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
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
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
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
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 Lee 7News Consumer Anchor
Alliance for Paired Kidney Donation
Story that Inspired Diane to Donate
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?
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
Meet Phillip Hanks, a walking miracle!
Philip had his first liver transplant in 2007 and lived an active life. Then in 2019, extreme pain sent him back to the hospital where he received horrifying news. Not only did he need a new liver, but he needed a new stomach, intestines, pancreas, and kidney. Two different transplant centers turned him away before Indiana University accepted his case and agreed to try the risky surgery which basically involved removing all of his organs and replacing them with donor organs.
Phillip not only survived but is thriving after a 5-organ transplant during the pandemic. Join Laurie and Philip for a riveting story about hope, faith, perseverance, and what it means to never give up.
Philip is open to connecting to anyone who needs a shot of inspiration and can be reached at Phillipohanks@gmail.com
Buy Hanks’ book, My Story God's Glory: The Story of A Walking Miracle
On Amazon
Barnes and Noble
Apple Books
Google Play
Do you ever stop to think about the effectiveness of the time and attention you put towards making a difference? We all have the power to make the world a better place, but what could be possible if we all put more thought into maximizing our personal and financial resources?
Welcome to the world of Effective Altruism (EA) with non-directed kidney donor Dylan Matthews, a senior correspondent from Vox’s section Future Perfect. Future Perfect reports on people and institutions trying to do the most good for the world they can. Kidney donation is an unusually good way of help somebody, such that a given amount of effort goes an unusually long way. And that’s what Effective Altruism is all about.
In this episode, Dylan walks us through the EA Movement, and discusses how many people in the EA Community are kidney donors. Come check out the EA Community with us and take a look at the practical thinking that supports living kidney donation as an effective way to truly make a difference.
Show Notes
Future Perfect
Givewell
Giving What You Can Pledge
Animal Charity Evaluators
The Kindest Cut in the New Yorker
Alexander Berger, 80,000 Hours
Josh Morrison
Waitlist Zero
Community Tax Aid
VITA
Center for Effective Altruism
Have you ever wondered why some people have a powerful drive to donate a kidney or liver to a stranger, while others would never consider such a thing?
Professor Abigail Marsh has spent over a decade answering this question through studies on topics such as altruism, empathy, and the depths of human nature. She answers complex questions such as: How do we understand what others think and feel? What drives us to help other people? What prevents us from harming them
Abby’s Laboratory on Social & Affective Neuroscience is located at Georgetown University. Her lab’s research includes behavioral and brain imaging investigations of human social behaviors ranging from extraordinary altruism to serious conduct problems in children, adolescents, and adults. She is also author of the book, The Fear Factor, which examines how one emotion (fear), connects altruists, psychopaths, and everyone in between.
Come take a tour of your brain with Abby Marsh and Laurie Lee, and explore the extremes of human generosity and the mechanisms underlying our capacity for empathy and ability to identify fear.
Showlinks:
Prof. Abigail Marsh’s Website
The Fear Factor
Abigail Marsh’s Ted Talk
Publications
Abigail Marsh on 60 Minutes
National Kidney Donation Organization
In 2018 Martha donated a kidney to a woman she read about in the newspaper. She co-authored a book, Kidney to Share, published by Cornell University Press, about that experience and has given presentations at more than 35 transplant clinics, medical schools, and bioethics centers on her experience as a living kidney donor.
In today’s episode, we discuss donor disincentives- the factors that can make it difficult for somebody to donate a kidney, even though they may really want to. Martha breaks these disincentives into 3 categories: logistics, psychosocial and financial. The top 3 disincentives facing donors are the cost of travel and lodging associated with donation, loss of income while recovering from surgery, and cost of home and/or dependent care during the donor’s recovery.
Martha speaks candidly about her donation experience and how some of these disincentives made it difficult to donate a kidney. She also discusses how the disincentives she experienced may disproportionately affect a donor with a different background than her.
About Martha:
Martha Gershun is a nonprofit consultant, writer, and community volunteer with over 40 years of leadership experience in Fortune 500 corporations, start-up ventures, and non-profit organizations. Gershun graduated with a B.A. cum laude from Harvard University and holds an M.B.A. with first year honors from the Harvard Business School, where she studied marketing, service operations, and customer experience. She earned a graduate diploma in Economics from the University of Stirling, Scotland, where she was a Rotary International Fellow.
