Donor Diaries

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

Donor Diaries Website
Donor Diaries on Facebook
Crowd Source for Life

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 Connect Mentor Program

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”

Kelly Schmitt’s Story

Donor Diaries Website
Donor Diaries on Facebook
Crowd Source for Life

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/

Donor Diaries Website
Donor Diaries on Facebook
Crowd Source for Life

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

Join the Bone Marrow Registry

Learn more about living kidney donation (NKDO)

Donor Diaries Website
Donor Diaries on Facebook
Crowd Source for Life

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

Donor Diaries Website
Donor Diaries on Facebook
Crowd Source for Life

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 Website

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)

Donor Diaries Website
Donor Diaries on Facebook
Crowd Source for Life

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 [email protected].  Check out Carol’s Blog, which is ranked #2 of the Top 30 Kidney Donor Blogs.

Donor Diaries Website
Donor Diaries on Facebook
Crowd Source for Life

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.

Donor Diaries Website
Donor Diaries on Facebook
Crowd Source for Life

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

Donor Diaries Website
Donor Diaries on Facebook
Crowd Source for Life

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

Donor Diaries Website
Donor Diaries on Facebook
Crowd Source for Life