Hot Topics in Kidney Health

Your Vote Matters: What People with CKD Need to Know Before They Vote

Voting is a powerful way to influence the policies that impact your life. By participating in elections and advocating for change, you can help shape the future. Dr. Jesse Roach, NKF’s Senior Vice President of Government Relations, and Lauren Drew, NKF's Congressional Relations Director, explain why your vote matters and how to get involved.

 

Dr. Jesse Roach is a strategist and clinician whose work focuses on improving access to kidney health by removing barriers to care through policy, partnerships, and research. He is currently the Senior Vice President for Government Relations at the National Kidney Foundation (NKF), where he leads the NKF’s advocacy efforts. Dr. Roach received his medical degree and completed a residency in Internal Medicine and Pediatrics at the Medical University of South Carolina. He completed a combined fellowship in pediatric and adult nephrology at the University of Michigan Medical School. He resides in Washington, DC.

Lauren Drew is the Director of Congressional Relations at NKF, and formerly worked at the National Hospice and Palliative Care Organization and on Capitol Hill. She's original from New Jersey and an alumna of the George Washington University and the Villanova School of Law. 

 

Do you have comments, questions, or suggestions? Email us at NKFpodcast@kidney.org. Also, make sure to rate and review us wherever you listen to podcasts.

Preparing for Emergencies as a Kidney Patient

Natural disasters like earthquakes, floods, or electrical power blackouts can disrupt crucial healthcare services, like dialysis treatment. The good news? You can prepare for emergencies. Kidney Community Emergency Response Project Director Keely Lenoir is here to tell you how.

 

Keely Lenoir, BS, currently serves as the Kidney Community Emergency Response (KCER) Program Manager, providing technical assistance and support related to emergency management to ESRD Networks, providers, patients, and other stakeholders. Keely has over 15 years of experience in the field of healthcare emergency management, including over eight years with the Florida Department of Health, Hillsborough County, Office of Public Health Preparedness, where she served as the Special Needs Shelter Program Coordinator.

 

Do you have comments, questions, or suggestions? Email us at NKFpodcast@kidney.org. Also, make sure to rate and review us wherever you listen to podcasts.

Treatment Options for Kidney Patients: Home Hemodialysis

Today, those with kidney failure have multiple treatment options like dialysis and kidney transplants; however, many aren't aware of treatments like home hemodialysis. What is home hemodialysis, and who could benefit from it? Learn all that and more on today's episode.

Jennie Wilson, MSN, RN has been working in Home Dialysis for over a decade and currently oversees several centers in the New York Metro Area that provide training and care to home dialysis patients. Her interest in population health and healthy equity has led to her passion for educating patients on their dialysis modality options. She has partnered with the National Kidney Foundation on various projects to share the clinical and lifestyle benefits of home dialysis.

Bell Maddux was first diagnosed with MPGN when she was fifteen years old. She went through college, got married and started her career before she became eligible for transplant. She was fortunate to receive a living donation from her father without having to be on dialysis. Then, after 10 years with her father’s kidney, Bell started in-center dialysis, and switched to home-hemodialysis in 2021. Bell is optimistically awaiting “the call” for a deceased donor, but in the meantime, she stays busy with her husband raising their two children, 7 and 12. She is a Peer Mentor and Patient Advocate with the National Kidney Foundation and has an 18-year career as a digital producer for a NY advertising agency.

 

Additional Resources:

Compare Medicare Providers 

Home Dialysis Information

Home Hemo Information

NKF Peers

Health Unlocked

 

Do you have comments, questions, or suggestions? Email us at NKFpodcast@kidney.org. Also, make sure to rate and review us wherever you listen to podcasts.

Understanding Your Lab Values

Living with chronic kidney disease can feel like learning a new language. There are many tests, and the results may leave you scratching your head. Today, Andrew Thompson, a physician's assistant specializing in nephrology, is here to help you decode your lab values and navigate your kidney health.

Andy Thompson is a nephrology physician assistant. He earned his bachelor’s degree at Olivet Nazarene University in Bourbonnais, Illinois, and master’s degree in physician assistant sciences at the University of Saint Francis in Fort Wayne, Indiana. He has been practicing nephrology for about 7 years in south-central Indiana. In his spare time, he enjoys reading/listening to audio books, going for walks, and spending time with his wife and children and dog.

