Donor Diaries

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 NotesDonor Diaries Facebook Page:  https://www.facebook.com/DonorDiariesPodcastCrowdSource for Life Documentary:  https://www.crowdsourceforlife.com/index.phpNational 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 LinksJoin the Bone Marrow RegistryLearn 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 PageOne Kidney Climb TeamKidney Donor Athletes on YouTubeKidney Donors Live LongerFear 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 DonorsWould Government Compensation of Living Kidney Donors Exploit the Poor? An Empirical AnalysisThe Terrible Toll of the Kidney ShortageRemoving Disincentives to Kidney Donation: A Quantitative AnalysisReducing 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 DonorsJoin 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 WebsiteDonor Diaries Facebook Page (New!)Iranian Kidney Exchange- L.A. Times articleNational 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 SimpsonPlainly 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 LinksAfrican 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 BooyShow Links:The Truth About Organ Donation | AMA 07 (opening clip)Dan's Liver BlogTransplant VillageTransplant Village's Kidney Champion ProgramOrgan Donor Registry (to sign up as a deceased donor)CrowdSource for Life Teaser TrailerCrowdSource 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 PerlmanNational Kidney Donation OrganizationQuality 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 LinksNational Kidney Donation Organization (NKDO)National Kidney Registry (NKR)Ned Brooks Ted TalkMake 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 LinksDonor DiariesLiving Kidney Donors NetworkNorthwestern Kidney Champion ProgramNational Kidney Donor OrganizationJohns 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 LinksDonor DiariesOrgan 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 LinksJohnna Needs a KidneyPKD FoundationDonor DiariesOrgan 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 LinksDonor DiariesOrgan Donor Registry (deceased donation)National Kidney Donor Organization (NKDO) (living donation)