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

Mary's Therapy Room wasn't a room at all. It was our backyard. No therapist ever sat there with me. There was no couch, nothing official about it at all. Just the deck, the open sky, and however many hours I needed on any given day. It was where I went to ground myself in nature the only kind of therapy available to me during the two years I spent in hospice, when my heart was failing and no one had an answer for how to fix it. I spent countless hours out there. Praying. Barg

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

We're selling our home of almost 25 years and stepping into a new chapter. As we hand over the keys, I wanted to hold onto what this house actually meant. When we first moved here, there were only three houses in the cul-de-sac. At night, it was pitch black no streetlights, no noise, just the stars lighting up the whole block. Evenings were quiet and peaceful, while the days were full of construction as the neighborhood slowly came to life. As the years passed, we watched fam

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

For decades, if your heart needed fixing, there was really one answer: open-heart surgery. For most people, that's a serious but manageable proposition. But for cancer survivors people whose bodies have already been through radiation, chemotherapy, and the deep exhaustion of getting well once already that answer often came with an asterisk. Too complex. Too high-risk. Not a candidate. If you've heard those words from a doctor, you know exactly the feeling that follows: like a

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

During my five years in a clinical trial, adherence wasn't an abstract healthcare term, it was four-hour drives to and from my study site, over and over. It was being pushed into cardiac rehab before my body was actually ready, and spending early sessions battling blood pressure drops instead of building strength. "Non-adherence" is a clinical word for something much more human: people falling through the cracks of their own care. Missed doses. Skipped follow-ups. Lifestyle c

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

This post from a local community page caught my eye, and it perfectly sums up why navigating healthcare today feels like an uphill battle. When you go to a local Emergency Room, you think you’re dealing with one unified hospital team. You aren't. Behind the scenes, many hospitals outsource their ER doctors to separate, massive corporate staffing companies. Because the hospital building and the doctor group operate as separate businesses, they run on completely separate billin

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

After 24 years, we are preparing our family home for sale. It turns out that sanding down walls is a lot like looking back at a life. You see the layers, the repairs, and the history. As I stand here covered in the dust of two decades, the lessons I learned during my years in hospice have never felt more urgent. Hospice teaches you that we don’t actually own anything. Not a house, not a title, not a status. We are just stewards for a little while. The only thing we truly leav

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

As we get ready to celebrate our first birthday on May 14th , I’ve been doing a lot of thinking. We’ve spent the last year proving that a patient-led movement is exactly what this industry needs. But to make sure HeartBridge Collective (HBC) is here for the long haul, I’m making a deliberate choice to shift our focus inward for a few months. Think of it as a "Power-Up" phase. We are strengthening our foundation so we can show up even stronger for the community in Year Two.

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