Kidney Transplant Conversations

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) ⬇️

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) ⬇️

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) ⬇️

Episode 1: Impact of Pandemic, & Meeting People Where They Are Welcome to Kidney Transplant Conversations. The COVID-19 pandemic has everyone asking a lot of questions, especially transplant recipients, and those waiting for a transplant. In this episode we discuss the impact of the pandemic, talk about masks and vaccines, and how the pandemic is impacting people with immunosuppression. To explore these subjects, we welcome two guests to the podcast. Firstly, living donor recipient Risa Simon, who will share insights from the transplant patient’s point of view, and then Daryle Blackstock, PA-C, who will talk about the importance of meeting people where they are. 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 Links to resources mentioned in this episode: TransplantFirst Academy ASTS Patient Resources AST Patient Resources NKF Patient Resources AAKP Patient Resources Kinsey's Kidney Adventure by Nadine Morsi Medical Apartheid by Harriet Washington DOWNLOAD TRANSCRIPT (PDF) ⬇️