The 1% Heart

About The 1% Heart

Welcome to The One Percent Heart Podcast, inspired by the 1% of people born with a congenital heart defect (CHD) and the journey they navigate at every stage of life. Through heartfelt stories and expert interviews, we highlight the experiences of children and adults living with CHD, while exploring the medical breakthroughs shaping their future. Why does this matter? CHDs are often overlooked, yet they affect millions. We’re here to change that — raising awareness, offering support, and building a more connected community for patients, families, and healthcare providers.

Publisher

One Percent Heart

Category

health & fitness

Language

en

Explicit

Yes

First episode

1 Oct 2024

Latest episode

16 Sept 2026

Latest episodes

23 episodes in the feed.

1. 

   16 Sept 2026

   Mechanical Heart Valve vs. the Grand Canyon | Bob Smith Returns!

   Three weeks after a helicopter lifted him out of the Grand Canyon, Bob Smith went climbing. Bob is back on The One Percent Heart. Last time he told us about El Capitan. This time he is halfway down a fourteen day run on the Colorado when a rapid called Horn throws him out of the boat and drives him into a rock wall. He is on warfarin for a mechanical aortic valve, which makes bleeding much harder to stop. The "just a bruise" joke in this episode is doing a lot of work. It was a hematoma that nearly doubled the size of his glute, and it ended his trip on a National Park Service helicopter. There is an ER doctor who cannot work out why a man on blood thinners would be on that river at all. There is a week alone in a Flagstaff hotel while his friends finish without him. And there is Joe, in California, who found Bob's Instagram before his own heart surgery and wanted to hear it from someone who had already been through it. That last part is a lot of what adult CHD looks like now. Patients calling patients, because nobody wrote the manual. The accident is part of the story. The life he intends to keep living is the rest of it. 📺 CHAPTERS 00:00 Cold open and introduction 00:54 Who Bob is, and what's in his chest 03:02 What sport climbing actually is 05:26 What a fall feels like on blood thinners 08:22 Nosferatus: the cave route in Mexico that made his legs bleed 14:30 The candy store mentality 17:00 Drezden ruptures a tricep 18:52 Fourteen days on the Colorado River 21:02 Horn Rapid 22:52 Thrown from the boat 26:42 "I'm not really sure if I can move" 30:16 One light beer at 115 degrees 32:08 A glute that doubled in size 35:14 Calling for a helicopter 37:23 Warfarin, INR, and bleeding into the muscle 39:14 Twenty five minutes to evac 41:59 The helmet debate 44:58 What an impact would mean for the valve 47:00 Turning down the painkiller 50:59 CT scan and two bags of plasma 55:44 A week alone in Flagstaff 56:46 Back on the wall three weeks later 58:22 The ER doctor who didn't get it 1:01:09 Joe, and the calls before surgery 1:05:34 Why he hates bucket lists 1:07:42 Where to find Bob ▶️ WATCH BOB'S FIRST EPISODE Rock climbing El Capitan with a mechanical valve: https://youtube.com/watch?v=zBLi5I8fq0c (https://youtube.com/watch?v=zBLi5I8fq0c) 🔗 FIND BOB Instagram: https://www.instagram.com/aortic_adventure/ (https://www.instagram.com/aortic_adventure/) Blog: https://myaorticadventure.blogspot.com/ (https://myaorticadventure.blogspot.com/) 🚨 CONTENT ADVISORY This episode discusses medical trauma, serious injury, internal bleeding, and emergency evacuation. ❤️ CONNECT WITH US Website: https://onepercentheart.com (https://onepercentheart.com) Instagram: https://www.instagram.com/thechdpodcast/ (https://www.instagram.com/thechdpodcast/) Email: support@onepercentheart.com (mailto:support@onepercentheart.com) ⚠️ DISCLAIMER Nothing in this episode constitutes medical advice. These are personal experiences and stories. Listener discretion is advised.

2. 

