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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It Looks Like Food
One of the harder parts of staying alive after a transplant is not avoiding the things that look dangerous. Those at least come with a warning. The bottle behind the pharmacy counter, the warning label, the prescription that arrives with a pharmacist’s short speech—they announce themselves. The harder part is the coffee. The comfort tea.…
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The Skin You’re In
There is a particular kind of appointment that arrives without fanfare and leaves you with more to think about than you expected. My first post-transplant dermatology visit was that kind of appointment. Head to toe. Literally. The dermatologist worked methodically—scalp, face, neck, chest, arms, back, legs—the kind of systematic attention that makes you realize how…
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Not Everyone Lives Down the Road
There is an assumption quietly embedded in much of transplant medicine. The hospital is here. And therefore, so are you. No one says this explicitly. No physician sits across from a newly listed patient and assumes they live ten minutes from the transplant center. And yet much of the transplant process is built as though…
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Resources for Caregivers
Caregiving through a heart transplant is one of the most demanding responsibilities modern medicine quietly places on ordinary people. The resources below are not a substitute for the support of people who understand this specific experience from the inside—but they are a starting point. Most caregivers discover them too late. If you are reading this…
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A Child’s View
When a parent faces a heart transplant, the medical system focuses on the patient. Friends and family rally around the caregiver. The children, meanwhile, are often treated as though they are peripheral to the crisis—small satellites orbiting an emergency happening somewhere above their heads. They are not peripheral. They are living inside the same catastrophe…
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
