Heart2Heart Talk with Mary Burrell

Mary Burrell
  • 5.0 (3)
  • Medicine
  • Updated Weekly

Heart2Heart Talk is a place for honest conversations about living with heart valve disease. Hosted by hospice survivor and patient Mary Burrell, we bridge the gap between clinical data and the human experience. Join patients, caregivers, and experts for raw conversations on symptoms, clinical trials, and the fears no one whispers out loud. From navigating doctors to finding your voice, we share the stories behind the diagnosis. Where we speak from the heart, for the heart.

  1. May 13

    The Hormone Storm

    Episode: #2 Guest: Ken Aster Topic: Carcinoid Heart Disease, Rare Disease Advocacy & Invisible Battle When a neuroendocrine tumor silently triggers a 'hormone storm,' your heart valves become the collateral damage. How do you lead a business when your body is fighting a war no one can see? In Episode 2, host Mary Burrell is joined by Ken Aster, Co-Founder of Prosum and a Southern California business leader. Ken’s journey is a masterclass in integrated leadership balancing a high-stakes career with the sudden reality of Carcinoid Heart Disease. After a neuroendocrine tumor (NET) began damaging his heart valves from the inside out, Ken underwent two transcatheter valve replacements. Today, he pulls talks about the "Invisible Illness" experience looking perfectly healthy to the outside world while navigating a life-threatening medical crisis. Strategic Insights from This Episode: The Internal Storm: A breakdown of how hormones cause heart valves to become thick and stiff, and why these symptoms are so often missed. The "Invisible" Burden: The emotional and physical weight of managing a rare diagnosis while maintaining professional and family responsibilities. The Advocacy Protocol: Mary and Ken discuss the specific clinical "hard stops"—including the 5-HIAA urine test and NT-proBNP blood test—that every patient needs to secure their own roadmap to care. Rarity is never an excuse for a missed diagnosis. Tune in to learn how to turn a "random Tuesday" struggle into a strategic fight for your life. Explore the Whole Picture: Connect with our Guest: Learn more about Ken’s professional work at ⁠Prosum⁠. Visit our Website: https://www.maryburrell.com/ Connect with Us: info@maryburrell.com Resources for Patients & Families: The Healing NET Foundation: Access the ⁠Medical Hub⁠ for guides on Carcinoid Heart Disease. NET Research Foundation (NETRF): Comprehensive ⁠Patient Guides⁠ and specialist databases. LACNETS: Expert ⁠Video Library⁠ on "invisible" symptoms. Tune in to shift the narrative from fragmented survival to strategic advocacy. Let’s build the bridge the system forgot. Championing the whole heart—yours, ours and theirs. #Heart2HeartTalk #CarcinoidHeartDisease #NETCancer #PatientAdvocacy #InvisibleIllness #HeartValveHealth #RareDisease #StructuralHeart

    17 min

  2. Apr 15

    The Ghost of Treatments Past

    Episode: #1 Guest: LESLIE MOORE Topic: Mantle Radiation & Hodgkin Lymphoma This episode explores the long-term heart effects of mantle radiation, Hodgkin lymphoma treatment, and radiation-related heart valve disease in cancer survivors. For many cancer survivors, ringing the bell at the end of treatment feels like the finish line. But for some people, the story doesn’t end there. In this opening episode of Season 4 of Heart2Heart Talk, host Mary Burrell speaks with survivor Leslie Moore about a health story that can surface years — sometimes decades — after cancer treatment. In the 1970s, 80s, and 90s, thousands of young people were treated for Hodgkin lymphoma with a form of radiation called mantle radiation. It saved lives. But years later, some survivors are learning that radiation to the chest can affect the heart. Leslie shares her journey from childhood cancer survivor to facing heart valve disease later in life. Together, we talk about the long-term connection between cancer treatment and heart health, why heart screening after chest radiation matters, and how the growing field of cardio-oncology is helping protect survivors today. If you or someone you love had radiation therapy to the chest, this episode will help you understand symptoms to watch for, questions to ask your doctor, and when heart screening may be important. Topics covered in this episode: • Hodgkin lymphoma survivorship • Mantle radiation and long-term heart damage • Radiation-related heart valve disease • Cardio-oncology and survivor heart care • When cancer survivors should consider heart screening Heart2Heart Talk — where we speak from the heart, for the heart. ❤️‍🩹 📚 Educational Resources If you had radiation to the chest for Hodgkin lymphoma, these resources explain how treatment can affect the heart years later and why heart screening may matter. Radiation-related heart disease (Cleveland Clinic) ⁠⁠https://my.clevelandclinic.org/health/diseases/17409-radiation-heart-disease-overview⁠⁠ OncoLink – Late Effects After Radiation Treatment for Hodgkin Lymphoma ⁠⁠https://www.oncolink.org/support/survivorship/health-concerns-after-cancer-treatment-late-effects/survivorship-late-effects-after-radiation-treatment-for-hodgkin-lymphoma⁠⁠