References
Removing Disincentives to Kidney Donation
Kidney to Share
Martha Gershun
According to United Network of Organ Sharing, only 133 living donors in the entire U.S. have donated both a kidney and a portion of their liver to two different recipients. A few years back, this was very uncommon, but more recently, we have been seeing it in the news more and more. Many transplant centers won’t even entertain the idea of letting someone donate twice, however other transplant centers are taking a second look, and essentially asking, well, why not? If the donor is emotionally and physically fit to donate a second time, then let them donate.
Today’s guest is double donor extraordinaire Lynn Bolduc who donated a kidney and a portion of her liver, both to strangers about 8 years apart. Lynn tells an emotional story about a traumatic experience when she was 14, that ultimately led her down the path of organ donation later in life. Her kidney donation story and her liver donation story are vastly different and illustrate that not all donation stories have the ending that we planned for. Tune in to hear Lynn’s brave, bold, and vulnerable story about inspiring hope.
Links
CrowdSource for Life
1 Year Survival Rate Post Transplant
Missouri Farmer Lives 56 Years Post Transplant
National Kidney Donation Organization
Welcome to Season 2 of Donor Diaries!
To kick of season 2, we are going to jump into some basics about kidney donation- some helpful Q&A for anyone out there who may identify as donor-curious. You’ll also get a peak onto Season 2, and hear about some of our upcoming guests!
Kelly Schmitt, Patty Graham and Emily Wise are not only living kidney donors themselves, but they work full time educating potential donors through a program called Donor Connect, a donor mentor program facilitated by the National Kidney Donation Organization.
This mentor program serves potential kidney donors from over 30 transplant centers affiliated with the National Kidney Registry.
Early data shows that a living kidney donor candidate is more likely to continue through the organ donation testing process if they talk to a living donor mentor.
This is important, this leads to more people donating kidneys which is what we all want.
Today’s guests talk to about 400 potential living kidney donors a month each! They are likely talking to more potential donors each month than anyone in the whole country, which is pretty amazing.
In this episode, we will cover the most common questions these donor mentors get asked about living kidney donation.
- What if I donate a kidney but then need a kidney later?
- What if I start the donation process, and then change my mind?
- What’s the process to be approved for donation, and how long does it take?
- How long will I need to take off work?
- Can you drink alcohol after you donate a kidney?
- Will I still be able to be active physically after I donate a kidney?
- What if I get tested, and find out I’m not a match for my intended recipient?
- Can non-directed donors meet their kidney recipient?
- What changes do I have to make to my diet post donation?
- What advice would you give me going into this, that you may have not known?
- Can I donate if not vaccinated?
- If my recipient is in another state, will I have to travel there to donate?
- How long do you stay in the hospital after you donate?
- Are there out of pocket expenses I have to worry about?
Show Links
National Kidney Donation Organization
Donor FAQ Panel: The Living Kidney Donor Experience
Patricia Graham "Go Save a Life" at Ignite Boulder 35
Kelly Schmitt on NPR “The Generosity Spectrum”
Welcome to Donor Diaries’ Season 1 closer!
In Season 1 of Donor Diaries, we covered a range of topics. We covered how to ask somebody for a kidney, the pains and history of dialysis, how to manifest a kidney, kidney chains, living donor protections, the racial disparity that exists in our current transplant system, the economic value of a kidney, kidney donor athletes who climbed Mt. Kilimanjaro, the Insider’s guide to living donation, and the exciting world of bone marrow. Phew, what a great year! In Episode 12 we revisit some highlights from Season 1 and catch up with Johnna and Mary from Episode 1, to see how Johnna is doing post-transplant, and Mary, post-donation. We also check in with the Kidney Donor Athletes who climbed Mt. Kilimanjaro, summiting on World Kidney Day!
Over 100,000 people are out there right now waiting for a lifesaving kidney transplant. At least 13 people die a day waiting for one they never get. Plain and simple- living donation solves this problem, this is a solvable problem! We have close to a dozen living donors on Donor Diaries this season, and they are all living proof that someone who donates a kidney goes on to live a totally normal and healthy life and has the same life expectancy of somebody with two kidneys. Is living donation meant for everyone? No, absolutely not! But, it is a great option for some, that saves and improves lives of everyday people like you and me. You don’t have to wait until you die to donate a kidney. You can do it now and see the ripple effect of your donation while you are still alive.