 

Do you have comments, questions, or suggestions? Email us at NKFpodcast@kidney.org. Also, make sure to rate and review us wherever you listen to podcasts.

 

Xenotransplantation: Updates on Animal-to-Human Transplants

On today's special episode of Hot Topics and Kidney Health we're sharing audio from a recent webinar hosted by National Kidney Foundation on kidney xenotransplantation. Stay tuned to hear from the experts and learn about the latest updates on animal-to-human transplantation.

 

Dr. Tatsuo Kawai is a professor of surgery at Harvard Medical School and the A. Benedict Cosimi Chair in Transplant Surgery at Massachusetts General Hospital. He is also director of the Legorreta Center for Clinical Transplantation Tolerance. He was awarded the Martin Research Prize at MGH in 2009 and the New Key Opinion Leader Award by the Transplantation Society in 2010 for this work. In the field of xenotransplantation, he has collaborated extensively with eGenesis over the past five years, achieving over two years of survival for genetically edited kidney xenografts in nonhuman primates, which was published in Nature in 2023. In March 2024, he successfully performed the world first kidney xenotransplantation from the pig with 69 genomic edits in a living patient with end stage renal disease. 

Vineeta Kumar MD, FAST, FASN  is the lead nephrologist for the Living Kidney Donor and Incompatible Kidney Transplant programs at the University of Alabama in Birmingham. She is an expert in kidney transplantation, living kidney donation, incompatible kidney transplant, kidney paired donation and cardiovascular outcomes after kidney transplantation.

Peter Reese, MD, PhD, is an NIH-funded transplant nephrologist and epidemiologist. His research focuses on: a) developing effective strategies to increase access to solid organ transplantation; b) improving the process of selecting and caring for living kidney donors; c) determining outcomes of health policies on vulnerable populations with renal disease, including the elderly; d) testing strategies to improve important health behaviors such as medication adherence; and e) transplant ethics. He was a recipient of a Presidential Early Career Award for Scientists and Engineers, was elected member of the American Society of Clinical Investigation, and was a Greenwall Faculty Scholar in bioethics. He is a past chair of the Ethics Committee for the United Network for Organ Sharing (UNOS), which oversees organ allocation and transplant regulation in the US, and is an Associate Editor for the American Journal of Kidney Diseases. He co-led the THINKER, USHER, MYTHIC, and SHELTER trials involving transplanting HCV-infected donor organs into uninfected recipients. His work has been generously funded by foundations and the NIH, including a K-24 to support mentoring.

 

Do you have comments, questions, or suggestions? Email us at NKFpodcast@kidney.org. Also, make sure to rate and review us wherever you listen to podcasts.

 

Research Spotlight: Reporting and Management of Hemodialysis Symptoms

For people with kidney failure, hemodialysis is a life saving treatment. On average, people can live for 5 to 10 years on dialysis, but many have lived 20 to 30 years. Hemodialysis also comes with some distressing symptoms like muscle cramps, itching, and fatigue. Doctor Jennifer Flythe and Precious McCowan, a dialysis patient and kidney advocate, are here to talk about a new study that aims to better monitor and help manage the symptoms of hemodialysis.

Dr. Jenny Flythe, MD -is a nephrologist and clinical investigator at the University of North Carolina (UNC) Kidney Center, Associate Professor and Vice Chief of Nephrology and Hypertension at the UNC School of Medicine, and Director of Dialysis Services at UNC Hospitals in Chapel Hill, NC. She conducts patient-oriented qualitative, epidemiologic, and prospective research aimed at improving outcomes and experiences among individuals with kidney disease.

Precious McCowan, BS, MS, ESRD- At the age of nine, I was diagnosed with type 1 diabetes; living with this condition for over 25 years progress my kidney failure.  By the age of twenty-seven, I was placed on in-center hemodialysis. In 2010 I received both a kidney and pancreas transplant; unfortunately, I had to return to dialysis and insulin shortly after transplantation.  In 2019 I received my second kidney transplant. Before my second kidney transplantation, I did dialysis for nine years. I have served as a Facility Patient Representative (FPR) for my dialysis facility throughout this challenging yet rewarding journey. I heartily work to advance patient health engagement and renal education to better care while on dialysis. Acquiring the passion for assisting those affected by End-Stage Renal Disease (ESRD) promoted my affiliation with the ESRD Medical Review Board (MRB) and the ESRD Patient Advisory Council (PAC) of Texas. Also, I am a member of the Kidney Patient Advisory Council; as an advocate partnering with ESRD caregivers and medical professionals to effectively meet the needs of those living with kidney disease.