    21 min
  3. Why Clear Words Change the Patient Experience

    Feb 11

    Why Clear Words Change the Patient Experience

    Welcome to Season 3 of Heart to Heart Talk — where we speak from the heart, for the heart. This episode dives into something every patient faces at some point: the words we hear in healthcare.Language can build trust… or break it. Mary shares the moment she was handed a long consent form she couldn’t understand — sick, scared, and overwhelmed. That moment changed how she sees communication in medicine. She’s joined by Alissa Hanna, Director of Patient Engagement at Edwards Lifesciences, for an honest conversation about why plain, patient-friendly language matters so much in both care and research. Together, they talk about: • Why real consent requires real understanding• How confusing medical terms push patients away• What “plain language” actually means• Tools that help patients feel confident before signing• How good communication builds trust• Why support matters long after the trial table If you’ve ever felt confused, rushed, or unsure how to ask for clearer answers — this episode is for you.You deserve to understand your care. You deserve language that meets you where you are. 🧠 About Our Guest Alissa Hanna, MPH, is the Director of Patient Engagement at Edwards Lifesciences, where she works to make research and care more human, clear, and supportive for patients and caregivers. Her work focuses on:✔ Plain-language communication✔ Improving informed-consent experiences✔ Co-creating materials with patients✔ Strengthening trust through clear, simple information 🔗 Edwards Lifesciences About HeartBridge CollectiveHeartBridge Collective is a patient-led community changing the way heart valve patients and caregivers connect, learn, and feel supported. We bridge real stories, lived experience, and expert insight so patients never have to walk this road alone. Through peer support, honest conversations, and advocacy that pushes the system forward, we’re building a space where every voice matters — and every heart has a place to land. Bridging hearts, minds, and innovation — one lived experience at a time. HeartBridge Collective #Heart2HeartTalk #ClinicalTrials #InclusiveResearch #PatientCenteredResearch #HeartBridgeCollective #LivedExperience #HealthLiteracy #HospiceSurvivor #TricuspidValveMiracle #PatientExperience