We are taking a short break to start working on Season 2 of Donor Diaries, and hope you join us for Season 2 at the end of summer 2022. Season 2 will feature more exciting transplant topics and human-interest stories about living kidney donation meant to educate and inspire!
Show Notes
Donor Diaries Facebook Page: https://www.facebook.com/DonorDiariesPodcast
CrowdSource for Life Documentary: https://www.crowdsourceforlife.com/index.php
National Kidney Donation Organization: https://www.nkdo.org/
National Organ Donation Registry: https://www.organdonor.gov/
Meet donor extraordinaire Jeramy Davies. He’s not only a bone marrow expert, but he is a two-time donor, having donated both bone marrow and a kidney to the same person. This in itself is unique to have donated twice, but so is his story. Jeramy and his recipient Kelly have not only crushed her Hodgkin's Lymphoma together, but they have created a lifetime bond through the process.
For the thousands of people diagnosed every year with life-threatening blood cancers like leukemia and lymphoma, a cure exists. They can get a bone marrow transplant and be cured of their disease. Over the past 30 years Be the Match operated by the National Marrow Donor Program, has managed the most diverse marrow registry in the world. They work every day to save lives through transplant.
Check out this incredible story of two strangers brought together by chance, who share much more with one another than kidneys and bone marrow.
Show Links
Learn more about living kidney donation (NKDO)
Meet Bobby McLaughlin, Tracey Hulick, Steve Wilson and Patty Graham from the Kidney Donor Athletes (KDA) who are in Tanzania right now getting ready to climb Mt Kilimanjaro with 18 other living kidney donors. The coolest part? They summit on March 10 which is World Kidney Day!
KDA is a community of kidney donors who have a commitment to moving their bodies for overall health and wellness. They cover the entire spectrum of athletes from the majority who do what we can when we can, to those who are more inspired to do some crazy activities!
KDA is using this climb to bring awareness to living donation, demonstrate what is possible post-donation, and to launch initiatives which inspire, support and educate people about the experience of living donation. When you donate a kidney, you do not give away your own personal strength or vitality. These athletes are living proof that you can still live a full and active life after donating a kidney. Join us for a fun and candid interview with these exceptional people!
From Bobby McLaughlin, President of KDA:
“We want everyone to know that you too can donate a kidney to help save someone's life. How amazing is it to save someone's life with something you have inside you that you don't even need!!!
You don't need to be a superstar athlete, you just need to be healthy enough to be cleared to donate, and we are living proof that after donation you can carry on living a fully adventurous life!
One day it will be so amazing to have people think about donating a kidney as many people think about donating blood.
And then our hope after that is one day, we will find a kidney transplant waitlist that reads zero.
From the rooftop of Africa to people everywhere, may you be inspired to consider creating a most wondrous ripple in our universe!"
KDA Facebook Page
One Kidney Climb Team
Kidney Donor Athletes on YouTube
Kidney Donors Live Longer
Fear Factor, Abigail Marsh
It’s illegal to buy or sell a kidney in all countries, except Iran. But imagine if there was a waitlist of people waiting to donate a kidney, versus a waitlist of people waiting to receive a lifesaving transplant. Could this be possible if the government financially compensated kidney donors? What if we not only removed the disincentives to donate, but added an incentive? What is the financial worth of a kidney, and what would donors need to be paid to ensure they are not exploited? Why is it OK to sell sperm, eggs, blood products and skin, but not kidneys?
Frank McCormick is a monetary economist who has recently turned his attention to the severe shortage of organs for transplantation. He received his Ph.D. in Economics from the University of California at Berkeley. He was a Senior Economist in the Division of International Finance at the Federal Reserve Board in Washington before becoming Vice President and Director of U.S. Economic and Financial Research at the Bank of America in San Francisco. After retiring, he taught economics at the Haas School of Business at the University of California at Berkeley, and the Graduate School of Management at the University of California at Davis.