 

Do you have comments, questions, or suggestions? Email us at NKFpodcast@kidney.org. Also, make sure to rate and review us wherever you listen to podcasts.

Gender Diversity & Kidney Care

The most commonly used equation that determines someone’s kidney function includes a binary male-female sex coefficient. But what does this mean for the care of transgender, gender-diverse, and nonbinary people? Cameron Whitley, an associate professor with kidney failure experience, and researchers Keila Turino Miranda, a PhD student, and Dr. David Collister, a nephrologist, shed light on this important topic.

 

Dr. David Collister (he/him) is a Kidney Doctor, Clinician-Scientist and Assistant Professor at the University of Alberta. He has a PhD in Health Research Methodology from McMaster University. His research program is funded by the Canadian Institutes of Health Research and the Kidney Foundation of Canada and focuses on randomized controlled trials of interventions for uremic symptoms, cannabinoids, the responsiveness of uremic symptoms to the initiation of dialysis, metabolomics, proteomics and the intersection of gender diversity and kidney disease.

Keila Turino Miranda (she/her) is a first year PhD Student in the Cardiovascular Health and Autonomic Regulation Laboratory at McGill University. Ms. Turino Miranda’s work focuses on understanding and addressing the unique healthcare needs and disparities faced by transgender, gender-diverse, and non-binary (TGD) individuals in the realms of nephrology and cardiology using a patient-oriented approach.

Cameron T. Whitley, Ph.D. (he/they) is an Associate Professor in the Department of Sociology at Western Washington University. He studies issues concerning the environment, human-animal relationships, and transgender-affirming medicine. He got involved with studying transgender-affirming medicine when he was diagnosed with kidney failure and received a kidney transplant while writing his dissertation. Through this process, he coauthored one of the first articles addressing the discrepancies in evaluating kidney function for transgender people. He has over five dozen publications featured in places like Proceedings of the National Academy of Sciences, Academic Emergency Medicine, Clinical Chemistry, and Annual Review of Sociology.

 

Additional resources:

Kidney Function in a Gender Diverse Landscape

 

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Pride in Practice: Empowering LGBTQIA+ Communities in Kidney Health

Empowering the LGBTQIA+ community is important during Pride Month and beyond. Today we're speaking with Brian Sims, Living donor and former PA State Representative, and Josh Wilder, DPM, transplant recipient, podiatrist and former Survivor contestant, about how to empower the LGBTQIA+ community in kidney health and how to create an inclusive and affirming environment for all. 

 

Dr. Joshua J. Wilder- My name is Joshua Wilder and I am a 35 year old foot and ankle surgeon. I identify as a cis, gay, black, man who currently lives in Atlanta, GA. I am a native of Pittsburgh, PA with an upbringing in Cincinnati, OH. I was born with Prune Belly syndrome which required me to have a kidney transplant at 9 years old. I was on season 44 of the grammy-nominated, reality tv show Survivor 44. My favorite pastime is living life to the fullest.

 

Brian Sims served as one of the most visible out elected officials in the United States and is one of the premier policy experts in the current landscape, serving as the Managing Director of Government Affairs & Public Policy at Out Leadership. His tenure at this renowned global advisory organization is marked by his leadership in founding and steering a pivotal division dedicated to advocating for LGBTQ+ equality and inclusion within the business sector. Sims brings a wealth of experience from his distinguished career in public service and policy advocacy, leveraging his deep expertise to shape and guide strategies that champion LGBTQ+ rights on a global scale.

 

Additional resources:

https://www.outcarehealth.org/

https://www.kidney.org/newsletter/impact-unequal-care-lgbtq-kidney-patients

 

Do you have comments, questions, or suggestions? Email us at NKFpodcast@kidney.org. Also, make sure to rate and review us wherever you listen to podcasts.

 

Unfiltered Story: Next steps after losing a transplant

Losing a kidney transplant can feel very overwhelming. Today we're here with Anthony Tuggle, a former NKF board member, to hear how he's coping with losing a transplant and learn what's next for him.