    18 min
  4. Patients: The Table We Never Had

    Jan 28

    Patients: The Table We Never Had

    S3 E5 — Patients: The Table We Never Had Welcome to Season 3 of Heart to Heart Talk — where we speak from the heart, for the heart. This episode digs into a truth patients have felt for decades:Most of the decisions in healthcare and research happen without us — even though they’re about us.For too long, patients haven’t had a real seat at the table. Mary reflects on her own journey from two years in hospice to a life-saving valve trial, and the moments when she realized just how far patients stand from the rooms where decisions are made. She’s joined by Christina Schumann,Christina’s lived experience in the Cordella CHF trial gives this conversation a depth you can’t get from textbooks. As a heart failure patient using the Cordella Pulmonary Pressure System every day, she knows what it’s like to manage symptoms, track pressures, respond to alerts, and put real trust in a device designed to keep her safer at home. Through the trial, Christina found a new sense of control over her heart failure — and a powerful purpose in helping future patients benefit from technology that makes care more proactive, more personal, and more human. Together they explore: • Why patients have been historically left out of decision-making• How lived experience strengthens research and improves outcomes• What it feels like to navigate trials without clear communication• The emotional toll of not knowing, not being updated, or not being heard• How true “patient partnership” shifts trust, equity, and access• What needs to change so patients shape the process — not just comply with it If you’ve ever felt dismissed, rushed, or like your voice didn’t carry enough weight in your own care… this episode will hit home. Patients deserve a seat at the table — and it’s time to build one that fits us. About Our Guest Christina Schumann is a remarkable patient advocate for women’s heart health and a true inspiration to many. At 50 years old, she brings the unique perspective of not only being a dedicated mother, wife, and grandmother, but also a seasoned Medical Assistant and EMT. As a heart failure patient and proud recipient of the Cordella Pulmonary Pressure System, she has firsthand experience navigating the challenges of advanced heart conditions. Her involvement as a clinical trial participant reflects her commitment to advancing cardiac care and empowering others in their health journeys. On the podcast, she shares her story to raise awareness and support women facing similar health challenges, embodying strength, compassion, and resilience in everything she does. About HeartBridge Collective HeartBridge Collective was created from Mary’s own journey — from hospice to healing through a life-saving valve trial — and the promise that no patient should ever feel alone or unheard. HBC is a patient-led community that bridges real stories, lived experience, and expert insight so patients and caregivers have support that meets them right where they are. Through peer support, honest conversations, and advocacy that pushes the system forward, we’re building a space where every voice matters — and every heart has a place to land. Bridging hearts, minds, and innovation — one lived experience at a time. HeartBridge Collective #Heart2HeartTalk #ClinicalTrials #InclusiveResearch #PatientCenteredResearch #HealthEquity#HeartBridgeCollective #LivedExperience #PatientEngagement #HospiceSurvivor #TricuspidValveMiracle

    30 min

  5. Jan 14

    Bringing Research to the Bedside: A Conversation with Dr. Sameer Gafoor

    Welcome back to Heart2Heart Talk, where we speak from the heart, for the heart. This season, we’ve been pulling back the curtain on clinical trials — what works, what needs fixing, and what it feels like to walk this road as a patient or caregiver. In this episode, we’re talking about what happens when research finally crosses into real life: 👉 How does innovation move from a lab… to an actual bedside?👉 What helps patients feel safe saying “yes” to something new?👉 And what does real shared decision-making look like when the stakes are high? Mary is joined by Dr. Sameer Gafoor, an interventional cardiologist at Swedish Medical Center known for blending innovation with heart-centered care. He’s one of those rare physicians who listens deeply, explains clearly, and guides patients through every step — especially when research becomes part of their treatment options. Together, they explore: • What “bringing research to the bedside” really looks like• Why trust and clear communication matter more than anything• The emotional side of trial enrollment — for patients and providers• Barriers teams face with paperwork, logistics, and timing• How shared decision-making builds confidence and connection• What needs to shift so trials become more open, diverse, and patient-friendly• Why the future of research depends on listening to lived experience If you’ve ever wondered what happens behind the scenes before a patient gets access to something new, this episode brings you right into the room. 🧠 About Our Guest – Dr. Sameer Gafoor Dr. Gafoor is an interventional cardiologist and a national leader in structural-heart innovation at Swedish Medical Center. He’s known for: ✔ Bringing complex research into real patient care✔ Leading teams that blend innovation with compassion✔ Explaining options in clear, plain language✔ Championing shared decision-making as the heart of good medicine His work sits right where science, humanity, and trust meet — which is exactly why he’s the perfect voice for this conversation. 🔗 Swedish Heart and Vascular Institute About HeartBridge CollectiveHeartBridge Collective is a patient-led community changing the way heart valve patients and caregivers connect, learn, and feel supported. We bridge real stories, lived experience, and expert insight so patients never have to walk this road alone. Through peer support, honest conversations, and advocacy that pushes the system forward, we’re building a space where every voice matters — and every heart has a place to land. https://www.maryburrell.com/heartbridgecollective Bridging hearts, minds, and innovation — one lived experience at a time. #Heart2HeartTalk #ClinicalTrials #InclusiveResearch #PatientCenteredResearch #HeartBridgeCollective #LivedExperience #HealthLiteracy #HospiceSurvivor #TricuspidValveMiracle #PatientExperience

    41 min
  6. From Lab to Life: Why Clinical Trials Move Slowly — and How We Fix It

