By Laurie Lee
The podcast currently has 8 episodes available.
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)
The podcast currently has 8 episodes available.