『The One Percent Heart』のカバーアート

The One Percent Heart

The One Percent Heart

著者: One Percent Heart
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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.One Percent Heart 衛生・健康的な生活
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  • Mechanical Heart Valve vs. the Grand Canyon | Bob Smith Returns!
    2026/09/16

    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

    🔗 FIND BOB
    Instagram: https://www.instagram.com/aortic_adventure/
    Blog: 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
    Instagram: https://www.instagram.com/thechdpodcast/
    Email: support@onepercentheart.com

    ⚠️ DISCLAIMER
    Nothing in this episode constitutes medical advice. These are personal experiences and stories. Listener discretion is advised.

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    1 時間 10 分
  • Patients in the Room | cardiacneuro.org | The One Percent Heart Podcast
    2026/07/28

    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 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
    Registration: https://www2.cardiacneuro.org/forms/registration/2026ann_register.iphtml
    Adult Congenital Heart Association: https://www.achaheart.org

    ❤️ CONNECT
    Website: https://onepercentheart.com
    Instagram: @theCHDpodcast
    Email: support@onepercentheart.com

    Nothing in this episode constitutes medical advice. These are personal experiences and stories.

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    53 分
  • More Than Survival | Rick Puder & Brook Dorris, Mentors & Advocates | The One Percent Heart Podcast
    2026/04/02

    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

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    45 分
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