Donor Diaries

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In this episode, Anthony Cernera, a three-time living organ donor, opens up about his transformative journey of giving and personal healing. His story began with a simple Facebook post that sparked a deep desire to help others, leading him to donate a portion of his liver, kidney, and stem cells. These selfless acts not only changed the lives of his recipients but also had a profound impact on Anthony's own mental health, helping him navigate struggles with depression and addiction.

Anthony shares his powerful connections with his recipients, including Lance, his kidney recipient, and a leukemia patient in California, and how these bonds have supported his commitment to sobriety. He emphasizes the role of support systems and the importance of being transparent during the donor evaluation process. This episode highlights how service and connection can be healing, providing a sense of purpose and belonging, which Anthony has found through both organ donation and his involvement in recovery work.

Listen in for an uplifting reminder of how kindness and selflessness can create positive change, not only in the lives of recipients but also for the donors themselves.  This episode is a great source of hope and inspiration for kidney donors who may have to jump through some extra hoops due to their mental health history.

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GiftWorks
Three Time Living Donor Hopes to Inspire Others to Donate
Anthony Cernera in Men’s Health
Fairfield Man an Organ Donor Three Times Over

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What would compel an American living in Germany to navigate a labyrinth of legal and cultural barriers to donate a kidney to a stranger? Join us as we uncover the incredible story of Will Johnson, whose altruistic journey sheds light on the stark contrasts between organ donation practices in the US and Germany. In this episode, recorded in a charming house near Munich, we reveal Germany's current regulations surrounding kidney exchange and the low rates of living donations that Will encountered in his quest to give the gift of life.

Embark on a transatlantic journey with us as we explore the emotional and logistical hurdles Will faced, from initial inspiration to the surprising medical discoveries along the way. Hear about the practical steps of coordinating evaluations across borders, and the varied reactions from peers and workplaces in Germany. Through Will's story, we gain a deeper understanding of the personal sacrifices and triumphs that come with kidney donation, highlighting the incredible impact of what happens when we choose to love a stranger.

Will shares: “I’ve been the recipient of much kindness and generosity throughout my life and have been blessed with good health. It felt like the right time to give back. When I learned about altruistic kidney donation, I knew without a doubt this was the perfect opportunity to do something meaningful.”

Living Kidney Donation in Germany
Global Observatory on Donation
From Germany to America: A Living Kidney Donor Story | National Kidney Foundation
Facts and myths about altruistic organ donation | Nephrology Dialysis Transplantation | Oxford Academic
Market Design Blog | Al Roth
Market Design Blog (second article) | Al Roth
Berlin Kidney Exchange Article
Living Organ Donation Donor Rate Statistics
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GiftWorks

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How old is too old to save a life? At the age of 74, Tom Duncan defied societal norms to become America's oldest non-directed living kidney donor, and his story will change the way you think about aging and altruism. Join us for an intimate conversation from his serene home in Ruidoso, New Mexico, where Tom recounts the journey that began with a friend's struggle with dialysis and led him to a life-altering decision. Discover the rigorous evaluation process, the misconceptions about age limits, and the emotional benefits of donation that go far beyond the physical act.

Tom's inspiring narrative challenges preconceived notions and societal perceptions. We also delve into the Living Kidney Donor Voucher Program, which enables donors to give the gift of life while providing future security for their loved ones. Despite his loved one receiving a kidney from another source, Tom's unwavering commitment to donation shines through. This episode is a heartfelt tribute to the power of giving at any age!  Don't miss this chance to be inspired by stories of love, resilience, and selfless generosity.  This episode is dedicated to Ernie and David.

Connect with Laurie Lee
GiftWorks

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Imagine stepping into a world where giving the gift of life is made more accessible to all.  That's the transformative journey we embark on with Ruby Rorty and Rachel Watson in the latest episode of Donor Diaries, as they share the details of a program called Project Donor. Ruby, from Stephen Levitt’s Center for RISC, shares the program's genesis and its profound impact on the healthcare sector's donor eligibility dilemma. With a focus on mutable health issues, this initiative paves the way for potential donors like Rachel, who recounts her heartening story of becoming a non-directed kidney donor and how Project Donor's comprehensive resources made her life-saving contribution possible.