While teaching, he became interested in the shortage of transplant kidneys, and, together with his co-authors, he has recently written six papers on the subject:
- 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
Join us for this controversial episode that walks us through Frank’s research and decide for yourself whether kidney donors should be compensated for their kidney donation! Let us know what you think on our Facebook Page!
Additional Resources
Donor Diaries Facebook Page (New!)
Iranian Kidney Exchange- L.A. Times article
National Kidney Donation Organization (info on how to donate while alive!)
Organ Donation Registry (sign up to donate your organs at death)
A transplant isn’t an event that happens exclusively to the organ recipient. It also has a major impact on the family of a recipient or organ donor and often results in complex situations and relationship dynamics.
Carol Offen and Betsy Crais are co-authors of "The Insider's Guide to Living Kidney Donation: Everything You Need to Know If You Give (or Get) the Greatest Gift.” “Our book includes much-needed nontechnical guidance for living donors and kidney patients considering or dealing with a transplant, from medical information to the impact on family relationships. Patient or donor, it’s critical to consider all the issues and be well informed. Knowledge is power–never more so than in matters of health,” explains Carol, a writer/editor in North Carolina.
Betsy, a North Carolina University professor/researcher, is a grateful kidney and liver recipient: she had a kidney transplant in 2004, and a kidney AND liver transplant the summer of 2021. Carol donated a kidney to her son when he lost kidney function stemming from a strep throat. Learn how their stories intertwine and ultimately lead to a 7-year journey to publish their book together!
The Insider’s Guide to Living Kidney Donation
“The Insider’s Guide to Living Kidney Donation” is available in a variety of formats and places:
- Amazon (Paperback or Kindle)
- BookBaby (Paperback and e-book)
- Signed copies through Flyleaf Books.
- AND ALL MAJOR RETAILERS CAN ORDER IT!
You can contact Carol and Betsy at carol.kidneydonorhelp@gmail.com. Check out Carol’s Blog, which is ranked #2 of the Top 30 Kidney Donor Blogs.
Race Matters with Dr. Dinee Simpson
Plainly stated, white people are four times more likely to receive a kidney transplant than an African-American people. And, Asian-Americans and Native Americans, have more than double the likelihood of receiving a kidney transplant than African-Americans. This is the case despite African-Americans having higher rates of diabetes and high blood pressure than other racial cohorts. These are the health conditions that put people at further risk for organ failures.
According to UNOS, once a patient is on the waitlist, the system policy that we have assures equity. The problem is everything before that. A good nephrologist should be thinking about transplantation for any patient who has progressive end-stage renal disease. That doesn’t happen as much with African Americans and Hispanics and probably poor people. But it’s clear that African Americans and Hispanics are not referred or preemptive transplants as much as others.
Disparities in access to renal transplantation between black people and white people have been extensively documented, and show that black people have significantly poorer access to transplant. This is a major problem that many institutions are taking an action to correct.
Dr. Dinee Simpson, is one of nine Black female transplant surgeons in the United States. She’s committed to breaking down barriers to transplant care in the African American community through access to education, resources and world-class transplant care. She founded the The Northwestern Medicine African American Transplant Access Program (AATAP), to address disparity in access to transplantation experienced by the Black community.
AATAP is a program built for the Black community, based on feedback and conversations with Black community members about the challenges of navigating a complex diagnosis and the healthcare system. The four pillars of the program address patient distrust of health care, cultural competency, health literacy, and psychosocial support.
Show Links
African American Transplant Access Program
"Chicago transplant surgeon aims to increase live-saving options for African American patients" abc7chicago.com March 2, 2021.
"She's Rebuilding Trust One Patient at a Time" March 2, 2021.
Episode 6 features Laurie Lee’s family transplant story. Meet Laurie’s dad, Dan Dickinson, who is not only a liver transplant recipient, but Laurie’s partner in a decade’s worth of transplant initiatives. This dynamic duo will interview each other to bring you a touching transplant story that started over 20 years ago when Dan passed out on a plane! Find out how a liver transplant for Dan ultimately lead to a kidney donation for Laurie!
Dan Dickinson is founder and serves as Chairman of Transplant Village, bringing his years of business acumen as well as his personal experience as a liver transplant recipient to the organization. By helping Northwestern’s Comprehensive Transplant Center (CTC) raise the money that it needs to continue its research and expand patient care, he has helped create a system of success. As Chairman, Dickinson leads the NMTAC in achieving its goals: raising funds to support the CTC’s initiatives and developing lasting relationships with the group’s donor base to establish a culture of philanthropy within the CTC community.
