I’ve experienced the healthcare system at its limits and I’ve experienced its breakthroughs. My journey took me from a hospital bed to hospice care to a clinical trial that changed the course of my life. So when I say clinical research should start with patients, I’m speaking from lived experience, from the places where the healthcare system didn’t quite hold. Patient-centered research sounds good on paper. And I truly believe most research teams care. I’ve met brilliant clin

🫀 The 65+ Pulse Check You can’t protect what you don’t listen to. When was the last time someone listened to your heart? ❤️‍🩹 For many people over 65, shortness of breath, constant fatigue, or feeling “just a little slower” gets brushed off as normal aging. It’s not. These can be early warning signs of heart valve disease, a condition that is often treatable if caught early. At HeartBridge Collective (HBC), we believe no one should lose their independence or quality of life

This is the second post in our series explaining the new global guidelines (ICH E6(R3)) through real patient experience, not complicated policy terms. Clinical trials can feel overwhelming. So many visits. So many rules. So much paperwork. That’s where a newer idea comes in called Risk-Based Quality. Here’s what it really means: Not every part of a study carries the same level of risk. Some things matter a lot for patient safety and trust. Other things matter… less. Risk-base

Most people know me for heart valve advocacy. That is the space I’ve lived in for years; I know the systems, I know the language, and I know exactly how to fight within them. But I’ve learned that nothing truly prepares you for the moment the fight shifts to your child. Recently, I stepped into a new kind of caregiving role with my daughter, Azure. In June of 2025, Azure learned she carries the BRCA genetic mutation, which increases her risk for certain cancers by limiting th

Life can change fast . Sometimes it’s one symptom. One scan. One “we’re not sure yet.” And suddenly you’re on a long road you never asked to be on. My story isn’t just about heart disease. It started with an idiopathic rare disease that most people including doctors have never even heard of. That rare disease set off a chain reaction that eventually led to something wild: a 52mm EVOQUE transcatheter tricuspid valve replacement —basically a new heart valve placed through a ca

February is Heart Month — and it holds more than one truth. Heart Month does important work. It raises awareness. It saves lives. It gets people talking. And there’s still a part of the conversation we don’t always make enough space for. Heart disease isn’t only about numbers, charts, or wearing red. It’s about real people living inside the system. ❤️‍🩹 It’s the woman whose symptoms were brushed off as stress or anxiety. ❤️‍🩹 The caregiver quietly holding everything togethe

This perspective didn’t come overnight. It grew out of almost four decades of living as a patient inside the healthcare system. Because Numbers Don’t Tell the Whole Recovery Story The gap between what medicine measures and what patients actually live with. The gap between a “successful outcome” and what real recovery feels like. The gap between innovation moving fast and patients being left behind. I learned about this gap by living inside it. I was the patient who looked “fi

This is the first post in a short series that explains ICH E6(R3) through real patient experience, not complicated policy terms. When people hear the words "clinical research," they often think of rules, paperwork, and checklists. But there’s a newer idea guiding research today called Quality by Design (QbD)—and it actually matters a lot to patients. Here’s the simple version: Quality by Design means researchers are supposed to think things through before a study starts, ra

In the world of medical research, we often hear about "difficult patients" who just stop showing up. But at HeartBridge Collective, we see things differently. These aren't just complaints, they are warning lights telling us the system is broken. When a patient leaves a study, researchers call it "attrition." They usually think the patient just lost interest or didn't like the medicine. But the real reason is usually much simpler: The system made it too hard to stay. The Prob

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