After the Transplant
What someone does with time they weren't supposed to have.
I didn’t know Tristan Mace when his heart failed.
By the time we met, the story many people read earlier this month had already happened. The Thursday that felt like a cold. The Friday night his heart, lungs, kidneys, and liver all began to fail. His wife Jordan, three months pregnant, waiting in the hospital parking lot because pandemic protocols wouldn’t let her inside. A ventilator twenty minutes after he walked through the ER doors. A life-flight. A national transplant waiting list. A heart, two days later, from someone whose name he didn’t know.
I met Tristan after. The version I know is the one who came out the other side.
What I have watched, close up, over the years since we became friends, is what someone does with time they weren’t supposed to have. He has spent it building. Earlier this month, he and his team introduced Transplants.org to the world. I have been an advisor for several years. Here is why I said yes, and why I think it matters.
Tristan’s own account is worth reading in his words before or after this one: Tristan's post on LinkedIn
What I can offer is the clinical read on the speed of it.
In Tristan’s case, multi-organ failure didn’t announce itself. A cold on Thursday. By Friday night, four organ systems in crisis. For anyone who works near a hospital, the sentence that lands hardest is this one: ventilated twenty minutes after walking through the ER doors. That is not slow deterioration. That is a body shutting down faster than most people can imagine, in a window measured in hours, not days.
The other sentence worth pausing on is the one about five years of memory loss as the cost of the oxygen deprivation that came with the organ failure. He woke up alive. He woke up missing five years. The heart was a gift. What accompanied it was not.
That is worth sitting with for a few minutes. What the system counts — the transplant, the discharge, the organ function — is not the same as what the patient carries every day after they leave the hospital.
The transplant system Tristan came back into is exceptional at certain things and genuinely inadequate at others.
What it does well: the acute phase. The allocation and procurement process, the surgical care, the transplant coordinators in the immediate post-operative window. The coordination required to move a viable organ from one person’s chest to another’s in a matter of hours is remarkable. We are, as a system, very good at the part that gets you to discharge.
What comes after discharge is a different matter.
Once a transplant happens, immunosuppression is for life. With very rare exception, that medication is taken every day until the recipient dies — stopping it is how the organ is lost. The medication keeps the new organ alive by suppressing the immune system, which creates a constant balancing act: suppress too little and the body rejects the organ, suppress too much and infection becomes the threat. Over years, that same suppression raises the risk of malignancy — post-transplant lymphoproliferative disease and skin cancers among the more serious late concerns. Managing that balance across an ordinary life that includes travel, illness, aging, other medications, and stress is lifelong work. Much of that work, the patient and their family figure out largely on their own.
The questions that come up seem simple at first. Is this symptom rejection, or something else? Who do I call at 11 p.m.? What does the new doctor who didn’t do my transplant need to know? The transplant center is built for the acute phase. Over time, for many patients, it becomes harder to reach, and the answers get harder to find.
Transplants.org was built for what comes after.
It is a nonprofit focused on the full arc of the transplant journey: from first consideration through the listing process, through recovery, and through the decades of lifelong management that follow. In practice, that means resources for the patient navigating immunosuppression in year four, for the family that doesn’t know which doctor to call at midnight, for the primary care physician who took on a transplant patient without ever having trained for it. It is not affiliated with a specific hospital or transplant center. That independence matters. It lets the organization follow the patient rather than the institution.
Medical advisors from Mayo Clinic, Cleveland Clinic, Vanderbilt, UCLA, and Duke. Policy advisors with federal health legislation experience. Oracle and United Therapeutics as organizational supporters from the beginning.
My stake in this is worth naming. I have been an advisor to Transplants.org for several years. Tristan and Jordan are close personal friends. I have no equity in the organization and no financial relationship with it. I am writing this because the mission is right and the team is real, and because I have watched the work closely enough to believe both of those things.
What I bring to the advisory role is a clinical view of what the post-transplant journey looks like from the care side. My specific clinical expertise is in liver transplantation. I have some sense of what patients and families carry out of the hospital when the acute phase is over.
Tristan uses the phrase “bonus time.” It appears in the post he published earlier this month, and I have heard him use it before.
Most people who survive what he survived are grateful. Most go on to live well. A smaller number feel the pull to do something with the life they were given back. Tristan is doing something that most people, even those who feel that pull, do not do: he is building an organization for the next person in that ICU bed.
The question that comes with watching that, at least for me, is not a comfortable one. Why does it take a heart transplant recipient to build this? What does it say about the system that this organization did not already exist?
I have a partial answer. Medicine trains clinicians to deliver care within existing institutions, not to build the ones that don’t yet exist. The knowledge and the instinct to close a gap like this can accumulate over a clinical career. The capacity to act on it — the time, the access to capital, the freedom to move without institutional approval — almost never does. Tristan came back to his life with something unusual: a mission that required no organizational permission to pursue. That is an uncomfortable thing to say about a field that otherwise works hard at developing its people.
What Tristan built sits in that space — outside the institution, accountable only to the patient.
Visit Transplants.org. If you know a patient or a family navigating the transplant journey, send them there. If you are a clinician working in transplant medicine or adjacent to it, follow the work.
I met Tristan after the transplant. What I have watched since is someone doing something uncommon with the time he has. It is worth paying attention to.