Transitioning from eligibility to empowerment, our conversation reveals the personal touches that set Project Donor apart. Rachel's recount of the caring gestures she received—cards to edible arrangements—post-donation, underscores the program's commitment to holistic donor care. Echoing the significance of this support are the voices of case managers, the unsung heroes from the University of Chicago's Crown School of Social Work, who ensure a seamless experience for participants. As we celebrate both the program's success and the candid, inspiring advice shared by our guests, we're reminded of the deep connections forged through shared stories of hope, health, and humanity.

Relevant Links and Resources

Radical Innovation for Social Change (RISC)
Project Donor
Project Donor Report on American Living Kidney Donation
Challenges and Opportunities Report Summary
Crown School of Social Work
Update on Victoria, first Project Donor Success Story
Twitter Community Notes
People I Mostly Admire Podcast
Anti-obesity pharmacotherapy to facilitate living kidney donation
Obesity Statistics
Multiple Reasons for Living Donor Denial: A Single Center Experience
Outcomes of Living Kidney Donor Candidate Evaluations in the Living Donor Collective Pilot Registry

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Imagine opening your heart to a complete stranger in one of the most profound ways possible. That's exactly what our guests, Josiah Wolfson and Kat Gordon, did when they each made the life-affirming decision to donate a kidney to someone they'd never met. Their compelling stories of self-discovery and transformation are sure to resonate deeply, as they recount the moments that led them to donate.

 Josiah, a former lawyer turned spiritual nomad, describes an epic pandemic filled with change and growth, where the serenity of crafting a cob house in South America became a metaphor for rebuilding his own life's purpose. His narrative is a remarkable odyssey from the courtroom to the mountains, culminating in a gift that transcends the self. Kat, on the other hand, brings us into the fold of her own initial skepticism and the journey to understanding the profound impact one person can have. Together, they peel back the layers of their experiences, revealing the personal epiphanies and societal misconceptions that often accompany the complex giving of an organ.

 We cap off this inspiring dialogue by examining the unexpected waves made by kidney donations, from the donors' enhanced health and perspectives to the creation of a tightly-knit community—a 'tribe'—bound by their shared altruistic choice. Their narratives illuminate the human capacity for connection, and the life-altering joy that stems from helping someone in need. Listen to the full episode for a heartfelt exploration of the rippling effects of kindness and the unexpected journeys that can unfold when you decide to share your most personal parts, with a stranger. 

Show Notes

Living in Paz TicToc
Living in Paz Instagram
Living in Paz YouTube (Espanol)
Living in Paz YouTube (English)
Demonstration of a non-directed donor starting a chain
The Power of non-directed donation (story)
Why we donated kidneys to strangers
What Makes a Person Decide to Donate His Kidney to a Stranger
Patty describing her non-directed donation
how the Family Voucher Program

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LJ Dong, also known as LJ the Medium, embodies resilience and determination in her journey with Nutcracker Syndrome. Despite facing significant health challenges, LJ's refusal to discard her kidney led her on a remarkable path toward organ donation advocacy.

As the American Miss National Mrs. for 2024, LJ leverages her platform to raise awareness about the importance of organ donation. Her diverse background as an ordained Interfaith Minister, Certified Personal Trainer, Certified Sports Nutritionist, Certified Motivational Speaker, Reiki Practitioner, and author underscores her holistic approach to health and wellness.

In her books, "The Spirit of Hope" and "Think Like a Medium, Act Like a Warrior," LJ likely shares insights into her personal struggles and triumphs, inspiring readers to embrace a warrior spirit in facing life's challenges.

Moreover, LJ's starring role in "The LJ Documentary - The Story of a Warrior Spirit" further amplifies her message of resilience and advocacy. By sharing her own story, LJ empowers others to consider the impact of organ donation and the potential for transforming lives through selfless acts of generosity.

