New Year, New Narratives

Stroke Awareness: Awareness Today, Stronger Tomorrow

(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 [https://www.spreaker.com/podcast/the-chc-podcast-congenital-heart-chronicles--5779157/support?utm_source=rss&utm_medium=rss&utm_campaign=rss].

Easing Anxiety Before the Operating Room

(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 [https://www.spreaker.com/podcast/the-chc-podcast-congenital-heart-chronicles--5779157/support?utm_source=rss&utm_medium=rss&utm_campaign=rss].

Tested Love Documentary On Faith And CHD Trauma

(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/47Kf7q0 [https://bit.ly/47Kf7q0] Here's Hope Project Facebook Page: https://www.facebook.com/hereshopeproject [https://www.facebook.com/hereshopeproject] Become a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-congenital-heart-chronicles--5779157/support [https://www.spreaker.com/podcast/the-chc-podcast-congenital-heart-chronicles--5779157/support?utm_source=rss&utm_medium=rss&utm_campaign=rss].

New Year, New Narratives

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 [https://www.spreaker.com/podcast/the-chc-podcast-congenital-heart-chronicles--5779157/support?utm_source=rss&utm_medium=rss&utm_campaign=rss].

Caring Through Complexity: End-of-Life Care

(00:00:00) Introduction and Episode Overview (00:00:17) Meet the Hosts and Co-Producer (00:01:04) Introducing Today's Guests (00:03:34) Misconceptions About Hospice Care (00:06:14) Psychological Perspectives on Hospice (00:09:32) Palliative Care for Children (00:17:59) Communicating with Children About Death (00:22:19) Balancing Emotional, Spiritual, and Physical Needs (00:24:30) Changing Society's Approach to Death (00:31:46) Navigating Uncertainty with Congenital Heart Defects (00:35:05) Small Acts of Kindness (00:35:49) Learning from Life's Experiences (00:36:04) Hope and Quality of Life (00:36:34) Acknowledging Life's Realities (00:37:26) Panelists' Closing Remarks (00:38:09) Heartwarming Stories and Resources (00:39:01) End of Life Care Discussion (00:39:50) Importance of Acceptance and Preparation (00:40:59) Personal Experiences with End of Life (00:44:34) Role of Medical Professionals (00:53:08) Children and End of Life Conversations (00:58:37) Final Thoughts and Takeaways (01:03:10) Upcoming Changes and Farewell In this heartfelt episode of The CHC Podcast: Congenital Heart Conversations, hosts Anna Jaworski and Annie Ulchak, both deeply connected to the congenital heart defect community, delve into the sensitive topic of end-of-life care. Joined by expert panelists, including pre-planning specialist Rosa Hernandez, mental health professional Dr. Michael Groat, and palliative care nurse Maureen Groden, they explore misconceptions about hospice care, the psychological and emotional aspects of end-of-life discussions, and the importance of normalizing conversations about death. Personal stories, practical advice, and a focus on honest communication provide listeners with valuable insights into navigating these challenging times. 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. Become a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-congenital-heart-chronicles--5779157/support [https://www.spreaker.com/podcast/the-chc-podcast-congenital-heart-chronicles--5779157/support?utm_source=rss&utm_medium=rss&utm_campaign=rss].