At HeartBridge Collective (HBC) , we support patients and caregivers alike — because rare disease is never a solo journey. It affects the whole household, the whole family, and often the same two people day after day. When a rare disease is discussed, the focus is usually on the patient. But standing right beside them is a caregiver whose physical, emotional, and mental health are also on the line. Research now confirms what families have been saying for years: the emotiona

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.

What the New Clinical Research Guidelines Mean for You Clinical research is changing. Here is what it actually feels like for you. When you’re a patient or a caregiver in a clinical trial, you don’t care about "regulatory updates" or "global compliance." You care about whether the study fits into your life. You care about whether you feel heard, safe, and respected. 👂❤️‍🩹 There is a new global guideline called ICH E6(R3) that is currently reshaping the future of research.

As a patient, I used to think success meant walking out of the hospital. Now I know success is what happens in the months and years after. This piece shares the “fine print” many of us only learn once we’re already living it. At HeartBridge Collective , we believe lived experience belongs at the center of the clinical conversation—not as an afterthought. Patients are not just study subjects. We are partners in shaping better care. Without a patient voice, the full picture is

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

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

A reflection on love, responsibility, and learning to care for yourself while caring for someone else. I was caregiving long before I was able to consent to caregiving and simply because I loved my mom and I knew she needed help. I think one of the hardest parts of being a caregiver and someone who grew up in that role is you’re faced with understanding your own mortality, as well as others, very quickly. You quickly learn how complicated and unfair life is. You quickly learn

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,

Our Most-Listened Episode of 2025 🌟 This episode showed up big on Spotify Wrapped — with 63% more listens than any other episode this year. And honestly, that doesn’t surprise me. Because this conversation needed to happen. ❤️ Why This Episode Matters In this roundtable episode of Heart to Heart Talk, I sat down with Azure Burrell and Katherine Waddell to talk about an issue that still doesn’t get the attention it deserves: Black women’s heart health . 🫀 Heart diseas

Proof that healing is possible, even when the journey takes longer than expected. Rachelle’s story reminds us that second chances are worth the wait.  First off, my name is Rachelle, and I'm thrilled to share my journey with you. Originally from Colorado, I now call Oregon home, and I'm grateful for the fresh start. I've always been passionate about exploring the mountains, and the views are simply breathtaking. However, it was during these adventures that I first noticed som

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

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