07:12) Building Standardized Support (01:11:13) Closing Thanks and Ways Connect On the CHC Podcast, host Anna Jaworski and co-host Annie Ulchak discuss overlooked emotional transitions in congenital heart disease (CHD), beyond the shift from pediatric to adult cardiology. Guests Dr. Corinne Smorra, Jennifer Angelone, and Kerri Pastot share how lived experience shapes their mental health work, addressing social challenges, advocacy, medical trauma, and the need for coping tools.The episode explores insurance flexibility into adulthood, the pressure of being labeled “resilient,” and new realities like perimenopause and aging with CHD, including concerns about limited research and medications. Panelists highlight gaps in standardized, lifespan emotional support and emphasize holistic care, integrated services, and learning to self-regulate through therapy, community, and practical strategies. Producers and audience members add perspectives on late diagnosis, grief, triggers, and access barriers to counseling.You can find our guests on Instagram:Jennifer Angelone: @jenniferangelonelmhcKerri Pastot: @kerrilynnx3Corinne Smorra: @heartandmindcounselingBecome a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-congenital-heart-chronicles--5779157/support.

(00:00:00) Welcome And Why Heart Camps Matter (00:02:50) Beat Retreat Begins For Adults (00:03:52) Camp Life Plus Anonymous Q&A (00:05:53) Camp Meridian For Kids And Teens (00:09:15) Accessibility And Self Advocacy Skills (00:12:56) Building Trust With Medical Volunteers (00:14:09) Funding And Staffing Reality Checks (00:17:27) A Transplant Hike Success Story (00:21:44) Mental Health And Feeling Less Alone (00:26:25) Audience Q&A On Dates And Volunteering (00:31:09) Family Weekends And Sibling Support (00:33:46) Go Anyway If You Are Nervous (00:36:00) Private Questions And Aging With CHD (00:38:00) Producer Roundtable Reflections (00:42:54) Why Adult CHD Camps Need Donors (00:47:30) Final Takeaways And Farewell Heart camp sounds simple until you hear what it gives back: a place where scars are normal, bathroom breaks on diuretics are understood, and nobody has to explain the basics of living with a congenital heart defect. We sit down with two powerful voices in the CHD community to talk about how camps create belonging and confidence for kids, teens, and adults who often grow up feeling like they are the only one.Shelagh Ross, a lifelong CHD patient and global advocate, walks us through Beat Retreat Camp in Ontario, Canada, a rare adult congenital heart disease camp that mixes classic camp fun with real-world support. We get into the activities, the unexpected friendships, and the anonymous Q&A with cardiac professionals where people can ask “private” questions without embarrassment. Shelagh also explains the behind-the-scenes challenges: funding, insurance, travel across a huge province, and the effort it takes to staff a medically safe weekend for adults who may be managing repeat surgeries, devices, or heart failure.Margaret Raymond, a CHD patient and longtime Camp Meridian volunteer, shares how this New Hampshire heart camp serves ages 8 to 17 with youth, teen, and navigator programs built around adventure, self-advocacy, and mental health. We talk accessibility, meeting campers where they are, and why learning to be comfortable with the uncomfortable can change a young person’s entire relationship with anxiety and independence.If this conversation sparks something in you, share it with a CHD family, consider supporting a heart camp, and subscribe so you do not miss what comes next. If you found value here, please leave a review and tell us what kind of heart camp story you want to hear.Links mentioned in the episode:Camp Meridian: https://www.campmeridian.org/Canadian Congenital Heart Alliance: https://cchaforlife.org/Facebook Page for The Beat Retreat: https://www.facebook.com/groups/thebeatretreatcamp/Hearts Unite the Globe's Camp page: https://www.heartsunitetheglobe.com/campsCamp Joy: https://www.cincinnatichildrens.org/institute/heart/clinical/patient-resources/family-campBecome a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-congenital-heart-chronicles--5779157/support.

