The Caregiver’s Burden: Bridging the Gaps in a Fragmented System

The Caregiver’s Burden: Bridging the Gaps in a Fragmented System

Episode: #3 Guest: MARY BURRELL Topic: Healthcare Navigation, Caregiving & Invisible Labor When the system fails to communicate, the caregiver becomes the bridge. But what happens when that bridge is stretched to the breaking point? In this episode, host Mary Burrell addresses the "empty chair" at the table, a powerful metaphor for the invisible labor and exhaustion that define the modern caregiving experience. We’re shining the light on the high-stakes project management that families are forced to master overnight just to keep their loved ones from falling through the systemic cracks. Why You Need to Listen: The "Invisible Labor": Recognizing the shift from family member to "Clinical Coordinator" and the mental load that follows. The Systemic Disconnect: Why experts staying in their "lanes" forces you to become the primary investigator of your own health. Infrastructure vs. Advocacy: Understanding the gap between medical treatment and the actual navigation of a fragmented system. If you’ve ever felt like the only thing holding a medical journey together is your own persistence, this episode is your validation. Tune in to shift the narrative from fragmented survival to strategic advocacy. Let’s build the bridge the system forgot. Explore the Whole Picture: Visit our Website: https://www.maryburrell.com/ [https://www.maryburrell.com/] Connect with Us: info@maryburrell.com Subscribe to the Show: https://tinyurl.com/5xhk3pr7 [https://open.spotify.com/show/1OYO7svDCyjf8jwb1ivpAe] Championing the whole heart—yours, ours and theirs. #Heart2HeartTalk #PatientAdvocacy #CaregiverSupport #HeartValveHealth #IntegratedCare

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 [https://www.prosum.com]. Visit our Website: https://www.maryburrell.com/ [https://www.maryburrell.com/] Connect with Us: info@maryburrell.com Resources for Patients & Families: The Healing NET Foundation [https://www.thehealingnet.org/medical-hub]: 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

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

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 [https://www.edwards.com/patients-care-partners/heart-valve-disease-information] 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. Bridging hearts, minds, and innovation — one lived experience at a time. HeartBridge Collective [https://www.maryburrell.com/heartbridgecollective] #Heart2HeartTalk #ClinicalTrials #InclusiveResearch #PatientCenteredResearch #HeartBridgeCollective #LivedExperience #HealthLiteracy #HospiceSurvivor #TricuspidValveMiracle #PatientExperience

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 [https://www.maryburrell.com/heartbridgecollective] #Heart2HeartTalk #ClinicalTrials #InclusiveResearch #PatientCenteredResearch #HealthEquity#HeartBridgeCollective #LivedExperience #PatientEngagement #HospiceSurvivor #TricuspidValveMiracle