    12/31/2025

    From Lab to Life: Why Clinical Trials Move Slowly — and How We Fix It

    Welcome to Season 3 of Heart to Heart Talk — where we speak from the heart, for the heart. This season, we’re digging into the real challenges inside clinical research: trust, access, delays, and what it actually feels like to wait for new treatments as a patient. In this episode, we’re opening the curtain on something everyone wonders: 👉 Why does it take so long for new treatments to reach real people?👉 And how do we make the process faster, fairer, and more patient-friendly? Mary is joined by Keith Berelowitz, founder of pRxEngage, a company focused on helping research teams and patients stay connected through technology that actually works for everyday life. His work centers on building systems that move with purpose — systems that save time, build trust, and make research more accessible to everyone. Together, they dig into: • Why clinical trials move slowly behind the scenes• What really happens inside research sites and hospitals• How technology can speed things up or create more barriers• Why access is uneven — and how to fix it• What helps patients feel informed, respected, and safe• Small innovations that make a big difference in the patient experience• The true cost of delays — for patients and for science• How co-designing with patients leads to faster, better care If you’ve ever been stuck waiting — for an appointment, a follow-up, or a therapy that could change your life — this episode will help you understand what’s happening behind the scenes, and where patient voices fit in. 🧠 About Our Guest Keith Berelowitz — pRxEngageKeith is the founder of pRxEngage, a company dedicated to making clinical research easier to navigate for both patients and research teams. His work focuses on building digital tools and communication systems that improve connection, reduce delays, and make trials more accessible for people everywhere. His expertise includes:✔ Patient-friendly technology✔ Improving trial communication✔ Reducing barriers to access✔ Designing systems with patients in mind✔ Helping research teams move faster and stay connected pRxEngage: 🔗 About Us ⁠🔗 Find Trials Near You⁠ About HeartBridge Collective HeartBridge Collective is a patient-led community changing the way heart valve patients and caregivers connect, learn, and feel supported. We bridge real stories, lived experience, and expert insight so patients never have to walk this road alone. Through peer support, honest conversations, and advocacy that pushes the system forward, we’re building a space where every voice matters — and every heart has a place to land. ⁠https://www.maryburrell.com/heartbridgecollective⁠ Bridging hearts, minds, and innovation — one lived experience at a time. #Heart2HeartTalk #ClinicalTrials #InclusiveResearch #PatientCenteredResearch #HeartBridgeCollective #LivedExperience #HealthLiteracy #HospiceSurvivor #TricuspidValveMiracle #PatientExperience

    36 min
  7. Trust, Community, and Co-Creation in Clinical Trials

    12/17/2025

    Trust, Community, and Co-Creation in Clinical Trials

    Welcome to Season 3 of Heart to Heart Talk — where we speak from the heart, for the heart. This season, we’ve been talking about some of the toughest parts of clinical research: trust, ethics, access, and what it actually feels like to go through all of this as a patient. In this episode, we’re pulling everything together and looking ahead: 👉 What does real patient-centered research look like?👉 And how do we actually get there? Mary is joined by two powerful voices doing this work every day: Behtash Bahador, Senior Director of Community Engagement & Partnerships at CISCRP, a nonprofit focused on trust, transparency, and helping the public understand clinical research. DeAnna DuBose, Senior Director of Corporate Patient Engagement at Edwards Lifesciences, who helps connect patients, engineers, and researchers so care is built with patients, not just for them. Together, they dig into: • What patient-centered research looks like in real life• Why trust starts in the community, not the clinic• How diversity and inclusion make science stronger• Small but powerful examples of co-creation• How language, design, and partnership change research outcomes• What the next 10 years of patient-centered research could hold• Simple ways anyone can get involved If you’ve ever wondered where your voice fits in research, this episode will give you a clear roadmap. 🧠 About Our Guests Behtash Bahador — CISCRPBehtash is the Senior Director of Community Engagement & Partnerships at CISCRP. His work focuses on building trust, improving understanding, and making research clearer and more accessible for patients and the public. He leads efforts in:✔ Community education✔ Plain-language materials✔ Patient advisory boards✔ Ethical and transparent communication 🔗 CISCRP: About Us 🔗 Easy To Understand Resources DeAnna DuBose — Edwards LifesciencesDeAnna is the Senior Director of Corporate Patient Engagement at Edwards Lifesciences. She brings patient voices into every stage of innovation, from engineering to clinical research. Her work centers on:✔ Trust and community connection✔ Clearer, more patient-friendly communication✔ Inclusive design and decision-making✔ Making healthcare truly human 🔗 Edwards Lifesciences — Who We Are 🔗 Learn More Here About HeartBridge CollectiveHeartBridge Collective is a patient-led community changing the way heart valve patients and caregivers connect, learn, and feel supported. We bridge real stories, lived experience, and expert insight so patients never have to walk this road alone. Through peer support, honest conversations, and advocacy that pushes the system forward, we’re building a space where every voice matters — and every heart has a place to land. https://www.maryburrell.com/heartbridgecollective Bridging hearts, minds, and innovation — one lived experience at a time. #Heart2HeartTalk #ClinicalTrials #InclusiveResearch #PatientCenteredResearch #HeartBridgeCollective #LivedExperience #HealthLiteracy #HospiceSurvivor #TricuspidValveMiracle #PatientExperience

