Kidney Transplant Conversations Project Advocacy

Mike was just seven years old when he lost his father to kidney disease, and many years later he learned that he was at an advanced stage of the inherited condition called polycystic kidney disease (PKD), and his kidneys were slowly failing. 2019 was a very challenging year and Mike experienced multiple medical issues. He knew he needed a transplant, and that the waitlist was long and with no guarantees. 
Mike started researching how to go about receiving a kidney from a living donor, and he came across resources from “The Big Ask, The Big Give,” a program of The National Kidney Foundation. Asking for a kidney can be awkward, and using social media is a whole different world for someone who never used Facebook, so Mike needed a champion. In this episode he shares how before he asked for a kidney, he had to ask for help, and navigate the pandemic at the same time. 
Meanwhile, Mike’s niece Andrea had never thought very much about donating an organ until she heard Uncle Mike’s story. In the second part of this episode, Andrea shares with us how she came to the realization that she could do something significant to help. She also discusses how gifting a kidney has opened up a new and unexpected richness in her life, including her involvement with Kidney Donor Athletes, and a recent trip to Mount Kilimanjaro. 
FULL TRANSCRIPT ⬇
With host and series producer Rolf Taylor. 
Resources mentioned during this episode: 
The Big Ask, The Big Give, NKF   www.kidney.org/transplantation/livingdonors 
Kidney Donor Athletes    www.kidneydonorathlete.org/ 
Kidney Transplant Conversations is underwritten by Veloxis Pharmaceuticals, Inc. All views and opinions expressed in the podcast reflect those of the participants and do not necessarily represent the views and opinions of Veloxis Pharmaceuticals, Inc.
Excerpts
“I’m not very media savvy, let’s put it that way. I don’t do any social things on the internet because I’m an old guy. They said find someone to be your champion. My daughter-in-law volunteered for this project.”– Mike
“What happened to me was a miracle because if you look at kidney transplants for people my age, it’s really low, when I got my transplant, I was 69.” – Mike
“The next words she said were “I’m approved as a donor for Uncle Mike. It just came out of the blue! We had no idea that she went through all these tests. She didn’t want anyone to know in case she could not help.” – Mike
“It has been one of the best things that I have done in my life. I’m just so grateful for the doctors and for science and for all the support that I was able to find. I was so blessed to be able to give this gift.” – Andrea 
© Project Advocacy, 2022 - 2023

In the previous episode we heard Darryl’s story, how he needed a kidney transplant because of kidney cancer. This week we meet Jim, who responded to “The Big Ask,” and donated a kidney to his close friend Darryl. Jim shares with us his side of the story, explaining why doing this for his “brother” was so important to him, and he describes his overall experience of making “The Big Give.”
And Dr. Adam Bregman joins us to talk about his experience with kidney transplant patients using resources from programs such as “The Big Ask, The Big Give” to help find their own living donor. He also explains how a kidney from a living donor tends to last longer. We also explore the subject of health disparities in kidney disease and discuss some of the root causes.
FULL TRANSCRIPT ⬇
With host and series producer Rolf Taylor.
Resources mentioned during this episode:
The Big Ask, The Big Give, National Kidney Foundation                www.kidney.org/transplantation/livingdonors
Kidney Transplant Conversations is underwritten by Veloxis Pharmaceuticals, Inc. All views and opinions expressed in the podcast reflect those of the participants and do not necessarily represent the views and opinions of Veloxis Pharmaceuticals, Inc.
© Project Advocacy, 2022-2023 

In our last episode, the first of several episodes celebrating National Donate Life Month, we sat down with Jennifer Martin from the National Kidney Foundation and learned about “The Big Ask, The Big Give”, a program dedicated to helping people with chronic kidney disease find their living kidney donor.
In this episode we meet military veteran Darryl Shaw, a kidney cancer survivor who also served multiple tours of duty. Darryl’s family members helped champion a successful campaign to raise funds for a kidney transplant, funding that helped his eventual living donor complete the initial compatibility tests. Darryl now volunteers as a mentor with programs such as “The Big Ask, The Big Give” from NKF, sharing his experiences and giving encouragement. He can offer perspectives from the point of view of ESKD patient who received a kidney from a friend and colleague, as well as being someone who opted for home dialysis and overcame many medical challenges. Darryl is now studying for his master’s degree in Pastoral Counseling, and he plans to continue in service to the kidney patient community.
With host and series producer Rolf Taylor.
FULL TRANSCRIPT ⬇️ 
Resources mentioned during the podcast:
Every April is National Donate Life month  www.donatelife.net/ndlm/
The Big Ask, The Big Give, NKF  www.kidney.org/transplantation/livingdonors
The National Foundation for Transplants  www.transplants.org
Mighty Cause  www.mightycause.org
We thank the participants and advisors who help make Kidney Transplant Conversations possible.
Kidney Transplant Conversations is underwritten by Veloxis Pharmaceuticals, Inc. All views and opinions expressed in the podcast reflect those of the participants and do not necessarily represent the views and opinions of Veloxis Pharmaceuticals, Inc.
© Project Advocacy, 2022 

