Hot Topics in Kidney Health

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.

 

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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

 

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.

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.

Superfoods for patients with kidney disease

You may have heard the buzzword superfoods but what are they and do they have special qualities? Board-certified renal dietitian, Jen Hernadez is here to break it down.

 

In this episode we spoke with,

Jen Hernandez RDN, CSR, LDN- Jen Hernandez is a registered dietitian and a certified specialist in renal nutrition. She has served the kidney community in dialysis clinics as well as with the National Kidney Foundation of Hawaii to help spread awareness of kidney disease and strive for prevention with early detection and interventions. In 2018, Jen founded Plant-Powered Kidneys. Jen uses her virtual private practice to help people in all stages of kidney disease, from stage one through transplant, to provide evidence-based nutrition guidelines and recommendations. The clients and students of Plant-Powered Kidneys learn and implement the fundamentals to keep their kidney function so that they can delay or even prevent kidney failure and the need for dialysis.

 

Additional Resources 

Superfoods 

Superfoods Blog

 

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 do clinical end points and trials mean for CKD research?

Clinical trials exist to help prevent, screen for, diagnose, or treat diseases and other health problems. Without them, we would not have new treatments or other advances in health and medicine. But how are the clinical trial endpoints, or the preferred outcomes of these trials determined? Today, Anthony Gucciardo NKF’s Senior Vice President of Strategic Partnerships, Dr. Joseph Vassalotti, NKF’s Chief Medical Officer, and Kent Bressler, a Patient advocate and FSGS patient, discuss this and more.

 

In this episode we heard from: 

Dr. Joseph Vassalotti MD

Dr. Vassalotti is the Chief Medical Officer of the National Kidney Foundation (NKF) and Clinical Professor of Medicine in the Division of Nephrology, at Icahn School of Medicine at Mount Sinai. At NKF, his major focus is implementation of evidence-based clinical practice guidelines in chronic kidney disease (CKD). He led collaborations to develop the Kidney Health Evaluation for Adults with Diabetes quality measure to improve evidenced based estimated glomerular filtration rate and albuminuria testing to guide detection, risk stratification and interventions proportional to risk in the U.S. He also served as PI for an AARP-funded Kidney Health Evaluation for Adults with Diabetes to analyze quality measure satisfaction with detection, evidenced-based
therapies and health equity. Currently, he serves as Principal Investigator for the Kidney Score Platform, an NKF educational project funded by the Veterans Administration Center for Innovation to improve awareness and education among Veterans with and at risk for CKD in the primary care setting. He is also a co-investigator for the Center for Disease Control and Prevention’s CKD Surveillance Project. Dr. Vassalotti typically sees approximately 40 patients per week and has over 100 publications in peerreviewed journals.

Anthony Gucciardo

Anthony is responsible for forging and maintaining relations with key external stakeholders across a wide range of industries, to advance NKF’s mission and objectives, along with those of its partner organizations.  Anthony oversees two national Corporate Development Teams, focused on securing revenue necessary to ensure NKF programmatic excellence and impact.  He has been with the Foundation since 2002. Prior to NKF, Anthony was a Hematopoietic Stem Cell Technologist at Memorial Sloan-Kettering Cancer Center in New York City, where he was responsible for processing autogeneic/allogeneic bone marrow and peripheral blood stem cells for transplantation. He holds a master’s degree in Biochemistry from Columbia University.

