Real patient stories inspire and educate

Amanda Lipsey Donation Stories, From the Founder, Transplant News

Celebrating National #BlueGreenDay and the launch of the Living Donation Storytelling Library at TREC!

Some of our earliest memories are of hearing stories read to us by our parents – fairy tales, fables, adventures, and epic journeys. Storytelling is an innate and universal part of the human experience. Stories help us make sense of our lives, mark important occasions, and share and connect with the people who matter to us. From founding myths like the tale of Romulus and Remus to true accounts of heroism, or even casual stories of our nightmare morning commute, cultures the world over use stories to frame their values, identity, and history.

The first historical records were oral traditions, stories passed from generation to generation. Today, with social media, we’ve all become the stewards of our own stories – we curate and share them – and we connect in ways that are wholly new. Stories are powerful, they can make us laugh or cry, teach us, or motivate us. My work in transplant has shown me this time and time again.

Stories shared with me by patients, donors, transplant recipients, and the many family and friends who support them have touched me personally – they have changed me, made me better, inspired me to keep doing the work that I do no matter the challenges, whatever is required. I will never forget the stories recounted to me as a young graduate student making calls for a transplant center. It started out as a way to make my rent payment, but it turned into my passion and life’s work.

Picture this: you’re in your early 20s, working on your PhD in social psychology and trying to live off $12,000 per year. You take a job in research at the local transplant center and they ask you to start calling former donors to assess whether people regretted donating a kidney. They give you a list of questions to go through. Did you have complications during the surgery? Did you end up getting divorced from the partner who you donated to? Did you get in an accident on the way home from your post-op visit? Every possible bad thing that could have happened to a donor. And you think, “asking these questions is going to be so stressful.”

But day after day I called, and living donors kept sharing these wonderful life-affirming stories. They said things like ‘I wish I had another kidney so I could donate it too!’ or how they felt that they personally had been given a gift. In giving life to another, they felt as though they learned something important about what is truly meaningful in life. And, I got a chance to listen in.

The one thing donors wished had been different was the availability of education going into the process. Many donated without ever having known another living donor, without having heard first-hand what it was like. And so I have spent the past two decades working to change that so that every prospective living donor and person considering having a living donor kidney transplant can access the best health education available. It has been a labor of love, and one that has brought me to this very exciting moment when I can announce the formal launch of the Living Donation Storytelling Project.

The Living Donation Storytelling Project is a way for living donors, transplant recipients, and their family, friends, and allies to share their personal experiences about the living donation and transplant process. It is an ever-growing collection of candid and heartfelt video stories shared by people of diverse racial and ethnic backgrounds, life experiences, and geographic region. Not only do these video stories honor the experience of patients and donors, but they also serve as a way to raise awareness about kidney disease and transplant, and as a resource for prospective patients and donors.

Using an innovative digital platform, participants can record video stories easily and from the comfort of their own home, or car…virtually anywhere. All that is needed is a smartphone, tablet, or laptop with a camera. This technology is incredible because it means that we can capture every voice and let them share what is most important to them. We can reach communities that have been historically left behind when it comes to pursuing living kidney donation.

Health information can be dense, dry, and impersonal. These video stories are like talking to a friend across the kitchen table. They are authentic and poignant. My team and I have laughed and cried along with the storytellers as we watched them. It is our hope that these stories will be a point of entry for those who are just learning about living donation, and a way to connect them to comprehensive education. I invite you to be inspired, to learn, to listen. These are the voices of living donation.

This project would not have been possible without willing patients, donors, and family members, who helped us learn how to use this software because they believed in the potential of this project to do good. We also thank all of our transplant center partners who helped connect us to these amazing people to tell their own stories.

Finally, we wouldn’t be anywhere without our key partners including UCLA, the Terasaki Research Institute, Health Literacy Media, and 501 Creative. This is a project over a year in the making.

If you want to hear more stories or add your own to the library, please visit ExploreLivingDonation.org. If you want to learn more about transplant and living donation, please visit ExploreTransplant.org or our interactive transplant decision tool, My Transplant Coach. And, happy Donate Life Blue and Green Day to all!