Kidney Transplant Conversations

Kidney Transplant Conversations features diverse voices and experiences of donating, receiving, and caring for this gift of life. Over the coming months each new episode will feature interviews with patients, caregivers, advocates, donors, healthcare providers, and community leaders.

At its highest level, our podcast series focuses on quality healthcare delivery, highlighting the innovative approaches kidney transplant recipients and providers are applying to improve care. Along the way, we’ll explore all the stages of the kidney transplant journey and invite our guests to share their experiences and insights. We’ll also look at things like health disparities in renal transplant, identifying where and why some groups don’t do as well when compared to others, and discuss what we can do to close the gap. This will include explorations of inclusion, diversity, equity and access (also known by the acronym IDEA), which are all subjects central to the purpose of this podcast.

We invite you to subscribe and let Kidney Transplant Conversations keep you connected, informed and inspired with a constant flow of new thoughts and ideas.

Send suggestions for guests and topics to: rolf.taylor@projectadvocacy.com

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.

 

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 

 

FULL TRANSCRIPT   ⬇️

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)  ⬇️

We talk with kidney transplant surgeon Dr. Robert Montgomery about his own experience of receiving a heart transplant three years ago. This led him to a new understanding of the challenging “new normal” for patients after a transplant, which involves multiple medications and many new responsibilities. We also discuss the evolving impacts of the ongoing COVID-19 pandemic on an estimated 10 million people with compromised immune systems. Dr. Montgomery talks about his health equity leadership role at NYC Langone, where intentional policies are helping to foster diverse hiring and retention of health workers from underrepresented groups. He also shares some of the ways that the institute is improving health outcomes in transplantation, through research into disparities and understanding of their root causes, particularly social determinants. With podcast host Rolf Taylor.

About Dr. Montgomery: https://nyulangone.org/news/life-death-life-death-life-dr-robert-montgomery 

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 

DOWNLOAD TRANSCRIPT (PDF) ⬇️

We are joined by history maker Dr. Velma Scantlebury, who became the first Black female transplant surgeon in the US in 1989. In a wide-ranging discussion we ask whether all the current talk about health equity is resulting in real action, and we explore several current examples of intentional change. Firstly, the “Boldly Against Racism” Campaign at the American Society of Transplant Surgeons (ASTS); secondly, the updated Hippocratic Oath at Columbia University Vagelos College of Physicians and Surgeons, clearly centering health equity, diversity, and inclusion; and thirdly the recent recommendations affecting the way that kidney function calculations (eGFR) are made. Dr. Scantlebury also shares her concerns that patients with fewer resources are being disadvantaged by the burden of appointments required in preparing for a transplant and this may extend how long patients are kept on dialysis, acting as a potential barrier to transplantation.

Velma P. Scantlebury, M.D, FACS, recently retired from Christiana Care’s Kidney Transplant Program where she served as the Associate Director, and Director of Outpatient Clinics. She currently holds the position of Professor of Surgery at Texas Christian University (TCU) and University of North Texas Health Science Center (UNTHSC) and Medical School, in Forth Worth Texas. Dr. Scantlebury also serves as a medical advisor to various organizations and healthcare professionals. She has been named to both the “Best Doctors in America” and “Top Doctors in America” lists multiple times.

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

 

Resources and links

About Dr. Velma Scantlebury: https://vpscantleburymd.com/  

ASTS Boldly Against Racism Campaign: https://asts.org/about-asts/boldly-against-racism-campaign#.YZKxAL3MLa4

Columbia University Vagelos College of Physicians and Surgeons Hippocratic Oath: https://www.youtube.com/watch?v=AujwxJNZtp8

Time to Eliminate Health Care Disparities in the Estimation of Kidney Function: https://www.nejm.org/doi/full/10.1056/NEJMe2114918

 

DOWNLOAD TRANSCRIPT (PDF)  ⬇️

Not everyone lives close to a hospital. In this podcast we discuss two potential challenges in managing chronic kidney disease and kidney transplants: the first is care when you live a long distance from specialist care, and the second is potential financial barriers. Our guest in this episode, Dr. Silas Prescod Norman, tells us about some very real ways that his hospital center has worked proactively to address both barriers, and with tangible results.
 
Silas Prescod Norman, M.D., M.P.H is a nephrologist at the University of Michigan, working in the transplant program since 2002, and he currently serves as the co-Medical Director for kidney and pancreas transplant and Medical Director of the Transplant Multidisciplinary Ambulatory Clinics, which see more than 18,000 patient visits annually. Dr. Norman has made numerous contributions to the transplant program including the development of outreach satellite clinics to allow patients greater access to transplant opportunities, the focus of today’s episode.  
 
Dr. Norman also serves with and volunteers for a number of organizations related to kidney transplantation, including the National Kidney Foundation of Michigan, The American Kidney Fund, and MOTTEP, the Minority Organ Tissue Transplant Education Program and more recently became an advisor to this podcast, representing the American Society of Transplantation.
 

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, 2021 

 

DOWNLOAD TRANSCRIPT (PDF) ⬇️

In this episode we meet Dr. Joyce Trompeta, A Nurse Practitioner (NP) specializing in transplantation, and an Associate Professor in the school of medicine, at the University of California, San Francisco where she conducts outcome research in the department of surgery.

Dr. Trompeta discusses several areas of interest, including her concerns about disparities impacting Asian American, Pacific Islander and Latino populations; her work in Hawaii; how younger Latinos with kidney disease are facing unique challenges relating to immigration; and her travels to Japan, where stigma and cultural beliefs have limited organ transplantation, but where the younger generations are now leading change with a little help from Kumamon, Japan’s most popular bear. 