(00:00:00) Welcome And Meet The Panel (00:03:12) The First Appointment Shock (00:06:39) Dismissed Symptoms And Second Opinions (00:08:16) Fight Or Flight And Family Pressure (00:12:01) How To Prepare For The Visit (00:15:47) Listener Stories And Finding Agency (00:18:08) Partners As Advocates And Witnesses (00:21:14) Navigating The New Normal Daily (00:23:16) Valve Choices Insurance And Tradeoffs (00:25:57) Relationship Strain Divorce And Support (00:30:06) Producers Debrief What Stood Out (00:42:40) Takeaways, Advocacy, And Closing One cardiology appointment can redraw your whole life in minutes. We sit with that moment right after the shock, when you’re trying to listen, breathe, and make decisions about a heart you barely understand yet, and we talk honestly about what helps you move from diagnosis to direction.Our panel brings three angles that rarely get held together in one conversation: Aryton shares the relief and fear of finally being diagnosed with drug-induced Long Q-T Syndrome after not being taken seriously, Monique talks about hearing a congenital heart disease diagnosis while eight months pregnant and then parenting through surgeries and siblings’ questions, and Peyton describes the whiplash of getting new answers as an adult CHD patient and facing another open-heart surgery. Along the way, we dig into real-world details that shape outcomes, from taking notes when you dissociate, to getting a second opinion, to not spiraling on “Dr. Google” or misreading portal results.We also go beyond the exam room into what living with CHD actually demands: how partners and friends become your extra set of ears, how insurance and referrals can slow care, how relationships can strain or break, and how advocacy can look as simple as asking, “Can we wait until after summer?” If you or someone you love is facing a first cardiology visit for congenital heart defects, this conversation offers practical tools, emotional validation, and a reminder that support changes everything.Subscribe for more congenital heart conversations, share this with someone who needs it, and leave a review so more CHD families and patients can find these stories.Become a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-congenital-heart-chronicles--5779157/support.

(00:00:00) Introductions And Stroke Risk In CHD (00:03:40) What The First Symptoms Felt Like (00:10:09) Stroke Watch Meds And Follow Up (00:12:21) The Surprising Aftereffects Of Stroke (00:17:27) Listen To Your Body And Advocate (00:24:27) Audience Q&A Real World Stories (00:30:40) Talking About Risk Without Fear (00:36:24) Sensory Overload Memory And Identity (00:46:36) Retraining Movement And Living With Limits (00:57:14) Why So Many Drove Themselves (01:00:09) Keeping Agency In Emergency Care (01:07:58) Takeaways And Next Month Preview A stroke can feel like a sudden plot twist, especially when you have spent your whole life adapting to congenital heart disease. We sit down with CHD adults who have lived through stroke and TIA scares, and they describe the moment symptoms crossed from “that’s weird” to “something is seriously wrong” and what they wish they had known sooner about stroke risk with congenital heart defects.Jared Berninger (tricuspid atresia, Fontan) shares how his stroke showed up in everyday tasks and how community support changed over time. Shauna Simpson (transposition of the great arteries, Mustard procedure, pacemaker and stents) talks about a frightening TIA-like event, the confusion when clinicians disagree, and the follow-up that included anticoagulation. Rebecca Davis (complex d-TGA, VSD, ASD, double outlet right ventricle, staged Fontan) walks us through multiple strokes, being dismissed at first, and the reality of advocating for yourself when a local hospital does not understand adult congenital heart disease.We also dig into what recovery actually looks like: sensory overload, word-finding delays, memory issues, balance problems, fatigue, and the anxiety that makes every tingle feel like a relapse. The conversation turns to agency in emergency care, why so many CHD patients try to keep control by driving themselves to the ER, and how to build a safer plan that still respects autonomy. If you are living with Fontan circulation, complex CHD, arrhythmias, or anticoagulation, you will hear language you can use, questions to ask, and reminders that stroke is scary but not the end of your story.Subscribe for more adult congenital heart disease conversations, share this with someone who needs it, and leave a review so more CHD families can find these stories. What warning sign would you never ignore after hearing these experiences?Become a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-congenital-heart-chronicles--5779157/support.

