Harnessing the Power of Storytelling to Inspire Living Donation

Published on: April 4, 2023
By Tom Occhipinti, US Head of Transplant

First established by Donate Life America in April 2003, National Donate Life Month honors those who have saved lives through the gift of living donation. We have seen first-hand the positive impact of many types of donation and know that living donation is an especially valuable and life-saving resource. Amy Waterman, PhD of Houston Methodist shares our passion for pursuing the miracles of science. As one of the nation’s leading transplant researchers and patient advocates, she was inspired by the need for more living donors.

Dr. Amy Waterman
Dr. Amy Waterman

That passion led Dr. Waterman to not only present to Congress on ways to expand the field of transplantation, but also led to the founding of The Living Donation Storytelling Project which raises awareness of living kidney donation, provides education about the organ donation process, highlights the impact it has on donors and recipients, and inspires others to become living donors. We recently connected with Dr. Waterman to learn more about the research that led to The Living Donation Storytelling Project and what fuels and drives her ongoing engagement in this important work.

Tom Occhipinti: What led you to and what continues to drive your passion for transplant?

Dr. Waterman: My passion for transplant was truly sparked when I connected with people who had donated their kidneys and they told me, in their own words, about how living donation changed their life. I met a man who became a poet after donating a kidney because the experience was so transformative he ‘finally got what life was about’.

What continues to drive my passion is that in transplant, we’re able to help people. I’m inspired when I see patients who need organs receive transplants from living donors. I’m inspired by the generous living donors and by patients who receive the donations – they are always grateful to have their health restored.

TO: What do you see as the current challenges around transplant, and how to you think we can mitigate – or overcome – those challenges?

Dr. W: The good news is that there are five-to-six thousand living kidney donations each year, but we need more. So, the challenge now is to tell more people about living donation so that we can help the more than 100,000 people who are on the waiting list for a kidney.

TO: What research led you to start the Living Donation Storytelling Project, and why is it important to you?

Dr. W: As a researcher, you’re trained to ask the question ‘what’s missing?’. The research shows people who learned about living donation and had their questions answered were more likely to become donors. It came down to reaching more people and helping people talk to one another. That’s what the Storytelling project offers: the opportunity for passionate living donors and champions of living donation to share their experiences. It’s important to me because donors can talk to donors and patients can talk to patients in depth about the many different aspects of living donation.

TO: What do you hope to see as an outcome from the Living Donation Storytelling Project?

Dr. W: First, I hope people will see themselves in the living donors and patients who are featured on the website because those touched by kidney disease are truly diverse. Second, I hope that the shared peer-to-peer stories will impart wisdom. The diversity and wisdom, paired with practical, objective medical information, offers a way for both patients and potential donors to make fully informed choices.

TO: What is the single most important thing you want everyone to know about living donation?

Dr. W: The most important thing I want everyone to know is that anyone who is healthy and doesn’t have a risk for kidney disease can be a living donor. You can be a living donor for someone you know, you can even be a living donor for someone you don’t know. You can learn more about living donation from the outstanding resources available at The Living Donation Storytelling Project.

TO: What is one piece of advice you would give or one thing you would say to a donor or recipient to encourage them to share their story?

Dr. W: Every story is important. We’ve heard from people who have been a patient or a donor as recently as six weeks ago and 25 years ago. The Living Donation Storytelling Project is about amplifying patient and donor voices. By making their voices louder, we can find people who want to hear those voices, people who are waiting for transplants, people who are in dialysis centres, families who are worrying about a loved one who needs a transplant. This is their library of resources that will help them see what’s possible, what’s on the other side, and maybe even be inspired to be donors themselves.