The Hard Questions We Don’t Talk About Enough 💬
- maryrburrell
- 2 hours ago
- 3 min read
❤️🩹 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.
These are the questions many patients carry quietly.
They don’t show up in brochures, press releases, or scientific posters — but they shape real life every day.
1️⃣ Who actually does well long-term? ⏳
Not just who qualifies, but who truly thrives 5, 10, or 15 years later.
Early feasibility patients come from all walks of life — different ages, stages of heart failure, other health conditions, and life circumstances. Those things matter, even when early data doesn’t fully capture them.
Patients often notice patterns long before the research catches up.
2️⃣ How durable is “durable”? ❤️🩹
Tricuspid valve replacements are newer than aortic or mitral options, which means durability curves are still forming.
For many of us in the first cohort, we became the long-term data:
🩺 our echoes
⚠️ our complications
⚖️ our stability (or setbacks)
That lived data matters — because durability affects quality of life, future procedures, and long-term planning.
3️⃣ Who ends up needing a pacemaker — and why? ⚡
The tricuspid valve sits close to the heart’s electrical system, so changes in heart rhythm are a known risk and something doctors watch closely.
What’s missing is clear, upfront communication about:
⚠️who may be more at risk
🧬 why anatomy matters
🔮 what that could mean after the procedure
Preparation reduces fear — and leads to better, more honest consent.
4️⃣ What’s the long-term plan for blood thinners? 💊
Some patients stay on anticoagulants for life. Others taper off based on stability and doctor judgment.
The problem?
Patients often hear different answers from:
🫀 Heart specialist /cardiology
👩⚕️ Family doctor
🧪 Clinical trials
Clarity here is a safety issue.
5️⃣ What about mental health — the part nobody prepares you for? 🧠
Cardiac recovery isn’t just physical.
It often includes:
😰 fear of symptoms returning
😮💨 relief mixed with anxiety
🫥 survivor’s guilt (especially after hospice-level care)
🌱 learning to trust a body that once failed you
Research shows mental health impacts physical recovery — yet support is rarely built into care plans.
6️⃣ What happens after a trial ends? 🧭
During a trial, follow-up is clear and structured.
After the study window closes:
🔄 care transitions aren’t always smooth
❓ some providers aren’t familiar with newer valves
📂 records don’t always transfer cleanly
💳 insurance adds another layer
Patients need long-term pathways, not just 12-month data points.
7️⃣ What do early patients teach the next generation of devices? 🔬
More innovation is coming including new valve repair options (like TEER), new replacement systems, and new technology.
If we listen to early patients, we can improve:
sizing strategies
imaging guidance
post-procedure care
patient expectations
mental health support
pacemaker risk conversations
These experiences matter, because they help improve care for the next patients.
Why I talk about this ❤️🩹
Because I’ve lived the uncertainty.
Because thousands more are stepping into it now.
And because patient experience is essential to safer, more human-centered care.
👉 If you’re a patient: Ask the questions. Share what you’re feeling. Your experience matters more than you’ve been told.
👉 If you’re a caregiver: Speak up when something doesn’t feel right. You see what others may miss.
👉 If you’re a clinician, researcher, or innovator: Listen to patients early — and keep listening long after the procedure ends.
Progress doesn’t happen without patient voices.Let’s build heart care that reflects real lives, not just data points.❤️🩹