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 Things You need
Nobody hands you a shopping list at discharge. They hand you prescriptions, a follow-up schedule, and a set of dietary restrictions. What you actually need to manage the day-to-day reality of post-transplant life—the tools, the devices, the supplies—you figure out by trial and error, usually after the error. This piece is the list. Everything here
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The Blood is the Life
At some point during my pre-transplant hospitalization, someone counted. Fifty vials of blood, give or take, drawn over the course of the initial workup—roughly 250 milliliters, a full cup of yourself handed over one tiny vacuum-sealed tube at a time, all in a single sitting. The arithmetic of it doesn’t fully register until you’re on
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The Fine Print
The discharge packet covers the medications, the follow-up schedule, the dietary restrictions, the warning signs to watch for. It does not cover what the next several months are going to feel like. This piece is that conversation. The Pharmacological Reality The immunosuppressant regimen is not optional and it is not gentle. Each drug is doing
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The Voice
There is a version of this story where the voice is a side note—one complication among many in an experience that had no shortage of them. A temporary setback, eventually resolved, mentioned in passing alongside the hair loss and the tremors and the rest of what the medications and the procedures took and gave back
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When the Dam Leaks
The new heart was beating. The surgery was done. By any external measure, the crisis had passed. What nobody tells you—what the discharge packet does not cover, what the follow-up schedule does not account for—is that the emotional accounting hasn’t even begun. Before the Transplant: The Exposure Starts Early The prednisone didn’t begin post-transplant. It
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
