Everyone loves the miracle story. Hospice. No options left. Then a clinical trial. Then a second chance. For me, that second chance came through the early feasibility study of the EVOQUE transcatheter tricuspid valve replacement. I later continued follow-up as part of the TRISCEND II research studying this therapy for people living with severe tricuspid regurgitation, But what people don’t talk about very often is what happens after the miracle. When the swelling finally s

When people talk about clinical trials, they often talk about outcomes, data, and approvals. But what mattered most in my journey wasn’t just that a trial existed. It was how supported or unsupported I felt while living inside it. Behind every study are real people trying to survive long enough to reach the next option. And sometimes the hardest part isn’t the science. It’s the space in between. Here are some of the realities I lived through that rarely show up in trial repor

There’s a moment in healthcare that quietly shapes everything that comes after. I’ve lived it. It isn’t the test result, the gradient numbers, or even the final diagnosis. It’s the first contact. The first look. The first tone of voice. For me, that moment of safety didn't happen in a consultation room, it happened in a hallway during a 6-minute walk test. The Voice I Already Knew I remember my initial visit with the clinical trial doctors. It was during the height of COVID,

Structural heart disease is not always a one valve problem. In today’s world of rapid transcatheter innovation, new clinical trials for aortic, mitral, and tricuspid valve disease are changing lives. Patients who once had no options now have real hope through structural heart clinical trials and transcatheter therapies. Innovation is moving fast, and that is something to celebrate. But here is the question we need to start asking: what happens when a patient who joined one he

I’ve experienced the healthcare system at its limits and I’ve experienced its breakthroughs. My journey took me from a hospital bed to hospice care to a clinical trial that changed the course of my life. So when I say clinical research should start with patients, I’m speaking from lived experience, from the places where the healthcare system didn’t quite hold. Patient-centered research sounds good on paper. And I truly believe most research teams care. I’ve met brilliant clin

In the world of medical research, we often hear about "difficult patients" who just stop showing up. But at HeartBridge Collective, we see things differently. These aren't just complaints, they are warning lights telling us the system is broken. When a patient leaves a study, researchers call it "attrition." They usually think the patient just lost interest or didn't like the medicine. But the real reason is usually much simpler: The system made it too hard to stay. The Prob

You may remember I wrote about a scheduling " snafu " earlier this year. I wish I were writing to say things have improved. Instead, I am posting this update because the same communication problems continue to affect my clinical trial care. This isn’t just about one missed appointment or a simple mistake. It is an ongoing pattern—a systemic problem that places the burden of coordination directly on the patient.  It is creating stress that doesn’t need to exist—for me or

As this year comes to a close, I’ve been reflecting on the last 12 months of my personal life. A lot of it was heavy. A lot of it required honesty — even when I didn’t feel ready for it. If I’ve learned anything this year, it’s this: life doesn’t wait for us to feel ready. A Year That Didn’t Pause ⏳ This year, my husband Louis faced a cancer recurrence while I was dealing with my own cancer scare. There was no pause button.No moment where life slowed down so we could catch o

Why awareness, earlier answers, and patient voices matter in carcinoid heart disease and valve care ✨ What I Learned Today I love sharing the things I learn along the way, especially when it’s something I wish patients were told sooner. Today’s lesson? How some rare cancers can damage the heart long before anyone realizes what’s happening and why this matters more than people think! Some rare cancers, like carcinoid tumors, can release too much serotonin into the bloodstream.

❤️‍🩹 A patient’s perspective from someone who lived early feasibility When you’re one of the first people to receive a new heart valve, you learn pretty quickly that innovation is both a miracle and an evolving standard of care. I was an early feasibility EVOQUE patient — part of the group whose outcomes helped shape future FDA approval. The valve saved my life. But being in that first wave also meant stepping into a space where long-term answers were still being written. Th

Because lived experience explains the “why” behind every statistic.   ❤️‍🩹 I can’t shake this one line that keeps echoing in my head: “Data comes alive through a real human story.”  ✨ It sounds like something you’d jot down during a meeting about “impact,” right?But honestly… that line sums up my whole life.A little humbling. A little exhausting. And every bit is true. The Two Worlds We All Move Through 🌍 Most of us bounce between two very different worlds. 1. The World of

I’ve been thinking about something we don’t talk about enough in the research world: Sometimes the very systems meant to protect us  end up silencing us . We see it with pregnant women being excluded from studies. But let’s be honest — it doesn’t stop there. 🚫 Safety Shouldn’t Mean Exclusion IRBs (Institutional Review Boards) exist to keep people safe. I respect that. Their mission is critical. But safety shouldn’t mean exclusion. And protection shouldn’t mean making decisi

Hey friends, ❤️‍🩹 I wanted to share something that’s been on my heart — and honestly, a big part of why I’m still here. Saying yes wasn’t easy. It meant trusting a system that wasn’t built for women like me.But that “yes” gave me life — and a purpose to change what wasn’t meant for me. ❤️‍🩹 Most Women Don’t Realize How Left Out We’ve Been It’s time to change that. Even though heart disease is the #1 killer of women , we’re still underrepresented in the research meant to sav

I’m not here to throw shade — just to shine some light. ✨ Clinical trials save lives.I’m living proof of that. They give people like me a second chance when options run out.But even with all the science and structure behind them, trials still have a deeply human  side that doesn’t always get enough attention. What I’ve learned and what we talk about often at HeartBridge Collective is that connection can start to fade even before  a trial ends. People move on.Coordinators cha

January 2026 marks the start of my fifth year living with the EVOQUE tricuspid valve, which I received through the TRISCEND II...

Living through a trial taught me the truth and why patients need to be heard . I never gave clinical trials much thought. In my mind,...

I spent two years on hospice  because my tricuspid valve disease had no good options. Surgery wasn’t possible for me, medicines weren’t...

We are living in an extraordinary era for medicine. Every day, it seems we hear about new breakthroughs, from revolutionary medical...

When new trial results are announced, the headlines often sound hopeful: “this treatment helped most patients.” But averages only tell...

Early follow-ups kept me seen. Then came the silence. As part of an Early Feasibility Study , my first year after receiving a...