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

Seeing the Damage Others Miss

Episode: #4 Guest: Dr. Prashanth Venkatesh Topic: Healthcare Navigation | Cardio-Oncology | Heart Valve Disease The treatments that saved your life shouldn't be the ones that sideline your heart. If your symptoms are being dismissed as 'stress' or 'aging,' it’s time to change the conversation. In this episode, host Mary Burrell sits down with Dr. Prashanth Venkatesh (Smidt Heart Institute at Cedars-Sinai) to uncover the "hidden whispers" of the heart. We’re diving into why past radiation, chemotherapy, and hormone therapy often leave structural signatures that standard tests miss and how to ensure you aren't lost in the "diagnostic gap" of heart valve disease. Why This Episode is Essential: The "Lost Decade": Why a delay in medical screening guidelines means survivors must now take a strategic approach to cardio-oncology. Beyond the Standard Echo: Discover the structural "red flags" and advanced imaging clues that reveal the true impact of past cancer treatments. The Advocacy Pivot: Learn the exact, high-impact question to ask your doctor to ensure your oncology history stays at the center of your cardiovascular care. Don’t let your history be a footnote. Learn how to architect a resilient model of care that protects your heart for the long term. Tune in to shift the narrative from fragmented survival to strategic advocacy. Let’s build the bridge the system forgot. Clinical Resources. The Self-Advocacy Masterclass: Cancer Survival Toolbox [https://canceradvocacy.org/resources/cancer-survival-toolbox/?gad_source=1&gad_campaignid=6568854879]— Free audio lessons on navigating the system and solving medical challenges. The Clinical Roadmap: CardioSmart: Cancer Treatment and Your Heart [https://www.cardiosmart.org/topics/cancer-treatment-and-your-heart] Provides a visual and easy-to-understand breakdown of why the heart needs monitoring after treatment and exactly what symptoms to watch for. Explore the Whole Picture: Learn more about our Guest: ⁠Dr. Venkatesh⁠ [https://www.cedars-sinai.org/provider/prashanth-venkatesh-3320116.html] Visit our Website: ⁠https://www.maryburrell.com/⁠ [https://www.maryburrell.com/] Connect with Us: info@maryburrell.com Subscribe to the Show: ⁠Heart2Heart Talk [https://open.spotify.com/show/1OYO7svDCyjf8jwb1ivpAe] Championing the whole heart—yours, ours and theirs. #Heart2HeartTalk #CardioOncology #PatientAdvocacy #CedarsSinai #HeartValveDisease #IntegratedCare

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