(00:00:00) A Lifelong Patient’s Reality (00:01:16) What Triggers Pre-Op Anxiety (00:04:10) Frank’s OR Calm And Clear Words (00:09:05) Hypnotic Rapport And Familiar Voices (00:14:45) Music Therapy Tools That Work (00:24:25) Therapy Dogs And Instant Relief (00:31:05) Regulation Biology Oxytocin And Stress (00:38:35) Breathing Cues Control And Consent (00:45:00) Listener Stories Trauma And Agency (00:54:45) Producer Takeaways Everyday Calm Skills (00:57:05) Resources Next Topic And Community The moments before anesthesia can feel like your body is betraying you: racing heart, shaky hands, spiralling thoughts, and that terrible sense that you’ve lost control. We want to change what those minutes feel like. Anna Jaworski and Nicholle Bilodeau sit down with a panel that understands both the science and the lived reality of medical fear, especially for people who face repeat procedures through congenital heart disease and other chronic conditions.Frank Jaworski, a nurse anesthetist with hypnotherapy training and the parent of a CHD patient, explains how calm starts with communication. He talks about choosing the right level of detail, avoiding frightening language, and using voice, eye contact, and orientation, so waking up is less disorienting.Kathleen Brown, a board-certified music therapist, breaks down what music therapy actually does neurologically and emotionally, from regulating breathing tempo to engaging memory and attention in ways that reduce anxiety.Dr .Kate Lund, a clinical psychologist, shares how therapy dog visits with Wally at Seattle Children’s Hospital can activate the parasympathetic nervous system, spark connection, and bring real relief to patients, families, and even hospital staff.We also open the floor to listener stories about medical trauma, PTSD, and the power of agency, whether that looks like singing along to music during a procedure or asking a clinician to change positioning so you can see what’s happening. If you’re searching for pre-op anxiety tips, coping skills before surgery, or compassionate tools for patients and caregivers, this conversation offers options you can actually use. Subscribe, share with someone facing a procedure, and leave a review with your go-to calming strategy.Become a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-congenital-heart-chronicles--5779157/support.

(00:00:00) Welcome! (00:02:06) A Heart Dad Chooses Hope (00:04:14) Demi's Miracle Through Music (00:08:23) Coping with Trauma Through Faith (00:11:48) Why Men's Mental Health Matters (00:15:11) CHD Resources and Listener Email (00:16:02) Community Questions on Resilience (00:18:58) Parenting From Across the Country (00:26:04) Gratitude Survivor Guilt Therapy (00:31:15) How to Support "Tested Love" (00:34:20) Panel Reactions from CHD Community (00:41:37) Siblings and the Hidden Grief (00:48:45) Connection as the Core Takeaway (00:53:59) Closing and Where to Find Us Three days to live is the kind of sentence that splits life into before and after. Heart dad Danny Espinoza takes us back to the fear of an in utero diagnosis, the pressure to give up, and the choice to keep going anyway. Fifteen years later, his daughter Demi is still here after tetralogy of Fallot, pulmonary atresia, MAPCAs, 13 open heart surgeries, ECMO, and a level of medical trauma that most families can barely imagine.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/47Kf7q0Here's Hope Project Facebook Page: https://www.facebook.com/hereshopeprojectBecome a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-congenital-heart-chronicles--5779157/support.

In the first episode of Season 4, Anna Jaworski announces that The CHC Podcast: Congenital Heart Conversations has been reintroduced as Congenital Heart Chronicles after listener voting. This reflects the show’s focus on lived-experience stories and improved discoverability. Anna is joined on video by core volunteers Annie Ulchak (hypoplastic left heart syndrome Fontan patient), Ayrton Beatty (bereaved sibling with drug-induced long QT syndrome), and Nicholle Bilodeau (bicuspid aortic valve diagnosed at 44 with surgery a week later) to discuss the rebrand’s goals, risks, and minimal changes to content and format. They preview 2026 episodes on menopause, gratitude, CHD documentary “Tested Love,” dog therapy, music therapy, hypnotherapy, stroke awareness, emotional transitions, caregiving, World Heart Day, and nonprofits, and share ways to volunteer, sponsor, or join the Hearts Unite the Globe community.Become a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-congenital-heart-chronicles--5779157/support.