August is National Multiethnic Donor Awareness Month, which highlights the need for more organ donors, especially in communities of color. More than 90,000 people in the United States are waiting for a kidney. In 2024, Black patients made up 30.5% of adults on the kidney transplant waiting list.
During Thanksgiving week 2023, after years of dialysis, testing, appointments, and waiting, my brother David received a new kidney at a major transplant center in Chicago. Although my nephew wanted to donate directly to his uncle, they were not compatible, so he donated through a paired exchange, allowing David to receive a kidney from someone else.
We were relieved and excited about this new chance at life. We started talking about trips we could take and things David could do now that his life would no longer revolve around dialysis. After so much waiting, we were finally making plans for what came next.
Before the transplant, the coordination was remarkable. We knew where David needed to be, when he needed to be there, who was responsible, and what needed to happen next.
But after he came home, that clarity began to disappear.
Less than four months later, on March 9, 2024, David died. He was 56.
I cannot say that inadequate follow-up care caused my brother’s death. I can say that, while recovering from major surgery and learning to live with a new organ, he was too often left to navigate a fragmented medical system on his own.
Some gaps seemed small. We received teaching about his medications, urine bag, and warning signs. But no one suggested a raised toilet seat, even though lowering himself onto a standard toilet was painful after abdominal surgery. No one told us that basketball shorts or loose pants would make it easier to accommodate his urine bag. These are not small things when you are trying to use the bathroom, get dressed, and move around your home without worsening your pain.
Then the gaps became more consequential.
Within days, David and I were asking basic questions. Who was his post-transplant coordinator? Why had that person not contacted us? Who was responsible for scheduling his follow-up appointments? We had asked these questions before leaving the hospital and were told that we’d receive information at that initial post-transplant clinic appointment.
David was going back to the transplant clinic two or three times a week. But frequent appointments are not the same as coordinated care.
The clearest example was his diabetes. As his new kidney began functioning, David noticed that his blood sugar patterns were changing. After taking insulin, he felt sluggish and had trouble thinking clearly. The transplant team told him to call his former endocrinologist, who could not see him until mid-January. They then referred him to an endocrinologist in their own system, who could not see him until late January.
David went back to the transplant team and explained that he needed help now. He was again told that insulin management belonged to endocrinology.
So David reduced his insulin himself. Almost immediately, he felt less sluggish and more clearheaded.
At his next transplant visit, a physician assistant chastised him for changing the dose. He was told that he was being reckless and that his decision showed that he did not value the kidney he had received.
No one asked him why he had changed it.
The system had left him to manage a potentially dangerous problem on his own and then blamed him for doing so.
David’s experience is one case. It cannot tell us how often gaps in post-transplant care contribute to poor outcomes. But nearly one in four kidney transplant recipients is readmitted within 30 days, and early readmission is associated with higher risks of graft failure and death during the first year.Those findings do not tell us whether inadequate follow-up caused those outcomes. But they do show that what happens after patients go home deserves serious attention.
Federal regulations require transplant programs to have clinical transplant coordinators. But what does coordination mean if patients do not know who their coordinator is or cannot get help when a problem crosses specialties?
A referral is not a handoff when no one on the other end can see the patient.
We should absolutely encourage more people to become organ donors. My nephew’s decision to donate a kidney to a stranger so that his uncle could receive one was an extraordinary act of love and generosity. During National Multiethnic Donor Awareness Month, Black families and other communities of color are encouraged to consider making that kind of gift. And if we are going to ask people to give so much, we have an obligation to build a system that supports recipients in protecting what they have been given.
Before discharge, patients and caregivers should know who is responsible for their care, how to reach that person, and what to expect at home. When an urgent problem requires another specialty, the transplant team should remain responsible until someone else actually takes over.
Transplant centers should also be accountable for whether patients can reach their care teams, whether urgent referrals result in timely care, and whether patients and families feel prepared for what happens after they leave the hospital.
David should not have had to coordinate a fragmented medical system while recovering from major surgery and learning to live with a new organ. He deserved care that was as organized after the transplant as it had been before it.
Do I know that my brother would still be alive if he had received better post-transplant care? No.
But I would have loved for us to have had the chance to find out.