Every year, April is National Donate Life Month. This is an annual time for increasing awareness of the importance of registering as an organ donor or saving a life by being a living donor. And for kidney transplants, living donation offers the best possible outcomes for recipients.  
But asking someone to give a kidney can be daunting, and the process can be a challenge. For the next episodes of Kidney Transplant Conversations, we will be hearing from support organizations such as the National Kidney Foundation (NKF), the National Living Donor Assistance Center (NLDAC), and TransplantFirst Academy (TFA) about programs supporting living donation. We’ll also talk with healthcare providers about their professional perspectives, and hear from living donor recipients about their experiences.
This week, Jennifer Martin from the National Kidney Foundation tells us all about their program “The Big Ask, The Big Give”, a comprehensive resource which includes webinars and workshops, and makes mentors available by phone. the National Kidney Foundation website link is www.kidney.org/transplantation/livingdonors and you can also call them on 1.855.653.2273.
With series producer and host Rolf Taylor. 
Other resources mentioned in this episode include:
National Donate Life Month
www.donatelife.net/ndlm/;
The Johns Hopkins Living Donor Champion Program
https://www.hopkinsmedicine.org/transplant/patient_information/live-donor-program.html;
National Living Donor Assistance Center
www.livingdonorassistance.org/. 
Kidney Transplant Conversations is underwritten by Veloxis Pharmaceuticals, Inc. All views and opinions expressed in the podcast reflect those of the participants and do not necessarily represent the views and opinions of Veloxis Pharmaceuticals, Inc.
© Project Advocacy, 2022 
 
LINK TO TRANSCRIPT (PDF) ⬇️
 
 

Our first guest on this episode is counseling psychologist Dr. Camilla Nonterah, who discusses the importance of understanding and supporting transplant patients from both biological and psychosocial perspectives. She also reflects on the impact COVID is having on the mental health of transplant patients. During this episode we also hear from Barbara, John and Ed from the Florida Organ Transplant Association, who share with us their observations and concerns about the challenges of living alongside COVID as a transplant recipient.
Dr. Nonterah is Assistant Professor of Health Psychology at the University of Richmond in Virginia. A counseling psychologist by training, Dr. Nonterah is an expert in the psychosocial aspects of chronic illness by examining health disparities and health equity, health behaviors, treatment seeking, and mental health associated with end-stage organ disease and solid organ transplantation. She is also a proponent of positive psychology. 
The Florida Organ Transplant Association's mission is to support the transplant community through forums to provide information and financial support for patients, caregivers and organ donor families, educate the community at large on the importance of organ donation, and fund transplant research.
With podcast producer and host Rolf Taylor.
About Dr. Camilla Nonterah: https://psychology.richmond.edu/faculty/cnontera/
About Florida Organ Transplant Organization: https://www.floridaorgantransplant.org/
We thank the participants and advisors, and our underwriters, who helped create this podcast. 
Kidney Transplant Conversations is underwritten by Veloxis Pharmaceuticals, Inc. All views and opinions expressed in the podcast reflect those of the participants and do not necessarily represent the views and opinions of Veloxis Pharmaceuticals, Inc.
© Project Advocacy, 2022 
LINK TO TRANSCRIPT (PDF) ⬇️

20 years ago, a young Benji Lafitte had his promising basketball career cut short by kidney failure, and he would go on to depend on dialysis for the next two decades. After almost giving up on the transplant process, an old basketball rival persuaded Benji to engage again with a transplant center.
Benji joins us on this episode of Kidney Transplant Conversations to share his long journey to transplant with us, and he also remembers with gratitude his friend and mentor Chris Osbourne, the individual who had helped him try for a transplant again. Chris was another kidney transplant recipient, but he hesitated to get vaccinated, and his life was recently lost to the COVID-19 pandemic. We discuss some of the misinformation that can contribute to vaccination decisions, and Benji highlights the importance of never giving up on yourself and your health.
With series producer and host Rolf Taylor. 
This episode of Kidney Transplant Conversations is dedicated to the memory of Chris Osbourne.
Kidney Transplant Conversations is underwritten by Veloxis Pharmaceuticals, Inc. All views and opinions expressed in the podcast reflect those of the participants and do not necessarily represent the views and opinions of Veloxis Pharmaceuticals, Inc.
© Project Advocacy, 2022 
LINK TO TRANSCRIPT (PDF)  ⬇️