This is the companion piece to “Living With Immunosuppression: What the Science Actually Says,” which covers the clinical and biological dimensions of post-transplant immune management. This piece covers what it actually felt like to live inside those constraints. My transplant was November 9th, 2024. I came home around November 21st—nine days in the hospital, a…
Part Two of Two This is Part Two of a two-part series on Cardiac Allograft Vasculopathy (CAV). Part One—“The Diagnosis Nobody Prepares You For”—covers what CAV is, the history of how medicine learned to detect it, and why the statistics that come up first on a search do not describe the situation most recipients are…
Part One of Two This is Part One of a two-part series on Cardiac Allograft Vasculopathy. Part Two — “The Long Game: Treatment, Management, and What Comes Next” — covers the full treatment toolkit, the metabolic management picture, what the transplant community has learned from years and decades of lived experience, and what ongoing management…
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…
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…
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…
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…
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…
The number 55 had been hanging there for years. Not a premonition in any mystical sense—a calculation. The kind that runs quietly in the background when you know your body well enough and have been paying attention long enough to see where the trajectory leads. When things started going downhill fast after my 55th birthday,…
A heart transplant is not a recovery. That distinction matters, and it takes time to understand it fully. Recovery implies a baseline to return to. There is no baseline. The years of decline that preceded the surgery didn’t pause while the transplant happened—they accumulated, and what they accumulated was loss. Physical capacity, yes, but also…
