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...

A reminder that every reaction, emotion, and question tells a story worth hearing. There's a moment in every care journey when you feel...

The unseen moments that define what it means to keep going. At one point in my journey, my whole life felt ruled by lab results. Every...

A look at the real truth of living and sometimes laughing through hospice. When I was in hospice, I kept a diary. It became my way to...

Walking side by side through surgery, caregiving, and hard choices. I had posted previously about testing positive for the BRCA2 gene ....

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...