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...