 

Anthony Tuggle is the Afiniti President of Customer Operations, and a former Board Member of the National Kidney Foundation and of NKF Serving Alabama, Georgia and Mississippi. Tuggle is responsible for expanding global contact center operations, accelerating business development, overseeing product deployment and engaging clients to generate value for enterprises, customers and employees. Prior to joining Afiniti, Tuggle served as Vice President – Customer Care, Sales and Service Centers at AT&T where he led more than 30,000 sales leaders and has built a culture that fosters a passion for winning. He models a "find-a-way" mindset in his approach to leadership and inspires his team to embrace the importance of agility. Tuggle is the acclaimed author of I'm Better Not Bitter: My Personal Journey - Kidney Transplant Recipient's Story of Winning in Business & Life and Moving Forward, which shares how he has overcome obstacles, is self-motivated, and creates a work culture of success. Notably, Tuggle led efforts in his local community as the 2018-2020 Chairman of the Atlanta Kidney Walk, which raised more than $500,000 for NKF. He also has partnered with AT&T to raise more than $200,000 to date.

 

Additional resources:

NKF Peers

 

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Coping with Losing a Transplant

Everyone loves to talk about kidney transplant success stories but rarely do we talk about what happens if a transplant fails. On today's episode Dori Muench, a post transplant social worker, and Sue George, a kidney warrior with experience losing a transplant, are here to discuss the impact of losing a kidney and how to cope.

 

Dorothy Muench, LCSW is a post-transplant social worker with the Abdominal Organ transplant department with Wake Forest Baptist Medical Center for the past 7 years. In this capacity, she works with numerous individuals who have received a kidney or pancreas transplant and works to provide concrete and emotional support. Before this, Dori worked in dialysis for close to 10 years and has seen and heard the effects people have while on dialysis. She works hard to advocate for people to be transplant and find living donors so they can decrease as much time on dialysis as possible. Dori lives in North Carolina with her husband, 2 daughters and golden retriever.

 

Sue George is a kidney patient, with 27 years of experience who started on dialysis in 1997. She received a transplant in July of 1999 but had many setbacks. In October of 2000 she lost her transplanted kidney. Sue went back on dialysis and has been ever since. She now works with NKF as a Peer Mentor and work with KCM of Lincoln as a Mentor and try to improve how dialysis is introduced into patients' lives. She feels she has a lot of understanding of dialysis and transplant to help patients deal with the emotional side of the process. Sue is married to her husband Marty of 17 years, and they have 3 wonderful grown children. They also have 1 dog and 1 cat. She works as a secretary at St John Lutheran Church.  In her free time she loves to read and garden.

 

Additional resources:

NKF Peers

 

Do you have comments, questions, or suggestions? Email us at NKFpodcast@kidney.org. Also, make sure to rate and review us wherever you listen to podcasts.

Artificial Kidneys

When will the artificial kidney be ready for human use? Learn more about the progress of the artificial kidney and how it will affect someone's quality of life from expert Shuvo Roy, Ph.D.

 

Shuvo Roy, PhD is a bioengineer focusing on the development of medical devices to address unmet clinical needs through strong collaboration and a multidisciplinary approach. Dr. Roy is a professor at the University of California, San Francisco in the Department of Bioengineering and Therapeutic Sciences (BTS). In addition, he serves as the Technical Director of The Kidney Project and is a founding member of the UCSF Pediatric Device Consortium. He has developed and currently teaches a course on medical devices, diagnostics, and therapeutics and regularly lectures on the medical device design process to UCSF graduate students and to national and international academic and industry audiences. He is the author of more than 100 publications and co-author of three book chapters, and holds multiple patents for device developments.

 

Additional Resources 

Transplantation Resources (Transplants For All)

 

Do you have comments, questions, or suggestions? Email us at NKFpodcast@kidney.org. Also, make sure to rate and review us wherever you listen to podcasts.

What is a high KDPI kidney?

When a kidney from a deceased donor becomes available, it is scored on a system called the Kidney Donor Profile Index (KDPI). How does the KDPI work and is it accurate at predicting possible transplant survival compared to a lower KDPI donation or a living donor? On this episode, we speak with experts to get the facts.

