MY STORY
From Hospice to HeartBridge Collective
When the system runs out of answers, we find each other.
"I didn't become an advocate because I wanted to. I became one because I ran out of options. I've been the patient on the table, the person in the waiting room, and the woman in hospice care."
01
The Silence of a Final Answer
There is a specific kind of silence that follows the words no patient and no family is ever prepared to hear: "There is nothing left we can do." At that time, my tricuspid valve was failing and my surgical options were exhausted. I was told there was no procedure left, no surgery to schedule, and no next step to take. For two years, I lived in the "Waiting Room of the System." I watched my health decline and my world shrink until it was only as large as my bedroom.
Living on hospice means living in the "In-Between." For those two years, my life was reduced to the four walls of my room while I waited for a miracle that hadn't been invented yet. I wasn't a patient anymore; I was a person holding onto hope while the medical world moved on without me. I was looking for a way out when everyone else was saying goodbye.
02
The Moment Everything Shifted
My story didn't change because my condition suddenly improved on its own. It changed because medical innovation finally arrived. A transcatheter tricuspid valve option became available through a clinical trial — a catheter-based miracle that did not exist when I first got sick. It was a door that was never discussed during those early years, and it opened just in time.
The Lesson
That innovation gave me my life back. It taught me something I'll never take for granted again.
Never Forget
Timing and access should never be the only things that decide who gets to live.
03
Why HeartBridge Collective Exists
After hospice, I couldn't "unsee" the gaps: the silence patients live in, the lack of guidance between appointments, and the way people are told to "be patient" while carrying impossible fear.
HeartBridge Collective was born from that space. What started as support built around my own tricuspid valve journey has grown into a home for the full structural heart community — because the in-between doesn't belong to one diagnosis. It belongs to anyone waiting on a procedure, a scan, or an answer. HeartBridge Collective is a bridge — between medicine and real life, between fear and clarity, and between patients who are tired of walking alone.
04
Why I Speak up Now
I speak up because you are more than a name on a medical chart. Your story and your experiences are your greatest strengths. At HeartBridge Collective, we are here to help you feel confident and in control. You deserve information that actually makes sense, honest talks about what's next, and a team that supports you before things get stressful. We're here to make sure you feel heard and respected, so you can get back to what matters most: simply living your life.
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If You Are Still Waiting
If you're tired of carrying fear quietly or waiting for a plan that never seems to come — take a deep breath. You aren't doing anything wrong. There isn't a 'perfect' way to be a patient or a care partner. There's just the next step, and we can take that together. You have a community here that gets it, and we're ready to walk with you until the answers arrive.