Kent Bressler

Kent is a retired RN who was diagnosed with FSGS in 1984, and received a living donor transplant from his brother Kip in 1987. Kent is an active advocate for preemptive kidney transplant and has on the recommendation of NKF worked closely with the DoD and PCORI as a consumer peer reviewer. He is an NKF peer mentor and advocate who has collaborated on an editorial “Change in Albuminuria and GFR as End Points for Clinical Trials in Early Stages of Chronic Kidney Disease,” published in AJKD in 2019. He will also be participating in the development of the new NKF Patient Network serving on the Data Input and Integration Committee. He has been an active hill advocate for the NKF for six years and was the proud recipient of the 2017 Richard K. Salick Advocacy Award. Kent is also an Army Veteran and retired from the Veterans administration as an RN. He is the co-founder of Kidney Solutions a not for profit program in Texas that assists patients and families in the transplant process and in finding a donor. He is currently an assistant team leader for Region 7. Kent and Cathy Bressler have been married for 50 years and their family consists of Gretchen and Todd Rossington and their son Colt and Celeste and Alex Brown and their children John Banks, Catherine and Alexis Brown.

 

Additional Resources: 

Find Clinical Trials 

Clinical Trial Q&A 

Xenotransplantation Info 

 

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.

 

Mindfulness meditation for kidney patients

You may have heard the term mindfulness before but what does it mean, what are the benefits, and how can you integrate mindfulness into your life? On today’s episode Gary Petingola a Social Worker certified to teach Mindfulness-Based Stress Reductionexplains all this and more.

 

In this episode we heard from, 

Gary Petingola MSW, RSW

Gary has had a strong presence with the National Kidney Foundation - Council of Nephrology Social Workers since 2000 having co-planned the Professional Councils Conference in Toronto.  As a regular presenter at the NKF Spring Clinical Meetings, Gary recently participated in a NKF Live Facebook event on the topic of Vaccines, Pandemic Fatigue, and Mindfulness. Gary’s book - The Response: Practising Mindfulness In Your Daily Life (2020) was inspired by his work in nephrology. Gary is qualified to teach Mindfulness-Based Stress Reduction through the Center for Mindfulness, UMASS and Certified through the Mindfulness Center, Brown University School of Public Health. Gary has co-founded Mindfulness on the Rocks - Meditation Solutions for Maximum Life Impact. 

 

 

Additional resources: 

Books:
Petingola, G. The Response: Practising Mindfulness in Your Daily Life (2020)
Kabat-Zinn, J. Wherever You Go There You Are – Mindfulness Meditation in Everyday Life

Websites and Apps:

Jon Kabat-Zinn

Mindful
Meandering Journey

Headspace
Calm
Insight Timer
Ten Percent Happier

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.

 

Transplants for All

At the National Kidney Foundation, we believe that everyone who needs a kidney should get a kidney. To make this dream a reality, we’ve launched the Transplants for All Initiative. What is this initiative and how will it make a difference in the lives of people with kidney disease? In today’s episode special guests Morgan Reid, NKF’s Transplant Policy & Strategy Director and Haley Jensen, NKF’s Transplant Programs Director explain this and more.

 

Morgan Reid

Morgan Reid is the Director of Transplant Policy & Strategy for the National Kidney Foundation, implementing strategies and creating patient-centric policies that promote equitable kidney transplantation access. A kidney transplant recipient herself, with personal experience as a chronic kidney disease, kidney failure, and dialysis patient, she has a deep passion for improving organ donation and transplant processes.

 

Haley Jensen 

Haley Jensen, MPH MBA, is Director of Transplant Programs for the National Kidney Foundation. She is responsible for leading growth and strategy for transplant educational programs, as well as overseeing organization-wide initiatives to ensure Transplants for All through research, innovation, awareness, and professional education. Haley is a kidney transplant recipient with years of volunteer advocacy and peer mentorship experience. She is passionate about ensuring every patient has the opportunity to receive the gift of life.

 

Additional resources: 

Transplants for All Resources

Transplants for All Blog 

 

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.

 

Sexuality and kidney disease

Sexual dysfunction (SD) is incredibly common in patients with kidney disease. In today's special cross over episode from Kidney Commute, you'll hear why it is so prevalent, treatment options, and how to improve communication around this important but often neglected aspect of health.

 

Additional resources: 

Sexuality and Kidney Disease

Data from the CDC 

 

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.