 

Nichole Jefferson is a kidney transplant recipient and active member of NKF’s Kidney Advocacy Committee. She has attended every Kidney Patient Summit with NKF in Washington, D.C. since 2014, representing the states of Iowa and Texas. Presently, she is the Co-Chair of the NKF Kidney Advocacy Committee’s Diversity & Health Equity Advisory Committee. In this position, she shares her experiences and advocates for kidney disease awareness and needs.  This is a way for her to pay it forward to her community.

 

Anne Huml, MD, MS is a transplant nephrologist and clinical researcher in the Department of Kidney Medicine within the Cleveland Clinic’s Glickman Urological and Kidney Institute.  She is an Assistant Professor of Medicine at Cleveland Clinic Lerner College of Medicine. One of her primary research focuses is on health disparities in kidney disease, particularly on access to kidney transplant. She has worked on research teams to: improve access to the kidney transplant waiting list through the use of patient navigators; evaluate deceased donor organ offers to patients at the top of the waiting list; and investigate access to kidney transplant and transplant outcomes in large, national databases.

 

Additional Resources 

Transplantation Resources (Transplants For All)

Underutilized Kidneys

 

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Fad diets and kidney diets

It’s hard to keep up with all the new diets that cycle through news outlets and social media. Do you know which ones are right for you and your kidney health? On this episode, you will hear from experts on how to find the diet that's right for you and how to stick to it.

 

Amanda Hays, MS, RDN, LD is a Registered Dietitian Nutritionist in Austin, TX with over a decade of experience serving thousands of people across all stages of chronic kidney disease. As the owner of Relish Nutrition Therapy, she specializes in taking the most powerful, research-based medical nutrition therapy recommendations and practically implementing them into real life without sacrificing the joy of food. She believes a healthy diet starts with a healthy relationship with food and that everyone with kidney disease deserves access to quality care and support. .

Jane DeMeis, MS, ODCP became involved with the National Kidney Foundation when she was diagnosed in 2018 with stage 4 kidney disease. She was the Director of Education and Organizational Development for U R Medicine Home Care. She is now a certified Kidney Coach. She has supported local cooking classes with recommendations for kidney friendly meals. She works with patients who have just been diagnosed with CKD at either level 3 b or 4 and have been given a diet to follow and need help on how to manage their eating and living with CKD diagnosis. 

 

Additional Resources 

Nutrition and Kidney Health

Kidney-Friendly Recipes

 

Do you have comments, questions, or suggestions? Email us at NKFpodcast@kidney.org. Also, make sure to rate and review us wherever you listen to podcasts.

BONUS: kidney disease and the holiday season

Holidays can be difficult for individuals with CKD. Tune in to gain insight into the patient holiday experience and how professional teams can provide education for patients to ensure the best holiday outcomes.

 

In this episode we spoke with,

 

Dori Muench, LCSW, CCTSW, FNKF

Osama El Shamy, MD

Jesse Engelken, MPH, RDN, LD,CD

Joyce Vergili, EdD, RD, CSR, CDN

Malenia Alvarez, kidney patient

Nupur Gupta, MD

Elizabeth Shanaman, RD, CD, FAND

Candria Denzmore, patient advocate 

 

Do you have comments, questions, or suggestions? Email us at NKFpodcast@kidney.org. Also, make sure to rate and review us wherever you listen to podcasts.

 

Art and music therapy for kidney patients

Coping with kidney disease and dialysis can be difficult. Sometimes you have to think outside the box! Have you considered music or art therapy? Today Social Worker Melissa Fry and patient Steve Light are here to share their experiences with using music and art as coping strategies.

In this episode we spoke with, 

Melissa Fry, MSW, CAPSW is a dialysis social worker at Mile Bluff Medical Center. She has worked in the dialysis unit for the past 25 years. She has focused on assisting her patients with anxiety, depression and other mental health issues. She has used music as one technique to assist her patients with coping with various life stressors.

Steven Light is an artist from Swindon UK. He used his art as a way to express himself though a second wave of kidney failure, and created an exhibition around this experience called ‘Fistula’. His brother lovingly donated a kidney to him in July 2022 and both have fully recovered.

 

Additional Resources 

Effect of music therapy on dialysis patients

 

Do you have comments, questions, or suggestions? Email us at NKFpodcast@kidney.org. Also, make sure to rate and review us wherever you listen to podcasts.