I chose life three times….
The Story
For more than two decades, I lived with congestive heart failure. I managed it through diet, discipline, and stubbornness—and for a long time, that was enough. Then it wasn’t.
In the fall of 2024, I arrived at a hospital unable to walk more than ten feet on my own. My ejection fraction was 5%. Death came to my bedside more than once. More than once, I told it no.
On November 9th, 2024, a surgeon removed my heart and replaced it with someone else’s. This is the story of what led to that moment, what happened in the OR, and what life looks like on the other side of it.
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The House Before the Door Opens
The discharge date arrives and the caregiver shifts into a different kind of motion. The vigil is ending. The person they love is coming home. After weeks of waiting and managing and absorbing things that had no resolution, there is finally something concrete and completable to do. So they clean the house. They move furniture.…
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The Hospitalization
The hospital is built for the patient. Every system, every protocol, every staff interaction is organized around the person in the bed. The caregiver walks into that institution and immediately discovers they have no designated place in it. There is no orientation, no handbook, no role definition. They are expected to be constantly available, immediately…
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Permission to Feel
There is a narrow emotional script caregivers are expected to follow. Be strong. Be grateful. Be present. Be hopeful. Hold it together for the person in the bed, for the children at home, for the medical team that needs your cooperation, for the friends who don’t know what to say and are watching your face…
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The Roads In
By the time a heart transplant happens, the medical team has been focused on one thing: keeping the patient alive long enough to receive a new organ. That focus is appropriate. It is also incomplete. Because surgery is not the beginning of the story—not for the person sitting outside the operating room. For the caregiver,…
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The Other Side of the Bed
The transplant system is extraordinarily good at keeping the patient alive. It is a synchronized, meticulously calibrated engine—surgeons, coordinators, immunologists, pharmacists, and technicians working in absolute alignment to drag a human being back from the edge of mortality. What the system is significantly less good at is supporting the person in the chair next to…
About James Nerlinger
I’m a writer, developer, and home cook living in Cincinnati, Ohio. I spent twenty-two years managing congestive heart failure before receiving a donor heart on November 9th, 2024. This blog is the story of that journey — and everything that comes after it.
Choosing life, one beat at a time.
Contact
Thoughts? Comments? Discussion?
JNJ@OneMoreBeat.com