   28 Jul 2026

   Patients in the Room | cardiacneuro.org | The One Percent Heart Podcast

   A teenager came through a full cardiac workup and the cardiologist saw nothing wrong. Everyone else in the room saw a kid who was depressed. 🗓️ THE CONFERENCE THEY WANT YOU AT CNOC's 14th Annual Scientific Sessions run September 16 to 18, 2026 at the Chase Center on the Riverfront in Wilmington, Delaware, hosted by Nemours Children's Hospital. Virtual attendance is free for patients and families, and in-person is just $50. Register under the "People with CHD and Family Member" category. Drezden is presenting "Neuro What? Living Inside the Outcomes" on Friday, September 18. Have something these researchers should hear? Send it to support@onepercentheart.com (mailto:support@onepercentheart.com) or @theCHDpodcast and it goes into the talk. 📺 CHAPTERS 00:00 The Part of CHD Nobody Prepped You For 01:37 Andrea: Twelve Years in the PICU, Then a Pivot 02:15 Tom: A Heart Doctor Who Ended Up Studying Brains 04:17 The Huddle That Changed Everything 06:39 What a Neurodevelopmental Coordinator Actually Does All Day 13:54 So What Is CNOC, Exactly? 21:22 Collaboration Instead of Rankings 24:48 Past Keeping Kids Alive, Now What? 26:15 The 13-Year-Old Who Should Have Been Seen at Nine Months 27:11 Fixed Heart, Unfixed Everything Else 27:45 Ten Cardiologists and a Diagnosis I Didn't Know I Had 31:44 Why Adult Patients Belong in the Room 33:28 Why Parents Don't Hear What Doctors Tell Them 38:48 Heart and Brain, Explained Without the Jargon 41:47 Parent Mental Health Is Part of the Care Plan 46:53 Delaware in September, and a Free Virtual Seat 48:15 What CHD Means to Them Now 52:11 Get Your Story Into the Room 👤 ABOUT THIS EPISODE Dr. Tom Miller is a pediatric cardiologist and division director at MaineHealth who built the University of Utah's Heart Center Neurodevelopmental Program from the ground up. Andrea Smith, RN, BSN, spent over a decade as a pediatric ICU nurse before taking over that same program as its coordinator. Together they co-chair CNOC's Programs and Meetings Committee. Cardiac neurodevelopment is a young field — the first scientific statement came out in 2012 — born because the math changed: for decades the job was keeping infants alive, and now those kids reach adulthood with open questions about school, focus, sleep, anxiety, and executive function. Then it gets personal: Drezden went through roughly ten cardiologists before finding adult congenital care in his twenties, never connecting the ADHD, the sleep, or the traumatic stress to his heart. If you were ever told your heart was fixed and quietly wondered why everything else felt harder than it should, this conversation gives that a name. ⭐ SESSIONS PICKED FOR PATIENTS AND FAMILIES Picked by CNOC's patient and family advisers — no scientific background needed. Your lived experience is the qualification. Wed, Sept 16 8:00 AM | Advocacy in Action Workshop — the best place for patients and families to show up 1:30 PM | Laying the Foundation: communication, bonding, and family mental health 3:22 PM | Rapid Debate on ADHD treatment in CHD Thu, Sept 17 9:07 AM | Connecting Communities: community-led research in adult CHD mental health 2:15 PM | Breakouts: CN3 Think Tank, Research, and Clinical Value 4:30 PM | Free evening event at the Nemours Estate Fri, Sept 18 8:30 AM | Federal Bridges with Senator Chris Coons, and Advocacy in Action with Scott Leezer of Every 100th Heart 10:30 AM | The Educational Span: school, homebound, and hospital schooling 3:20 PM | Neuro-Optimization in Older Cardiac Patients, featuring Drezden's talk Kids are welcome; parents can come and go as needed. 🔗 RESOURCES CNOC: https://cardiacneuro.org (https://cardiacneuro.org) Registration: https://www2.cardiacneuro.org/forms/registration/2026ann_register.iphtml (https://www2.cardiacneuro.org/forms/registration/2026ann_register.iphtml) Adult Congenital Heart Association: https://www.achaheart.org (https://www.achaheart.org) ❤️ CONNECT Website: https://onepercentheart.com (https://onepercentheart.com) Instagram: @theCHDpodcast Email: support@onepercentheart.com (mailto:support@onepercentheart.com) Nothing in this episode constitutes medical advice. These are personal experiences and stories.

