March is National Kidney Month; it’s a time to not only recognize kidney disease but also to acknowledge the people who live with it every day. We often focus on the incredible lifesaving moment of transplant, but there’s a chapter that deserves just as much attention: the waitlist. For thousands of people, waiting for a kidney transplant is not a pause in life. It is a daily test of endurance, hope, and courage, carried quietly through routines, appointments, and the uncertainty of what each day may bring. Their experiences remind us that the transplant journey starts long before the call arrives.

People on the kidney waitlist often describe their lives as suspended between two realities. They work, parent, volunteer, and show up for life as best they can, all while carrying the knowledge that everything could change with one phone call. This emotional duality of hope mixed with uncertainty, defines the waitlist experience. Dialysis adds another layer. Whether it’s in‑center several times a week or home dialysis every day, treatment becomes the backbone of life. It dictates schedules, energy levels, and social plans. People on the waitlist often describe this time as feeling like a marathon where you don’t know where the finish line is. The goal is simply to keep moving forward.

How People Cope

Coping on the waitlist is not about staying positive every moment. It is about finding ways to stay grounded through the ups and downs. Many people rely on routines that bring a sense of stability, like morning coffee, journaling, or a short walk. Small joys also matter. Valerie Lows, who is currently on the waitlist for a kidney transplant, finds comfort in treating herself to a simple cup of Starbucks coffee, a moment of normalcy that helps her reset. Others turn to humor, pets, favorite shows, or creative hobbies to lighten the emotional weight. Felitha Maroney, who is another member of our community awaiting a kidney transplant, reminds herself, “for now, this is my new norm. I make time each day to recharge by sitting outside, doing a puzzle book, or getting lost in a good read.”

Support From Others

Support during the waitlist journey does not have to be big to make a real difference. Often, it is the small, steady gestures that matter most. A quick “thinking of you” text can help someone feel seen. Practical help, like rides to dialysis or a hand with groceries, can ease the burden on harder days. Listening without trying to fix anything creates space for honesty, and flexibility is invaluable when symptoms or appointments shift plans without warning.

Community connections also play a powerful role. Support groups and transplant organizations offer a sense of belonging that many people cannot find elsewhere. These spaces allow individuals to share openly, celebrate small victories, and learn from others who are further along the path.

For Felitha, the support that means the most comes from her family. They understand the changes in her life, including what she can and cannot do, the places she cannot always go, and the food restrictions she must follow. Their patience and understanding help her feel supported rather than limited. That kind of grace, whether it comes from family, friends, or the wider community, helps people feel less alone as they move through the uncertainty of the waitlist.

What They Wish Others Understood

People on the kidney waitlist often wish others understood a few important truths about what this journey is really like. Many share that they may look fine on the outside, but they are carrying a great deal physically and emotionally. Dialysis keeps them alive, but it is not a cure, and the exhaustion it brings is often invisible. Energy is limited, and fatigue shapes everything from daily tasks to social plans. Hope and fear often exist at the same time, because it is possible to be excited for a transplant and scared of what comes next. And even when the call finally comes, a transplant is a beginning rather than an ending, with recovery, medications, and lifelong monitoring ahead. For Felitha, who is on dialysis, explains one of the most important things she wants others to understand is that it is okay to ask questions. “When you are going through something new or unfamiliar, there are no dumb questions, especially when it comes to your health.” She believes no one should put themselves down for wanting clarity or reassurance. Understanding these realities helps create more compassion for those navigating the uncertainty of the waitlist.