❤️‍🩹 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

Get a free personalized guide you can take straight to your doctor. Knowledge can be life-saving.And when it comes to heart valve disease, sometimes the only difference between catching it early or ending up in a crisis … is knowing what to ask. I found a tool I really wish more people knew about — especially women. We get brushed off way too often as “tired,” “stressed,” or “just busy.”Meanwhile, our hearts might be working twice as hard just to keep up. This quick assessme

Some days, clinical trials remind me of show-and-tell back in kindergarten. Remember that? You didn’t just talk  about your awesome toy — you brought it in! You showed it. You let people hold it, look at it, and ask questions to really understand what made it special. Honestly… I wish clinical trials were more like that. Before anyone tries to “explain the benefits” or hands me a huge stack of papers with words I can barely pronounce, I want to see  — really see — what this t

Your story, your chemistry, your care — no one else’s body works like yours. Have you ever stopped and thought about how no two people are exactly the same?Not even identical twins. We might share the same diagnosis or take the same pill, but inside, our bodies work in their own way.Our genes, hormones, gut bacteria, past illnesses, and even how we handle stress make us unique.That’s what makes life interesting and what also makes medicine complicated. 🧬 Medicine Talks in Av

Because sometimes, healing begins when you start believing yourself. Some stories remind us just how much strength it takes to keep showing up when answers don’t come easily.Kayla’s journey with tricuspid valve disease began long before her diagnosis had a name — and her perseverance through years of uncertainty is a powerful reminder that advocacy often starts from the heart. A devoted wife, mother, and HeartBridge Collective member, Kayla has faced more than a decade of cha

How a Century-Old Mindset Still Shapes the Way Patients Are Seen and Heard I’ve been thinking a lot about why the doctor–patient relationship can feel so distant.And when you peel back the layers, it goes way back — more than a hundred years. Where This All Started Around 1910, the Flexner Report  reshaped medical training across the U.S.It pushed a strict “science first, emotions last” model. By the 1920s–1950s, that mindset had become the blueprint. Doctors were taught to:

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

When people hear my story, they often focus on the hospice part — the swelling, the breathlessness, the fear of not waking up the next morning. But there’s a side of that season that doesn’t get talked about enough: The people who kept me here. Because I wasn’t the only one fighting for my life. As my heart was failing and the symptoms were spiraling, Louis was going through chemotherapy. Two sick people in the same home. Two battles happening at once. Survival didn’t feel li

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

When I first started speaking up about my story, I had no idea how much it would teach me.I never imagined my journey could be used to highlight gaps in our healthcare system—or to help push for solutions that give patients real hope. 🫸 The Waiting Game The truth is, even after the FDA approves a breakthrough treatment , patients often still have to wait years for Medicare  to decide if it will be covered. That waiting period is sometimes called the “valley of death.” I know

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

Simply because connection was never the system’s design goal in the first place. 📱 Today I got a notification in MyChart — that little ping that’s supposed to make managing your care easier. It told me to schedule my final clinical trial appointment. So, I followed the instructions. I scheduled my echo. A few minutes later, the phone rang — it was the clinical site coordinator asking to reschedule the appointment I just made. Turns out, the doctor assigned to my study is onl

Sometimes healing isn’t loud — it’s one quiet change that means everything. When Dr. Beglin told me he was cutting my BUMEX  to just 0.25 mg every other day , I sat there shocked. I haven’t been without a diuretic since 1987 , when I was diagnosed with idiopathic fibrosing mediastinitis  — a rare disease of unknown causes, that creates scar tissue to grow inside the chest, squeezing the lungs and blood vessels and making it harder for my heart to work. Back then, medicine was

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

I stayed silent just to keep breathing. Today, my words carry purpose. When you’re fighting for your life, you speak in survival.You write in whispers.You breathe between words and sometimes between syllables. Talking was hard and some days, impossible.I’d pause mid-word just to catch air, or stay quiet to save what little I had.I had to choose them carefully, like spending the last coins of breath! Back then, breathing took all my focus, so I spoke in pieces.Short. Choppy.

The invitation that changed everything. Because sometimes, the seat at the table is the miracle. I’m so excited! We are headed to Dublin, Ireland  for the #GHHUnite Summit 🌍  The Global Heart Hub brings together people from all over the world who care about heart health — patients, caregivers, doctors, and researchers. We come together to learn, share ideas, and make sure patients’ voices are heard. 💫 Why This Means So Much It’s hard to describe what this invitation means t

Making Clinical Trials Easier to Reach and Easier to Live Through When I first tried to join a clinical trial, I had no idea how much time, travel, and hope it took. I drove to another state three times, chasing a chance at life.The first two trips ended in disappointment, a quiet, heartbreaking “no.” By the third, I was exhausted and scared, but hope wouldn’t let me stop. That final trip changed everything. It gave me my second chance at life . My daughter took time off work

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

When One Patient Reaches Out, We All Learn Something There’s something about walking beside another patient that opens your eyes all over...

Have you ever sat in a doctor’s office, listening to numbers and percentages, and thought, What does that actually mean for me? I’ve been...