During Donate Life Month, we’re taking the opportunity to highlight the kidney transplant journey through the eyes of those who have lived it.
While every patient’s path to transplant is unique, one constant remains: the essential role of the healthcare team.

To better understand this relationship—and to help dialysis clinicians stay connected to the lived experience—we reached out to members
of the TransplantLyfe community with a few key questions about their transplant journeys.

🌱What Patients Appreciate Most
Across the board, participants expressed deep gratitude for the logistical and emotional support provided by their care team and care partners.
One recipient shared:

“I love how my dialysis team and transplant team collaborated. They kept me informed through every challenge and never gave up
despite the complications.”

Another participant emphasized the importance of personal support systems and knowledgeable clinicians:

“I had a very supportive family behind me. And my nephrologist was very well educated and supportive for the second transplant.
I also wonder if the process may have been simpler then, than it is now.”

These reflections underscore how meaningful it is for patients to feel supported not only clinically, but also emotionally and practically.

⚠️ Where Challenges Persist
Even with strong support, a consistent theme from the group was the sheer exhaustion associated with evaluation, listing, and ongoing reevaluation.

One recipient described the strain in detail:

“It is an extremely long, overwhelming, and taxing process that adult patients don’t get enough support on. The communication between providers
and the transplant team is often lacking. Patients on a dialysis schedule have a very difficult time scheduling the appointments required for evaluation—especially if they work or have families.”

Patients also noted that dialysis-related complications can interfere with evaluation, prolonging the timeline and increasing frustration. Several pointed out that not all dialysis clinics or nephrology practices offer robust modality or transplant education, leaving patients without the foundational knowledge needed to navigate their options.

🧩 A Fragmented System
These experiences are not isolated. Transplant is often described as a “cottage industry,” with each center operating under its own criteria, policies,
and procedures. It’s common for patients to be listed at multiple centers, which can add layers of complexity around testing, communication,
and expectations.

 

💡 What This Means for Dialysis Dietitians and Nurses — Practical Ways to Support Patients Today
The experiences shared by these transplant recipients highlight several opportunities for dialysis clinicians to make a meaningful difference right now. While many challenges stem from system level fragmentation, dietitians and nurses are uniquely positioned to help patients feel supported, informed,
and less overwhelmed during the transplant journey.

1. Help Patients Keep Track of What’s Needed
Dialysis clinicians often see patients more frequently than anyone else on their care team. That puts you in a powerful position to:

  • Check in on upcoming evaluation tests or deadlines
  • Remind patients when annual testing is due
  • Help them identify who to call when something is unclear

Even small touchpoints can prevent delays and reduce stress.

2. Ask About Barriers Early and Often
Patients may not always volunteer that they’re struggling to schedule appointments, manage transportation, or juggle work and family responsibilities.
A simple, “How are you doing with your transplant appointments lately” could make all the difference for helping them stay on track.

3. Reinforce Transplant and Modality Education
Dietitians and nurses are often the first people patients turn to with questions. You can make a big impact by:

  • Repeating key transplant concepts over time
  • Clarifying misconceptions about living donation, evaluation steps, or waitlist expectations
  • Directing patients to reliable educational resources

4. Encourage Peer Support When Appropriate
Patients repeatedly emphasized how valuable it was to hear from others who had been through transplant. One immediate option is TransplantLyfe,
a free online community where patients, donors, and caregivers share lived experience, ask questions, and support one another.

👉 You can direct patients to: transplantlyfe.com.

This kind of connection can reduce fear, build confidence, and help patients feel less alone.

A Closing Thought
Dietitians and nurses in dialysis play a central role in helping patients navigate the long, complicated path toward transplant. By offering consistent
check-ins, reinforcing education, and connecting patients with peer communities like TransplantLyfe, you can make the journey feel more
manageable — and more hopeful.

 

We thank our guest blogger Maiya Hogan, MS, RDN, CD, CNSC, Director, Research and Education for sharing her knowledge and writing this blog post!