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What Happens After the Miracle? Life After Torrential Tricuspid Regurgitation
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
4 days ago3 min read


Living Inside the Gap: What Clinical Trials Don’t Always Show
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
Mar 125 min read


Lifetime Valve Management: The Gap Between Clinical Trials and Real Life
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
Mar 33 min read


The Heart’s Paper Trail: When Your Medical Record Finally Catches Up to Your Body
They say a picture is worth a thousand words. But when you live with heart valve disease, one medical note can explain years of symptoms. For a long time, I felt my body changing. I was tired all the time. My chest felt heavy. The swelling kept getting worse. But the focus stayed on my past surgeries and my pulmonary arteries. Meanwhile, something else was quietly progressing, severe tricuspid regurgitation. My echocardiograms showed moderate leakage in 2005. By 2014, it was
Feb 262 min read


Protocol to People: Stronger Science Starts With Lived Experience
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
Feb 243 min read


Heart Valve Disease in Adults Over 65: Why a Simple Stethoscope Check Matters
🫀 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
Feb 192 min read


How Scar Tissue in My Chest Led to a New Heart Valve
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
Feb 123 min read


Why “Mild” Heart Valve Leaks Matter: A Guide for Patients
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
Jan 133 min read


The Hard Questions We Don’t Talk About Enough 💬
❤️🩹 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
Dec 16, 20253 min read


Becoming the Long-Term Data: 5 Years After My EVOQUE Tricuspid Valve (TTVR) and What Comes Next
January 2026 marks the start of my fifth year living with the EVOQUE tricuspid valve, which I received through the TRISCEND II...
Oct 23, 20253 min read


The Day My Body Gave Out in a Grocery Store
💔 A Moment I’ll Never Forget. Right before I went into hospice, I could feel my body getting weaker every day. Still, I tried to keep...
Sep 11, 20251 min read


My Heart's Journey: Living with AFib and A-flutter
How Heart Valve Disease Taught Me to Listen to My Body's Other Rhythms Hey everyone, you know I'm a big advocate for heart valve disease...
Sep 4, 20252 min read


When “Back to Normal” Doesn’t Happen: The Part of Recovery No One Talks About
Redefining “Normal” After Illness The bridge between real stories and how care should be designed After a major health scare, surgery, or...
Jul 31, 20252 min read


From Misquote to Misdiagnosis: How Tori Took Control of Her Medical Story
🫀 Real Advocacy. Real Impact. Tori Lungren’s Two-Story Reminder That Your Voice Might Be the Most Important Tool You Have 🩷 PATIENT...
Jul 22, 20253 min read


How Many More Will Die Waiting for a Cure That’s Stuck in Testing?
Every life-saving treatment starts with a clinical trial . You can’t approve a cure no one is willing to test. I didn’t say yes to the...
Jul 17, 20252 min read


Patient Responsibility: A Conversation We Need to Have
Being quiet won’t protect you—but being informed just might. If you're anything like me, you didn’t choose this health journey—but here...
Jul 1, 20252 min read


The Quiet Side Effects of Survival
Because Some Wounds Don’t Show Up on X-Rays I’ve talked about this before, but I don’t think I realized just how real it was until now....
Jun 26, 20252 min read


The Body Doesn’t Lie—But Sometimes Doctors Don’t Listen
Lived Experience Isn’t Optional Data. It’s the Truth You Can’t See in a Test Doctors vs. Patients: Why Being Heard Means Everything in...
Jun 19, 20252 min read


💓 One Less Thing to Worry About: My Lp(a) Test Result
Heart stuff is never simple, especially when you’ve walked through it like I have. But sometimes, we get a bit of good news in the...
Jun 4, 20252 min read


When Your Doctor Says Yes… But the PBM Says No
Why the people deciding your treatment aren’t the ones trained to treat you. Right?! It’s absolutely wild. Your medically trained doctor,...
May 29, 20253 min read
"If no one else was telling their story, then maybe I needed to tell mine. And maybe, just maybe, that would give others permission to share theirs too."
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