Heart2Heart Talk with Mary Burrell

Episode: #6

Guest: Dr. Lauren DiRienzo

Topic: Clinical Neuropsychology | Survivorship | Mental Load Management

Survival isn't a finish line—it’s a transition.

In our Season 4 finale, we confront a sobering reality: the same treatments that once saved us can manifest as new challenges, like heart valve disease, years later. Yet, for many in our community, the most grueling battle isn't the physical diagnosis, it’s the "Mental Radiation." It is the quiet, heavy burden of "Scanxiety," the relentless mental load of self-advocacy, and the complex tension between forced gratitude and the raw reality of survivorship.

If clinical intervention is the first half of the journey, reclaiming your peace of mind is the second. Joining us to navigate this emotional landscape is Dr. Lauren DeRienzo, a clinical neuropsychologist and Medical Affairs leader based in Boston. With a career forged at the intersection of rigorous science and deep patient empathy, Dr. DeRienzo provides a masterclass on moving from being a "forever patient" to a resilient survivor.

In this episode, we dismantle the invisible hurdles of recovery:

The Body-Mind Gap: Why emotional recovery often lags behind physical healing.

Conquering "Scanxiety": Practical strategies to manage the high-stress "waiting room" of the soul.

The Advocacy Tax: Navigating the secondary "full-time job" of being your own medical advocate.

Trigger Management: "In-the-moment" tools to steady yourself when old fears resurface.

The Gratitude Trap: Breaking the cycle of guilt and giving yourself permission to acknowledge the struggle.

We wrap this season with a definitive mandate for anyone currently exhausted by the "forever patient" journey. This finale is where we bridge the gap between hard clinical science and the raw human impact of survivorship, ensuring that emotional resilience is never a solo mission. Join us as we fortify our community, transforming shared struggle into collective strength and making sure no one navigates the transition to healing alone.

Explore the Whole Picture:

Learn more about our Guest: Dr. Lauren DiRienzo⁠⁠

Visit our Website: ⁠⁠https://www.maryburrell.com/⁠

Connect with Us: [email protected]

Subscribe to the Show: ⁠⁠Heart2Heart Talk⁠

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 #MentalRadiation #CardioOncology #PatientAdvocacy #StructuralHeart #HeartBridgeCollective #Survivorship #IntegratedCare

Episode: #5

Guest: Dr. Raj Makkar

Topics: Transcatheter Therapy | Heart Valve Repair | Heart Valve Replacement

When you’ve been told you’re 'too complex' or 'too high-risk' for surgery, it can feel like the door has been slammed shut. Today, we’re opening that door back up."

For decades, fixing a heart valve meant open-heart surgery—a high-risk prospect for survivors whose bodies have already been through the fires of radiation or chemotherapy. But cardiac care has been transformed. In this episode, host Mary Burrell is joined by Dr. Raj Makkar, a world-renowned expert at the Smidt Heart Institute at Cedars-Sinai, to discuss the evolution of transcatheter valve therapies.

With a career defined by over 5,000 procedures, Dr. Makkar is at the forefront of repairing and replacing the heart’s "plumbing" from the inside out. We explore how these minimally invasive techniques provide a safer, faster path to recovery for those whose medical histories make traditional surgery a challenge.

Strategic Insights from This Episode:

• The Power of Minimally Invasive Care: Why a catheter-based repair or replacement is often the safest choice for a survivor with "fragile" or radiation-scarred anatomy.

• Faster Recovery, More Time: How moving away from "the zipper scar" allows survivors to get back to their lives without the months-long recovery of traditional surgery.

• Rejecting the "Too Complex" Label: Dr. Makkar’s advice for patients who have been sidelined by the medical system and told there is no hope for a fix.

• The Specialist Connection: How to ensure your cardiologist understands the link between your cancer history and your valve health so nothing gets missed.

If the system has told you "no," this conversation is about finding the specialist who can say "yes."

Tune in to shift the narrative from fragmented survival to strategic advocacy. Let’s build the bridge the system forgot.

Clinical Resources:

The Structural Blueprint: Cedars-Sinai: Heart Valve Disease Guide — A clear explanation of heart valve mechanics and how to identify the signs of structural failure.

The Science of Survival: A deep-dive into how past cancer treatments "reprogram" the heart’s metabolism and the dormant cellular changes—like oxidative stress and fibrosis—that can lead to valve failure decades late

Explore the Whole Picture:

Learn more about our Guest: Dr. Raj Makkar

Visit our Website: ⁠https://www.maryburrell.com

Connect with Us: [email protected]

Subscribe to the Show: ⁠Heart2Heart Talk

Championing the whole heart—yours, ours and theirs.

#Heart2HeartTalk ##HeartValveRepair #HeartValveReplacement #CardioOncology #StructuralHeart #PatientAdvocacy #CedarsSinai

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 — Free audio lessons on navigating the system and solving medical challenges.

The Clinical Roadmap: CardioSmart: 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

Visit our Website: ⁠https://www.maryburrell.com/⁠

Connect with Us: [email protected]

Subscribe to the Show: ⁠Heart2Heart Talk

Championing the whole heart—yours, ours and theirs.

#Heart2HeartTalk #CardioOncology #PatientAdvocacy #CedarsSinai #HeartValveDisease #IntegratedCare

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/

Connect with Us: [email protected]

Subscribe to the Show: https://tinyurl.com/5xhk3pr7

Championing the whole heart—yours, ours and theirs.

#Heart2HeartTalk #PatientAdvocacy #CaregiverSupport #HeartValveHealth #IntegratedCare

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: [email protected]

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

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

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

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 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

#Heart2HeartTalk #ClinicalTrials #InclusiveResearch

#PatientCenteredResearch #HeartBridgeCollective

#LivedExperience #HealthLiteracy #HospiceSurvivor

#TricuspidValveMiracle #PatientExperience

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

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 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