Hot Topics in Kidney Health

You may know Tony and Grammy Award winner J. Harrison Ghee from their Broadway performances, like Some Like It Hot. Now, they’re using their platform to talk about what’s been happening behind the curtain—their journey with kidney disease and their search for a living kidney donor. Today, we’re talking about listening to your body, asking for help, and why Ghee hopes their story inspires more people to learn about living kidney donation. In this episode we heard from: J. Harrison Ghee is an award-winning American actor, singer, and dancer best known for their work on Broadway. They made their Broadway debut as Lola in Kinky Boots and later originated the role of Jerry/Daphne in Some Like It Hot, earning a 2023 Tony Award for Best Actor in a Musical. Ghee, who is nonbinary and uses he/she/they pronouns, became one of the first openly nonbinary Tony Award winners. They have also appeared in Mrs. Doubtfire, Hadestown, and Once Upon a Mattress, among other productions. In 2022, Ghee was diagnosed with kidney disease and is currently on the waiting list for a kidney transplant.   Additional Resources Your Genes and Your Kidney Health Genetics and Kidney Health NKF Peers Information on Transplantation   Do you have comments, questions, or suggestions? Email us at [email protected]. Also, make sure to rate and review us wherever you listen to podcasts.

The transplant system in America is evolving. And you deserve to know what that means. Today, we unpack the Securing the U.S. Organ Procurement and Transplantation Network (OPTN) Act with experts Miriam Godwin and Jullie Hoggan. Learn why this legislation was introduced, how it could improve the organ transplant system, and what it means for people waiting for or living with a transplant. In this episode we heard from:  Miriam Godwin is a kidney donor and Vice President of Health Policy and Clinical Outcomes at the National Kidney Foundation. She previously led transformative initiatives at CMS, including the ESRD Treatment Choices Model, and supported groundbreaking programs like Kidney Care Choices. With a strong foundation in health policy, clinical trials, and drug development, Miriam has dedicated her career to advancing kidney care and increasing access to transplants. She holds a master’s degree in public policy from George Washington University. Jullie Hoggan is the Transplant Director at patients.app and previously co-founded Square Knot Health, where she helped develop a peer-led transplant navigation program alongside a transplant nephrologist. She is also a kidney transplant recipient, bringing both lived experience and professional expertise to her work.  Jullie provides peer mentoring, education, and support to patients, living donors, and care partners through Kidney Solutions. She serves on the OPTN Patient Affairs Committee, the National Kidney Foundation Public Policy Committee, and several other national committees and advisory groups focused on improving transplantation and living donation.   Additional Resources NKF Advocacy Transplantation   Do you have comments, questions, or suggestions? Email us at [email protected]. Also, make sure to rate and review us wherever you listen to podcasts.

Empezar con la diálisis suele implicar replantearse la relación con la comida, y eso incluye comer fuera de casa. Pero salir a comer fuera no tiene por qué estar prohibido. En este episodio, hablamos de los aspectos emocionales y prácticos de comer fuera de casa, desde saber defenderse en los restaurantes hasta encontrar el equilibrio entre las necesidades dietéticas y la calidad de vida.   Notas del ponente Lauren Levy es la propietaria y dietista principal de una consulta privada que trabaja con seguros médicos y se centra en la salud renal. Lauren factura a las compañías de seguros y colabora a diario con pacientes con enfermedad renal crónica (ERC) y nefrólogos para prevenir la progresión de la ERC. A Melissa Bensouda le diagnosticaron enfermedad del riñón crónica tras dar a luz a su segunda hija. Tras el nacimiento de su tercer hijo, había perdido por completo la función renal. En junio de 2002 la incluyeron en la lista de espera de trasplantes. Aunque al principio Melissa comenzó los tratamientos de diálisis en un centro especializado, fue seleccionada para participar en un programa de hemodiálisis nocturna en casa. Tras seis semanas de formación exhaustiva, Melissa instaló una máquina en su dormitorio y se sometía a diálisis por su cuenta cada dos noches durante ocho horas mientras dormía. En abril de 2012 recibió el regalo de la libertad gracias a un donante fallecido. Casi cinco años después del trasplante, el riñón trasplantado a Melissa sufrió un rechazo, lo que la obligó a reanudar la diálisis en casa. La pasión y el compromiso de Melissa con la sensibilización se han reavivado tras un recorrido tan largo. A pesar de trabajar a tiempo completo y criar a tres hijos, Melissa está decidida a seguir defendiendo la tecnología, la educación y la investigación para mejorar los resultados de las personas afectadas por la enfermedad del riñón.   Alimentación para pacientes renales Información sobre cómo salir a comer fuera con confianza Cronómetro  