Tune in to hear Dan and Laurie’s story today. Learn about their organization, Transplant Village, and learn about Laurie’s current efforts to produce a PBS Documentary called CrowdSource for Life.
This episode is lovingly dedicated to Dan’s deceased liver donor, and Laurie’s kidney recipient. Both are strangers, and both play an important role in this family story about giving and receiving.
“Love between strangers takes only a few seconds and can last a whole life.” – Simon Van Booy
Show Links:
The Truth About Organ Donation | AMA 07 (opening clip)
Dan’s Liver Blog
Transplant Village
Transplant Village’s Kidney Champion Program
Organ Donor Registry (to sign up as a deceased donor)
CrowdSource for Life Teaser Trailer
CrowdSource for Life Sponsorship Opportunities
Episode 5 comes to you from a giant porch swing on Martha’s Vineyard, where host Laurie Lee is spending the weekend with over a dozen living kidney donors and living kidney donor advocates from the National Kidney Donation Organization.
Meet Cody Maynard, Steve Wilson, and Terri Thede, all non-directed kidney donors from different parts of the country for a casual conversation under the vineyard stars. Find out what happens when somebody donates a kidney without an intended recipient. Do they get to meet the recipient? Do they want to meet the recipient? And did living donation positively impact their lives? If so, what have they gained? Learn this and more on “Real Stories from the Vineyard.”
Episode Links:
"Why Donate Our Kidney to a Stranger" by Elaine Perlman
National Kidney Donation Organization
Quality of Life After Donating
Join Laurie Lee and Ned Brooks as they discuss kidney chains, lightning strikes, Freakonomics, and kidney vouchers!
Ned Brooks is a retired businessman who donated his kidney as a non-directed donor in 2015, at the age of 65, for the purpose of starting a kidney chain of three transplants. His kidney went to a young mother in Colorado. Ned was so taken by the experience that he started National Kidney Donation Organization (NKDO) for the purpose of helping prospective living donors to make their donation in as effective a manner as possible and with the most protections available in the industry.
NKDO now has over 30 donors and recipients who mentor both donor candidates and patients seeking a donor. NKDO works very closely with the National Kidney Registry (NKR) because the NKR is affiliated with about 100 transplant centers across the country and runs Donor Shield, a suite of protections for living donors.
Ned is CEO of NKDO and an ongoing student of transplant who enjoys mentoring and educating people on the need for living organ donors.
Episode Links
National Kidney Donation Organization (NKDO)
National Kidney Registry (NKR)
Ned Brooks Ted Talk
Make Me a Match (Freakonomics Radio Episode)
Ask Not what your Podcast Can Do for You (Freakonomics Radio Episode)
Donor Diaries
In most cases, when someone steps forward as a living donor, nobody actually asks them to donate a kidney. Usually, the donor hears the story of someone needing a kidney and makes the decision to donate without being asked.
The Living Kidney Donors Network (LKDN) is a non-profit 501(c)3 organization established in 2007 by Harvey Mysel whose primary mission is to educate people in need of a kidney transplant about living kidney donation and help them communicate their need to family members and friends. LKDN also has a program that educates the public about the need for living kidney donors.
Harvey is a 2-time kidney transplant recipient. After proactively managing an inherited kidney condition, PKD (Polycystic Kidney Disease) for over 20 years he had his first kidney transplant in February 2007. He was fortunate that his wife Amy was a compatible donor.
Harvey contracted a virus, (BK Virus,) 2 years after his transplant and after years of battling this virus, in August 2012 he had his second kidney transplant. Harvey and his donor, Stephen Liegghio, who was introduced to Harvey by an advocate, were involved in a 3-way kidney paired exchange.
Most kidney donors donate to someone they know and patients need to first have the knowledge about living kidney transplants and learn how to develop their kidney campaign so they could be effective in communicating their need. The FREE online program Having Your Donor Find YOU! does just that.
