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...

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Giving words to the worries I carried inside. I talk a lot about hope and second chances, but the truth is I carry fears with me too....

There are hours you can count and hours you can’t,  the kind that fold into one another until days feel like a single long breath. I...

The words hit you like a wave: “We’ve run all the tests, and we just don’t know what’s wrong.” For a long time, I thought those words...

When my heart starts to race or flutter, it can sometimes stop me in my tracks. It’s like my whole day suddenly changes. Fear shows up...

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,...

💔 A Moment I’ll Never Forget. Right before I went into hospice, I could feel my body getting weaker every day. Still, I tried to keep...

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

How Heart Valve Disease Taught Me to Listen to My Body's Other Rhythms Hey everyone, you know I'm a big advocate for heart valve disease...