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, 2021 

 

DOWNLOAD TRANSCRIPT (PDF)  ⬇️

 

How the UNC Chapel Hill Latino Transplant Clinic is increasing access through culturally competent care. UNC Chapel Hill Latino Transplant Clinic, Part 1

Featuring Transplant Social Worker Daniela Matz and clinic founder Dr. Pablo Serrano.

In our last episode we met José and Xiomara Flores and heard about their five-year journey from kidney disease diagnosis to their live donor transplant, which took place at the University of North Carolina Transplant Latino Transplant Clinic. The clinic is the culmination of a very intentional vision, a strategic decision to integrate a Latino-focused Transplant Clinic within the Abdominal Transplant Division at UNC Chapel Hill. Since being established in 2018, they have gone on to demonstrate how workforce diversity and cultural competency go hand in hand in the delivery of quality care.

In today’s episode, transplant social worker Daniela Matz and clinic founder Dr. Pablo Serrano look back on Jose and Xiomara’s story, share with us insights into how the clinic works, and how they have been able to reduce renal transplant disparities.

All views and opinions expressed in this podcast reflect those of the participants.

We thank the participants and advisors who helped create this podcast, and our underwriter, Veloxis Pharmaceuticals.

© Project Advocacy, 2021 

Resources relevant to Episodes 2 & 3 of Kidney Transplant Conversations:

Welcome to Infórmate            

El objetivo de ésta página bilingüe es educar a los hispanos / latinos acerca de la donación de riñón en vida.

The goal of this bilingual page is to educate Hispanics / Latinos about living kidney donation.

http://informate.org/

National Kidney Foundation:    

La información más importante sobre la enfermedad renal.

Provides lots of great information about kidney disease from prevention to transplant, including living donation.

https://www.kidney.org/espanol 

American Kidney Fund             

Nuestra misión es ayudar a las personas a combatir la enfermedad de los riñones y vivir una vida más sana.

Information plus financial assistance opportunities.

https://www.kidneyfund.org/en-espanol/ 

National Foundation for Transplants    

Cómo eliminar las barreras financieras para los donantes vivos.

Removing financial barriers to transplantation. 

https://transplants.org/resources/

Children’s Organ Transplant Association: 

Recaudación de fondos y apoyo para niños y adultos jóvenes con poliquistosis renal.

Fundraising and support for children and young adults with polycystic kidney disease.

www.cota.org 

 

DOWNLOAD TRANSCRIPT (PDF)  ⬇️

In this episode we’ll hear from José a patient, and Xiomara, his wife and donor, as they describe the challenges they experienced in their quest for a kidney transplant, and the joy they have felt since then. We’ll also hear from transplant social worker Daniela Matz, who assisted them. 

The Census Bureau estimates that there are over 60 million Hispanics and Latinos living in the United States, and the Latinx population is the fastest growing minority. As many as 40 million are speaking Spanish as their first language. Although Hispanics and Latinos are more likely to experience kidney failure compared to other Americans, they are less likely to access kidney transplant as a solution, the resulting disparity means more years on dialysis, reduced quality of life, reduced life expectancy, and increased healthcare expenses. 

Part of the problem is the waitlist for a transplant, there simply aren’t enough organs to go around. If a living donor can be found, then that is a gamechanger. But here we find another disparity – because the process of live donor kidney transplantation can often elude our minority populations.

To address some of these issues, in 2018 Dr. Pablo Serrano established the Latino Transplant Clinic at the University of North Carolina (UNC) Division of Abdominal Transplantation, in Chapel Hill, NC, with the aim of providing culturally competent and culturally sensitive care. 

August is National Minority Donor Awareness Month (NMDAM). 

Founded in 1996 by the National Minority Organ Tissue Transplant Education Program (MOTTEP) to bring heightened awareness to donation and transplantation in multicultural communities. For more information and shareable resources please visit: 
https://www.donatelife.net/nmdam/

All views and opinions expressed in this podcast reflect those of the participants.

We thank the participants and advisors who helped create this podcast, and our underwriter, Veloxis Pharmaceuticals.

© Project Advocacy, 2021

Resources relevant to Episodes 2 of Kidney Transplant Conversations

Welcome to Infórmate  
El objetivo de ésta página bilingüe es educar a los hispanos / latinos acerca de la donación de riñón en vida. 
The goal of this bilingual page is to educate Hispanics / Latinos about living kidney donation.
http://informate.org/  

National Kidney Foundation:  
La información más importante sobre la enfermedad renal. 
Provides lots of great information about kidney disease from prevention to transplant, including living donation. 
https://www.kidney.org/espanol  

American Kidney Fund  
Nuestra misión es ayudar a las personas a combatir la enfermedad de los riñones y vivir una vida más sana. 
Information plus financial assistance opportunities. 
https://www.kidneyfund.org/en-espanol/  

National Foundation for Transplants 
Cómo eliminar las barreras financieras para los donantes vivos. 
Removing financial barriers to transplantation.  
https://transplants.org/resources/ 

Children’s Organ Transplant Association: 
Recaudación de fondos y apoyo para niños y adultos jóvenes con poliquistosis renal.
Fundraising and support for children and young adults with polycystic kidney disease. 
www.cota.org  

 

 

DOWNLOAD TRANSCRIPT (PDF) ⬇️ 

 

 

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