Nobody Prepares You for the In-Between: Life After a Heart Diagnosis

There's a voice that's still too often missing from cardiovascular research and care: the patient's.

I know because I lived it. I'm a hospice survivor and an early-feasibility heart valve patient, someone who has walked through complex procedures, long stretches of uncertainty, and the slow, unglamorous work of recovery. Nobody prepares you for the in-between. The waiting room of the system, where you're technically "doing fine" on paper but still trying to figure out who you are on the other side of a diagnosis.

That gap is where HeartBridge Collective, LLC (HBC) was born.

We exist to support patients and care partners in the space clinical care doesn't reach: the space between appointments, between diagnosis and understanding, between fear and finding your footing. HBC is not a source of medical advice. We don't diagnose, treat, or make decisions for you. What we offer is something just as vital: a bridge of lived experience, built by people who've actually been where you are.

How We Support Patients and Patient-Centered Research

Peer Support: Mentors Who've Walked It

HBC connects patients and care partners with mentors who've walked a similar path. Our mentors offer emotional support, shared perspective, and honest encouragement, never clinical guidance. Every mentor relationship operates within clear boundaries: no treatment recommendations, no replacing your care team. Just people who understand, because they've lived it too.

Education & Storytelling

Through our Heart2Heart Talk podcast and the stories our community shares, we help patients understand the human side of research, treatment, and recovery: the questions nobody thinks to ask ahead of time, and what it actually feels like to go through this.

Patient Voice in Research

Our goal is to bring lived experience into the research process itself. As HBC grows, we plan to pass along the common themes we hear from patients, without names or personal details, so researchers, clinicians, and industry partners can improve how studies communicate with participants, how consent is explained, and how people are supported before, during, and after a Structural Heart Clinical Trial. Our role here is advisory and experiential, never clinical or operational.

Where We Are Today

HBC is still young, and growing with intention. Right now, we're:

• Exploring collaborations with academic and research institutions focused on patient engagement

• Building peer-to-peer support within clear, non-medical boundaries

• Engaging in conversations with organizations like Stryde Research and pRxEngage to help strengthen ethical, patient-centered research practices

Everything we do is grounded in respect for institutional policy, IRB guidance, and participant protection.

Why It Matters

When patients feel supported and understood, they stay more engaged in their care, in research, and in their own recovery. Lived experience doesn't replace clinical expertise. It makes the whole system more human. And that, in the end, is what HeartBridge Collective is here to build: not just information, but connection.

You don't have to navigate this alone. That's the whole point of the bridge.

Ready to be matched with a mentor who's been where you are? Patients and care partners can join and get matched here.

Want to be part of the bridge in another way, or have a question first? Follow HeartBridge Collective for more of this: the parts of structural heart disease recovery nobody puts in the brochure. Reach out at info@HeartBridgeCollective.org

Mary Burrell

Founder, HeartBridge Collective