    40 min
  8. Why Patients Don’t Trust Clinical Trials — And How We Fix It

    12/03/2025

    Why Patients Don’t Trust Clinical Trials — And How We Fix It

    Welcome to Season 3 of Heart to Heart Talk — where we speak from the heart, for the heart. This season, we’re digging into clinical trials, trust, access, and the real human stories behind the science. And we’re kicking things off with a powerful conversation about why so many patients feel unsure about research — and what it actually takes to rebuild trust. Mary is joined by Dr. Marlyn Panchoo-Brookins, founder of Insightful Intellect. She works to make clinical trials more fair, inclusive, and easy to understand for real people in real communities. She breaks down barriers, teaches cultural competence, and brings patient voices into rooms where they’ve been missing for way too long. Together, they talk about: • Why mistrust is rooted in history and everyday life• How race, gender, and geography shape who gets included• Barriers like awareness, access, and education• Why cultural competence has to be real — not performative• What true listening looks like in patient care• How researchers and patients can meet in the middle• Simple ways to rebuild trust one step at a time If you’ve ever felt dismissed, unheard, or unsure where you fit in healthcare… this episode will meet you right where you are. These conversations can be tough, but they’re full of hope too. Every small step toward trust and respect matters. 🧠 About Our Guest: Dr. Marlyn Panchoo-Brookins is the founder of Insightful Intellect and a leader in community engagement, cultural competence, and inclusive research practices. With over 15 years in life sciences and research, she helps teams understand the real barriers people face and teaches how to make research more equitable, ethical, and people-centered. Her work focuses on: ✔ Breaking down mistrust through real, honest listening✔ Bringing research closer to the community✔ Improving awareness and education✔ Teaching cultural competence the right way✔ Centering patient voices in care and research 🔗 LinkedIn: Dr. Brookins. 🔗 Insightful Intellect: About Us About HeartBridge CollectiveHeartBridge Collective is a patient-led community changing the way heart valve patients and caregivers connect, learn, and feel supported. We bridge real stories, lived experience, and expert insight so patients never have to walk this road alone. Through peer support, honest conversations, and advocacy that pushes the system forward, we’re building a space where every voice matters — and every heart has a place to land. ⁠https://www.maryburrell.com/heartbridgecollective⁠ Bridging hearts, minds, and innovation — one lived experience at a time. #Heart2HeartTalk #ClinicalTrials #HealthEquity #HeartBridgeCollective #PatientVoice #LivedExperience #MedicalInnovation #TricuspidValveMiracle #HospiceSurvivor #PatientEmpowerment

    29 min
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Ratings & Reviews

5
out of 5
3 Ratings

About

Heart2Heart Talk is a place for honest conversations about living with heart valve disease. Hosted by hospice survivor and patient Mary Burrell, we bridge the gap between clinical data and the human experience. Join patients, caregivers, and experts for raw conversations on symptoms, clinical trials, and the fears no one whispers out loud. From navigating doctors to finding your voice, we share the stories behind the diagnosis. Where we speak from the heart, for the heart.

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