Through LJ's advocacy efforts and unwavering determination, she not only raises awareness for Nutcracker Syndrome but also highlights the importance of organ donation, ultimately making a profound difference in the lives of those in need.

2024 Living Donor Meetup in NY
Nutcracker Syndrome Facebook Page
LJ’s Website
Documentary
Instagram
Books by LJ on Amazon

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Imagine a world where living kidney donors are compensated for their life-saving gift. A world where a severe shortage of kidneys doesn't result in the preventable deaths of over a million Americans. In this riveting dialogue, we're joined by four non-directed kidney donors - Ned Brooks, Elaine Perlman, Dr. Matt Harmody, and Cody Maynard who are the founding members of the Coalition to Modify NOTA.  This team will help us uncover the implications of the National Organ Transplant Act (NOTA) of 1984. Together, they propose a life-altering solution that could end the kidney transplant wait list by offering tax credits to donors.

Living kidney donation is the gold standard of kidney care. Living kidneys last on average twice as long as deceased donor kidneys. Only living organ donors can solve the kidney shortage.

One percent of all Federal taxes that are collected is spent on patients in end stage renal disease. Every time someone gets a kidney transplant, an American can not only survive but begin to thrive again while taxpayers save money. In twenty years, the number of living kidney donors declined seven percent while the number of Americans on the kidney wait list doubled. The need for kidneys rises by seven percent per year. One million Americans will have kidney failure by the year 2030.

In today’s podcast episode we will discuss how modifying NOTA could end the transplant wait list.

Show Links

Coalition to Modify NOTA website

Join the Coalition

Bios for the 4 Founders of the Coalition

Most Americans Support Compensating Donors

The Ethics of Transplant by Janet Radcliffe Richards

The Ethics of Rewarding Living Donors symposium video 1, video 2, and video 3

A Cost-Benefit Analysis of Government Compensation of Kidney Donors 

Would Government Compensation of Living Kidney Donors Exploit the Poor? An Empirical Analysis

The Terrible Toll of the Kidney Shortage

Removing Disincentives to Kidney Donation: A Quantitative Analysis

Reducing the Shortage of Transplant Kidneys: A Lost Opportunity for the US Health Resources and Services Administration (HRSA)

The Government Can Save the Lives of more than 40,000 Kidney Failure Patients Each Year by Compensating Living Kidney Donors

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Diane Lee Reporting Live with 1 Less Kidney

Diane Lee is an Emmy nominated anchor and two-time Emmy Award winning reporter with more than 20 years of broadcast news experience.

Diane is currently the 7NEWS Consumer Anchor. Her exclusive reports focus on warning them about scams as well as highlighting money saving tips and investigating consumer issues. Diane’s “Here to Help” focus gives her a platform to assist viewers with any issues or questions they have, something that aligns with her desire to uplift others (a value that led her to donate a kidney to a stranger in 2023).

In this episode of Donor Diaries, we get a peek into Diane’s brain, just 3 weeks post-surgery to get a view of what donation looks and feels like right after it happens!  Laurie and Diane discuss some of the surprises that can emerge post donation.  Not just the physical kind, but the mental and emotional ones that sometimes pop up when we attach to specific outcomes for ourselves or our recipients.

More About Diane

In 2023 Diane won an SCBA Star Award for Investigative Reporting after her story “Before You Sell” helped an Upstate couple save their home. In 2018, she was nominated for Best Anchor among broadcasters throughout the Southeast including the Atlanta market. Prior to that, Diane won a Southeast Regional Emmy Award for a story she did on protecting oneself from identity theft and an Emmy for her investigative story on a debt collection scam.

Before joining WSPA, Diane worked as a weekday morning anchor for FOX23 News in Albany, N.Y., an evening anchor at WYOU, the CBS affiliate in Scranton, Pa, and an Anchor/Reporter at WRNN, a cable news station covering the Hudson Valley counties north of New York City.

In addition to her work in TV news, Diane loves to sing. She performs frequently with the Spartanburg Jazz Ensemble and Spartanburg Community Band. Diane produced a Christmas CD for the Children’s Miracle Network, and the project raised $20,000 for the non-profit in 6 weeks. 