3. 

   2 Apr 2026

   More Than Survival | Rick Puder & Brook Dorris, Mentors & Advocates | The One Percent Heart Podcast

   What happens after you survive something? Rick Puder's answer was to walk the next person through it. Brook Dorris's answer was to change the system. Both do it through the Adult Congenital Heart Association — and both programs are recruiting right now.📺 CHAPTERS00:00 Cold Open: "She'd put her hand on my chest"00:23 Introduction00:59 Brook's Story: 15 Surgeries, Small Town Kentucky01:53 Rick's Story: Heart Failure at 10 Days Old03:55 Two Paths After Survival04:30 Heart to Heart Peer Support Program06:09 Brook's Road to Advocacy07:36 Standing in Front of Congress09:50 Putting a Face to the Condition12:04 What Is the PFAB?14:23 Who the Peer Mentors Serve16:08 Why Peer Support Improves Outcomes18:14 The Power of Meeting Someone Like You20:10 Community Beyond CHD23:28 Insurance, Teaching, and the "What's Next"26:26 Medical Trauma and CPTSD28:55 White Coat Syndrome30:10 Who Should Be a Peer Mentor?33:50 The Give-a-Shit Factor35:47 Who Should Join the PFAB?36:56 Why You Should Get a Mentor Before You Need One37:53 "You Get a Mentor for a New Job — Why Not for Open Heart Surgery?"39:52 What the Peer Mentor Program Means to Rick40:46 What the PFAB Means to Brook43:07 Closing: You Don't Have to Sit in This Question Alone👤 ABOUT THIS EPISODERick Puder has been a peer mentor with ACHA's Heart to Heart program for 15 of its 16 years. He had heart failure at 10 days old, first surgery at four, and didn't meet another CHD patient until his 40s. Now he mentors other mentors as a Senior Ambassador — and some of his best mentors started as mentees.Brook Dorris has had 15 heart procedures including the Fontan and bi-directional Glenn. She's a high school special education teacher in Kentucky and a member of ACHA's Patient & Family Advisory Board. She went from being terrified of public speaking to advocating on Capitol Hill.Both programs open applications Thursday April 2nd through May 8, 2029.🔗 RESOURCES & LINKS- ACHA Heart to Heart Peer Support Program: https://www.achaheart.org/your-heart/programs/heart-to-heart/- ACHA Patient & Family Advisory Board: https://www.achaheart.org/get-involved/- Rick's first episode (and more about peer mentors) — "Not Alone Anymore": https://youtu.be/PNQPw81ZrbE❤️ CONNECT WITH USWebsite: https://onepercentheart.comInstagram: @theCHDpodcastEmail: support@onepercentheart.com⚠️ DISCLAIMERNothing in this episode constitutes medical advice. These are personal experiences and stories. Listener discretion is advised.🏷️ KEYWORDScongenital heart defect, peer mentor, ACHA, peer support, patient advocacy, PFAB, Heart to Heart, adult CHD, Fontan, coarctation of the aorta, medical trauma, CPTSD, white coat syndrome, CHD community#CHD #CongenitalHeartDefect #HeartWarrior #CHDAwareness #HeartHealth #PeerSupport #ACHA #PatientAdvocacy

Reach and audience

Public platform figures. Ratings count people who left a rating, not total listeners.

Apple Podcasts (US)

5.0 / 5

2 ratings

Spotify

5.0 / 5

4 ratings