Kidney Transplant Conversations ~ Patient, Donor & Caregiver Edition – Details, episodes & analysis

As our understanding of APOL1-Mediated Kidney Disease (AMKD) grows, so does the need for greater awareness. National APOL1-Mediated Kidney Disease (AMKD) Awareness Day is observed annually on the last Tuesday of April. 

In this episode of Kidney Transplant Conversations, we share an inspiring story of resilience, advocacy, and hope. Sharron Rouse opens up about her personal journey with kidney disease — a journey that began with a diagnosis of lupus nephritis, only to later discover she was actually battling FSGS (focal segmental glomerulosclerosis), a condition sometimes linked to the APOL1 gene variant that is found in around 35% of people of African ancestry. 

In a heartfelt conversation with host Rolf Taylor, Sharron discusses the shock of her diagnosis, the challenges of navigating unclear answers, and the life-changing gift of a kidney transplant from her sister.

As the founder of Kindness for Kidneys International, Sharron is now a tireless advocate, raising awareness about the genetic factors influencing kidney health. She emphasizes the importance of early diagnosis, the critical role of research into APOL1-related kidney disease, and the urgent need for greater awareness in communities of African descent.

Tune in to hear how Sharron’s story offers hope to kidney warriors everywhere, highlights the life-saving potential of genetic testing, and makes a powerful case for early intervention. This episode is both inspiring and a call to action for greater education, early screening, and community empowerment.

Kindness for Kidneys Website: https://www.kindnessforkidneys.org/

APOL1-Mediated Kidney Disease (AMKD) Awareness Day: https://www.kidneyfund.org/amkd-day-proclamation 

Should I get tested for the APOL1 gene? https://www.kidney.org/kidney-topics/apol1-mediated-kidney-disease-amkd 

(c) Project Advocacy 2025

In part 2 of our discussions with Liz, Grace & Shelley, we invite our guests to reflect on six specific questions about their experiences of giving and receiving, and the world of kidney donation. 

   1. One thing that has been most wonderful about this experience     2. One thing that has been most surprising    3. One thing that has been really difficult    4. One way that you have changed personally because of this experience    5. One thing you wish you could change (magic wand question)     6. One call to action for listeners.

We delve into the remarkable stories of how Shelley, Liz, and Grace were connected through the life-saving act of kidney donation. Shelley, a special education teacher in Portland, Oregon, shares her journey of seamlessly becoming a donor, while Liz, a transplant recipient from Chicago, recounts her renewed zest for life and the accountability inspired by her "kidney sisters." Grace, a hospice nurse from the small island of Kauai, reflects on the joy and challenges of living far from her recipient and the emotional impact of reading a heartfelt letter of gratitude.

Through candid conversations, these women discuss the surprising ease of the donation process, the profound relationships formed, and the ripple effects of their decisions. They also highlight the struggles of shifting societal perceptions of organ donation and emphasize the importance of becoming advocates for this life-changing cause. Tune in to hear about their transformative experiences and the shared mission of encouraging others to consider donation, making a lasting impact on the lives of many in need.

(c) Project Advocacy 2024 

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 2

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)  ⬇️