Diane graduated from Northwestern University’s Medill School of Journalism. She lives in Greenville with her husband, elementary age daughter and middle school age son. She is also an avid jogger and hiker.

Links

Diane’s Website

Diane Lee 7News Consumer Anchor

Diane Lee Here to Help!

NKR Microsites

NKR Donor Shield

Alliance for Paired Kidney Donation

Story that Inspired Diane to Donate

Jamar’s News Story

Living Donors Online

Living Kidney Donors Support Group

Kidney Donor Athletes

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There’s a wide range of reasons why kidney transplant is available to some, but not all.  Imagine the lives that could be saved worldwide if we organized a globally inclusive kidney exchange.  What could be possible if we could break down borders and share kidneys with other countries?

Meet Dr. Satish Nadig, Chief of Transplant, and the Director of the Comprehensive Transplant Center at Northwestern Medicine in Chicago.  He’s an innovator and visionary, and in this episode, we get to pick his brain to learn about Northwestern and the small network of Transplant Centers pioneering an effort to increase transplants through international kidney exchange.   

Kidney failure is a global problem and is among the leading causes of death worldwide.  The kidney shortage is not a problem unique to the United States although it’s perpetuated here by the high occurrence of diabetes and high blood pressure. 
The barriers to transplant in economically developed countries are different from those in developing countries, but regardless, kidney failure in both rich and poor countries is sadly a death sentence for many.  Barriers to patients receiving a kidney transplant should be identified and removed. 

All kidney patients benefit from having access to a large pool of kidney donors.  The bigger the pool, the higher the likelihood of finding a good donor match.  This is especially important for hard to match patients that have high levels of HLA antibodies.  It’s just statistically more difficult for these patients to find a match. 

But many people who need a kidney transplant live in a small country where the pool of donors is small or worse, they might live in a country that doesn’t even have a transplant center.  Other kidney patients might live in a country with restrictions that only allow a direct blood relative to donate- having a friend or stranger donate to them isn’t an option like it is in the United States.  And in some countries, it’s possible to get a transplant, but paired exchanges are not allowed which really limits the patient’s options and access to transplant. 

Join Laurie Lee and Dr. Nadig to learn about the future of International Kidney Exchange at Northwestern Medicine and hear some inspiring stories about the lives already being saved as we start to eliminate the artificial barriers between country lines.

Links:

Northwestern Medicine Organ Transplantation Program: Quality, Innovation, Education
Northwestern Comprehensive Transplant Center
Dr. Satish Nadig Profile
Experimental Strategies in Organ Transplantation with Satish Nadig
Alliance for Paired Kidney Donation
Al Roth on Global Kidney Exchange and More
Global Kidney Exchange: opportunity or exploitation?

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Exchanging kidneys is a complicated process that involves multiple collaborations between kidney patients, living donors, transplant centers, insurance companies, airlines and more.  It’s truly remarkable if you stop to think about the number of people and organizations that need to come together to make 1 paired exchange possible.  We only started exchanging kidneys between non-compatible pairs a little over 20 years ago, so it’s a somewhat new process.  Have you ever wondered how this was made possible?

Meet Nobel Laureate Al Roth who is an economist and Stanford University professor.  Al designs markets.  He’s one of the prominent players who has made kidney exchange possible.  In a nutshell, his work has revolutionized kidney exchange around the world by using economic theory to make kidneys more available.

In October 2012, Al was the co-recipient of the 2012 Nobel Memorial Prize in Economic Sciences, together with Lloyd S. Shapley, for “ the theory of stable allocations and the practice of market design."

Al Roth is well known for his application of economics to real world problems.  In this podcast episode we touch a wide range of topics ranging from paired exchanges, prostitution, surrogacy, and more.  All of these markets are examples of repugnant markets.  Kidney Donation can be characterized as a repugnant market, and Al will tell us all about it! 

Show Notes

Abundant/ CrowdSource for Life Film
Al Roth’s Blog
Al Roth’s Website
Freakonomics Make Me a Match Episode with Al Roth

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