In addition to the work he does at the LKDN, Harvey is a tri-athlete, competing in a triathlon 5 months after his first transplant. He is a 3-time Gold Medal winner and Silver medalist in the Transplant Games. Harvey is an accomplished bicycle rider, tennis player, platform tennis player, bowler, hiker and rock climber.
Episode Links
Donor Diaries
Living Kidney Donors Network
Northwestern Kidney Champion Program
National Kidney Donor Organization
Johns Hopkins COVID/kidney Recipient Study
Who shall live?
Meet senior transplant coordinator Doug Penrod. Each of our podcasts feature either a living donor, or a transplant expert. Doug is both an expert and a living donor which makes him the first Donor Diaries Double Dipper! Join Doug and Laurie as they discuss the controversial aspects of dialysis in America and what is being done to ensure that dialysis patients understand their option to get a kidney transplant. Find out what a “God Committee” is and learn how they determined who would live or die in the early years of dialysis machines. Find out what compelled Doug to become a living kidney donor himself after over 20 years of working with organ donors and recipients.
Episode Links
Donor Diaries
Organ Donor Registry (deceased donation)
National Kidney Donor Organization (NKDO) (living donation)
Who Shall Live? (God Committees)
Dialysis: Last Week Tonight with John Oliver
How do you ask somebody for a kidney?
Meet Johnna, a Chicago area woman with Polycystic Kidney Disease (PKD). Johnna is in stage 5 kidney failure and needs a kidney transplant. She can wait 5-7 years for a deceased donor kidney to become available, or she can find a friend or family member to become a living kidney donor on her behalf, and get a new kidney right now. Find out what happens when Johnna’s longtime friend Mary decides to step forward to be tested as a match!
Episode Links
Johnna Needs a Kidney
PKD Foundation
Donor Diaries
Organ Donor Registry (deceased donation)
National Kidney Donor Organization (NKDO) (living donation)
Donor Diaries is a podcast about the beauty and messiness of living organ donation. Get ready for some amazing stories about what happens when people decide to share their organs with other people, when people chose to share life. The sharing of kidneys and other organs is an incredibly fascinating topic that teaches a lot about kindness, love, and life!
There are over 100,000 people on the kidney transplant waitlist today, and sadly about 13 people die each day waiting for a kidney that they never receive. One in three Americans are at risk for developing chronic kidney disease and one in nine already have kidney disease. Most don’t even know it.
Donor Diaries shares unfiltered stories of kidney donation through the voices of living donors and straight talk from transplant experts who are committed to bringing the conversation of living organ donation to the forefront of society, so patients no longer have to die or suffer while waiting for a transplant.
Episode Links
Donor Diaries
Organ Donor Registry (deceased donation)
National Kidney Donor Organization (NKDO) (living donation)
Discovering the Unexpected Rewards of Donating a Kidney to a Stranger | EP 25
39:10
Nutcracker Kidneys with LJ the Medium | EP 24
28:00
Tax Credits Can Save Lives | EP 23
30:51
Diane Lee Reporting Live with 1 Kidney | EP 22
32:35
Transcending Borders: International Kidney Exchange with Dr. Satish Nadig | EP 21
38:11
Coffee and Kidneys with Al Roth | EP 20
53:35
The Bionic Man | EP 19
32:57
Effective Altruism and Kidney Donation With Dylan Matthews | EP 18
27:26
Altruists and Psychopaths with Abby Marsh | Ep 16
34:27
Donor Disincentives, with Martha Gershun | EP 15
29:52
A Double Donor’s Story of Loss and Redemption | EP 14
36:35
Can I Drink After Donation? And Other Donor FAQs | EP 13
21:39
Commit, Then Figure It Out | EP 12
22:20
“Anam Cara” The Soul Friends | EP 11
31:15
The One Kidney Climb | EP 10
31:13
An Economists Perspective on the Value of a Kidney | EP 9
30:20
Insider’s Guide to Living Kidney Donation | EP 8
28:02
Race Matters with Dr. Dinee Simpson | EP 7
31:19
The Dan & Laurie Episode | EP 6
30:38
Real Stories from the Vineyard | EP 5
25:49
Leverage | EP 4
27:54
Kidney Manifesting | EP 3
26:16
Who Shall Live? | EP 2
25:48
How Do You Ask Somebody For a Kidney? | EP 1
25:48
Welcome to Donor Diaries | EP 0
8:19