That's a powerful thing to sit with, looking at a timeline like this and remembering that the first mark on it was the moment I was dying, not just a data point on a chart. There is a profound difference between a clinical timeline and a lived human reality. When you look at a graphic like this, it's easy to see a series of successful regulatory steps, clinical trial milestones, and procedural breakthroughs. But behind that first entry on the chart was the reality of my life

There's a particular kind of bravery it takes to rent an electric bike in a city you've lived in for approximately five minutes. Starting out on this adventure, I did not have that bravery. But I quickly found some, mostly out of necessity. I found myself in a park not far from our new place, having one of those moments that catches you off guard, the kind that shows up in the middle of a late‑summer afternoon, when the trees are still holding their deep greens but the sun ha

I've told the outline of my story many times. A failing valve, hospice, a clinical trial, a second chance. What I haven't told is the part in the middle, the part that doesn't fit neatly into a sentence, because it isn't really a medical story. It's a waiting story. By the time I entered hospice, my tricuspid valve had already failed. My care team had been watching it happen for years, telling me plainly there was nothing yet available to fix it. That kind of sentence changes

Right after my recent visit with Dr. Beglin, I texted my family before I even made it to the car: "In two weeks I will be off potassium!!!" I couldn't wait. I've learned not to sit on good news anymore, not after everything it took to get here. The replies came fast, the way they always do in our family group chat when they know I am at a doctor's visit. My daughter, first: "That's crazy to even think of. I remember when you'd have to buy those big bottles from the pharmacy e

Many healthcare and life sciences companies genuinely want to be patient-centric some already believe they are. But there's a blind spot built into how most strategy gets made: patients get seen as data points, protocols, and market metrics. Designing strategy from inside a boardroom misses the raw, daily reality of actually living with a diagnosis. I know this gap firsthand. I spent four decades as a patient watching decisions get made in rooms I wasn't in. Decisions about m

Why Was I So Emotional? (It Wasn't Goodbye After All) Our house closes Wednesday. In a week and a half, we'll be in the Seattle area, starting over in a new city after more than 25 years in the same home. There's a lot to feel about that on its own. But nothing prepared me for what happened on the drive to see Dr. Beglin. This was supposed to be my last visit with him...my cardiologist for more than 23 years, the one who has pulled me out of some of the hardest chapters of my

Five years ago, traditional surgery was completely off the table for torrential tricuspid regurgitation. Running out of options, I made a last-ditch effort and joined a groundbreaking transcatheter trial as an early pioneer. I left with a 52mm bioprosthetic valve beating inside my chest. Now that I've officially crossed the finish line of this five-year trial, I can look back with perspective. From a data standpoint, my participation was a flawless corporate and clinical triu

I didn’t. Not for decades. I walked around believing my heart was the one part of me that was still “fine.” I trusted that silence meant safety. I trusted that no news meant good news. But here’s the truth I learned the hard way. Sometimes the heart is the last one to speak up and by the time it does, the damage has already been building for years. For me, the story didn’t start with a cardiologist. It started almost forty years earlier, in my lungs. I was diagnosed with idio

In January 2021, I took a step into the unknown. If you had looked at my medical chart back then, you would have seen the clinical reality: torrential tricuspid regurgitation. But charts don’t capture what it actually feels like to live with a failing heart valve the exhausting fatigue, the shrinking of your daily world, and the heavy weight of knowing your options are running out. Then came an opportunity to participate in the #TriscendII Early Feasibility clinical trial Thi

Two years in hospice taught me something I can’t unsee: we are capable of incredible, radical humanity but somehow, we save it for the very end. When the noise fades, when the timelines stop, when someone is finally seen as a person instead of a problem to solve. Not long ago, something shifted for me. I found myself sitting across from the medical engineers behind the valve that saved my life, the people who helped create my second chance. I listened as they reflected my sto

We’ve reached the end of our first series at HeartBridge Collective (HBC): The ICH E6(R3) Patient Experience Lens. Over the last few weeks, we’ve looked past the legal jargon and complex industry rules to ask one simple question: What does the future of clinical research actually feel like for you as a patient? If you missed any part of the journey, you can find the full breakdown of each topic here: https://www.maryburrell.com/heartbridgecollective Why This Matters Now The

This is the fifth and final post in our series explaining the new global guidelines (ICH E6(R3)) through real patient experience, not complicated policy terms. In clinical research, there are a lot of people involved: Doctors, study coordinators, sponsors, and research staff. Each person has a role, and each role has responsibilities. On paper, this is supposed to be clear. The Reality of the “Shuffled” Patient For patients, it often isn’t that clear. They’re told, “Call us i

When you live inside a clinical trial for years, it becomes more than just a medical study. It becomes part of your life story. Five years is a long time. It is filled with appointments, travel, tests, forms, and scans. It means having people checking on you constantly and knowing you are part of something much bigger than yourself. When it ended, I felt like a major chapter of my life was closing. A few things were happening at the same time: I was a patient, but I was also

This is the fourth post in our short series explaining the new global guidelines (ICH E6(R3)) through real patient experience, not complicated policy terms. Technology is everywhere in healthcare now, and clinical research is no different. You might hear terms like: Electronic consent (e-consent) Online portals Virtual visits Remote monitoring The Theory vs. the Reality In theory, all of this is meant to make research easier. Technology can be a real help when patients don’t

Everyone loves the miracle story. Hospice. No options left. Then a clinical trial. Then a second chance. For me, that second chance came through the early feasibility study of the EVOQUE transcatheter tricuspid valve replacement. I later continued follow-up as part of the TRISCEND II research studying this therapy for people living with severe tricuspid regurgitation, But what people don’t talk about very often is what happens after the miracle. When the swelling finally s

When people talk about clinical trials, they often talk about outcomes, data, and approvals. But what mattered most in my journey wasn’t just that a trial existed. It was how supported or unsupported I felt while living inside it. Behind every study are real people trying to survive long enough to reach the next option. And sometimes the hardest part isn’t the science. It’s the space in between. Here are some of the realities I lived through that rarely show up in trial repor

There’s a moment in healthcare that quietly shapes everything that comes after. I’ve lived it. It isn’t the test result, the gradient numbers, or even the final diagnosis. It’s the first contact. The first look. The first tone of voice. For me, that moment of safety didn't happen in a consultation room, it happened in a hallway during a 6-minute walk test. The Voice I Already Knew I remember my initial visit with the clinical trial doctors. It was during the height of COVID,

Cardiovascular disease is not rare. In the United States, nearly half of adults are living with some form of heart or blood vessel disease. It can affect anyone at any age, race, or background. But women face a different kind of risk. It is not just biological risk; it is a system risk. The medical system often fails to recognize these symptoms in women. Chest pain. Shortness of breath. Crushing fatigue. Dizziness. Swelling in your legs. Numbness that comes and goes. Too many

This is the third post in our five-part series explaining the new global guidelines (ICH E6(R3)) through real patient experience, not complicated policy terms. Before someone joins a clinical study, they’re asked to sign an informed consent form. In theory, this form is supposed to help people understand: 🌀 What the study is about and what will be asked of them. 🌀 What the potential risks are. 🌀 That they have the absolute right to say "no." The Reality Gap That’s the

Structural heart disease is not always a one valve problem. In today’s world of rapid transcatheter innovation, new clinical trials for aortic, mitral, and tricuspid valve disease are changing lives. Patients who once had no options now have real hope through structural heart clinical trials and transcatheter therapies. Innovation is moving fast, and that is something to celebrate. But here is the question we need to start asking: what happens when a patient who joined one he