Why good medical news can still feel scary when you’ve lived through heart failure Friday, I walked into my cardiology follow-up feeling pretty confident. I’ve been feeling really good. Like… good-good. More energy. More good days than hard ones. That stretch where you finally start to exhale and think, “Okay… maybe we’re steady.” So I expected a normal appointment. Maybe a “keep doing what you’re doing.” Maybe a small adjustment. But what I heard instead? I was not ready for

There’s a part of the recovery manual that’s missing. Hell, there is no recovery manual. After my heart event, my brain changed . And I’m not talking about ‘oops, I forgot where I put my keys.’ I’m talking about a system failure . I’m talking about the lights being on, but the wires being frayed. I’ll be in the middle of writing a blog… or sharing my lived experience… something I know in my bones… and then my mind goes blank. 📖 The word disappears. 📖 The thought disappears.

Tricuspid Valve Regurgitation, Explained in Plain Language I’m listening to a non-invasive cardiologist  explain tricuspid valve regurgitation (TR)  grades, and I hear this a lot: “Mild” and “trace” are clinically irrelevant.They don’t matter. I understand what that means medically .But here’s the truth — it still matters to patients. Let me explain why 👇 🩺 What Doctors Are Taught In medical training and guidelines: Trace or mild TR is very common Many healthy people have i

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

Some seasons in caregiving feel like you’re holding your breath… and then finally letting out a slow exhale when you hear, “He’s doing okay.” That’s where we are right now. Louis had another round of scans this fall. The good news? Most of the swollen lymph nodes in his body have stayed the same or gotten smaller. The only change was under his left arm, where the nodes got bigger — so his doctor did a biopsy to check everything. The biopsy confirmed his CLL is still present,

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

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

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

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