Starting dialysis often means rethinking your relationship with food—and that includes eating out. But dining out doesn’t have to be off-limits. In this episode, we’re talking about the emotional and practical sides of dining out, from advocating for yourself at restaurants to balancing dietary needs with quality of life. In today's episode we heard from: Lauren Levy is the practice owner and principal dietitian in an insurance based private practice that focuses on kidney health. Lauren bills insurance companies, works with CKD patients and nephrologists on a daily basis to prevent progression of CKD. Melissa Bensouda was diagnosed with chronic kidney disease after giving birth to her second daughter. After her third child, she had lost all functionality of her kidneys. She was placed on the transplant wait list in June of 2002. Although Melissa initially began dialysis treatments in-center, she was selected to participate in a nocturnal home hemodialysis program. After 6 weeks of extensive training, Melissa set up a machine in her bedroom and dialyzed on her own every other night for 8 hours while she slept. She received the gift of freedom from a deceased donor in April of 2012. Nearly five years post-transplant, Melissa’s transplant kidney rejected, causing her to resume dialysis at home. Melissa’s passion and commitment to awareness has been revived following such an extensive journey. Despite working full-time and raising three children, Melissa is determined to continue advocating for technology, education, and research to improve outcomes of those affected by kidney disease.  Additional Resources Nutrition for Kidney Patients Dining Out With Confidence Info Cronometer   Do you have comments, questions, or suggestions? Email us at [email protected]. Also, make sure to rate and review us wherever you listen to podcasts.

Vascular access is the lifeline for people on dialysis. Today we’ll cover the different types, how doctors determine the best option, what the surgery and recovery involve, and more! Today we're joined by Dr. Vandana Dua Niyyar, and kidney warrior Brittany Dickerson to discuss vascular access–an important topic that will hopefully help you all listening feel more informed and confident in your care.  In today's episode we heard from:  Vandana Dua Niyyar is Professor of Medicine in the Division of Nephrology and has received the Clinical Distinction of Master Physician at Emory University. Dr. Niyyar is passionate about promoting multidisciplinary collaboration in research and education in the field of vascular access; with the ultimate goal of optimizing access care and processes for dialysis patients. She currently serves as Immediate Past President of the American Society of Diagnostic and Interventional Nephrology (ASDIN). Dr. Niyyar has been recognized for her exemplary clinical and service achievements through various awards including ASDIN Distinguished Service Award in 2019, Emory Nanette Wenger Service Award in 2019, ASN Mid-Career Distinguished Clinical Service Award in 2020, ANIO Clinical Excellence Award in 2021, Emory DOM Outstanding Quality Achievement Award in 2022 and and ASDIN Gerald Beathard Award in recognition of her teaching excellence, scholarly activity, and clinical excellence in 2024. Brittany Dickerson- I am a dedicated mother, motivational speaker, and compassionate life coach living with Polycystic Kidney Disease (PKD). I use my kidney failure battle to educate and help others regarding kidney disease and transplantation. My personal journey has fueled my passion for helping others navigate life's challenges with courage and grace. Through partnership with the National Kidney Foundation, I have had the opportunity to mentor others and to be a guest for the National Kidney Foundation Podcast channel. My dedication to kidney awareness has led me to pursue becoming a National Kidney Foundation Advocate. I use my voice to spread my powerful message of perseverance and hope. My goal is to continue making an impact on individuals facing adversity, offering guidance, support, and being a shining example of strength in the face of hardship.   Additional Resources Vascular Access Guidelines   Do you have comments, questions, or suggestions? Email us at [email protected]. Also, make sure to rate and review us wherever you listen to podcasts.