Hot Topics in Kidney Health

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.

LGBTQ+ Advocacy in Healthcare

Over 50% of LGBTQIA-plus people have experienced some form of healthcare discrimination and over 25% of transgender people reported being denied care due to their transgender status. Not having proper health care or avoiding health care due to discrimination, can result in dire consequences, including an increased risk of health problems like kidney disease. What is this discrimination, and how can you advocate for yourself and LGBTQIA+ rights? In today’s episode Dr. Joshua Wilder, a podiatrist, and Representative Jeff Currey, two kidney transplant recipients and members of the LGBTQIA+ community, discuss this and more.

On today's episode we heard from: 

 

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.

Rep. Jeff Currey- A lifelong resident of East Hartford by way of County Limerick, and a proud son, brother, and uncle, is currently serving a fifth term representing the 11th Assembly District, which is made up of parts of East Hartford and Manchester. Jeff, a former Deputy Majority Leader who chaired the Screening Committee on behalf of Majority Leader Rojas, currently serves on the Appropriations, Commerce, and Judiciary Committees. Starting in the 2023 legislative session, Jeff shifted leadership roles to take on the House Chair of the Education Committee, which he has served on since joining the legislature in 2015. Jeff has also worked tirelessly to bolster protections for living organ donors. As a kidney transplant recipient himself, Jeff introduced legislation in 2020 and 2021 to prohibit insurers from discriminating against living organ donors.

 

Additional Resources:

Pride Month Blog Article 

 

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.

 

NKF Innovation Fund: developing new treatments for kidney patients

For far too long treatments for CKD haven’t changed. Launched in 2021, the NKF Innovation Fund works to accelerate funding, and development of therapies that kidney patients deserve. On this episode, you will hear from NKF CEO Kevin Longino interviews Kathleen St. Jean, Chief Commercial Officer of 34 Lives, one of the first recipients of a significant investment from NKF’s Innovation Fund to help further develop a new technology to rehabilitate donated kidneys for transplantation.

 

Kathleen St. Jean

Kathleen’s background makes her uniquely suited to lead the team at 34 Lives with CEO Chris Jaynes. She began her career at Merck & Co., Inc., with a number of leadership roles in Sales, Professional Learning & Development and Customer Strategy. She was known for her creativity, forward thinking and passion to always put customers and patients first. In her last role at Merck, Kathleen served as sales lead for the commercialization of two adherence software products with a goal of improving health outcomes.In Phase Two of her career, Kathleen served as Director of Business Development for Imedex and Executive VP at SeaStar Medical. The latter focused on therapies designed to reduce the consequences of excessive inflammation on vital organs. Kathleen and Chris worked together at both companies and decided to combine their knowledge of healthcare and interest in transplantation into solving the current organ transplant crisis in the US. They founded 34 Lives (formerly Renovera) in March 2021 as a Public Benefit Company (PBC) to serve and honor organ donors, recipients and those who care for them.

Kevin Longino

Kevin Longino has been Chief Executive Officer (CEO) of the National Kidney Foundation since 2015. He first became involved with the organization in 2008 as a volunteer advocate, and in 2012 he joined the national Board of Directors. As CEO, Kevin leads a team headquartered in New York, NY, and field offices around the country. NKF is supported by thousands of volunteers nationwide and serves millions of patients and healthcare providers seeking support and education every year. In 2004, Kevin received a life-saving kidney transplant after at-home peritoneal dialysis and is now 19 years “kidney strong”. He readily shares his story and uses his experience to help other kidney disease patients.

 

Additional Resources:

NKF Innovation Fund 

 

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.

 

 

Living donors and mental health

Donating a kidney is one of the most selfless gifts one person can give to another. But what is that experience like for the donor before and after the transplant surgery? Today, we'll hear from Jessica Kolansky, a living kidney donor, and Alexandra Catalyst, a transplant coordinator, about the post transplant experience and what resources are available to donors after the surgery. On today’s episode we heard from:

 

Jessica Kolansky

In 2013, Jessica’s Dad was diagnosed with end stage renal disease. When Jessica and her brother learned of the diagnosis, both immediately volunteered to be tested for compatibility, despite Dad’s exclaiming “I didn’t raise you for spare parts!” Both were eligible donors, but Jessica pulled the big sister card and became the living donor on June 3, 2014. Jessica and her Dad are each doing well as they approach their 9th kidneyversary.Jessica initially got involved with the National Kidney Foundation while researching what to expect as a living donor and quickly signed up for the Philadelphia Kidney Walk. She received a call shortly thereafter from a member of the local NKF office and an instant bond was formed. Team Papa K has been among the top fundraisers in Philly for the last nine years. Jessica was honored to join the Board of Advisors for Eastern PA and NJ and enjoys working with the Kidney Advocacy Committee to advocate for kidney patients across the country.  Jessica and her husband Daniel, also a kidney donor to his father, live in Philly with their dog Paco. 

 

Alexandra Tatooles LCSW, ACM-SW

Lexi Tatooles is the living donor social worker at Rush University Medical Center. She is also the outpatient ambulatory care social worker for the cardiology and vascular department. She received my Master’s in Social Work at UIC Jane Addams College of Social Work in 2018 and from there started her social work career at Rush in 2019. Although she wears many hats in her current roles, she really enjoys getting to work with the various disciplines within the hospital setting and coming from a perspective of looking at patients from a holistic approach to better advocate for patients’ needs and identify barriers. When she is not at work she love to get outside and explore my Bucktown neighborhood with her fiancé and their 90lb goldendoodle named Charlie.

 

Additional Resources:

NKF Peers

CKD and Mental Health 

 

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.

Laughter therapy for kidney patients

Is laughter really the best medicine? On today’s episode we’ll discuss an exciting new coping strategy for dialysis patients called guided group laughing therapy. What is it and how does it help? Dr. Paul Bennet who ran a study on the benefits of laughing therapy and Kimberly Super-Harrigan, a dialysis patient, are here to break it down.

 

Professor Paul Bennett

Paul has experience in both academia and industry in Australia and the US. He also is Director of Research, Clinical Medical Affairs, Satellite Healthcare based in San Jose, California. Paul's program of research underpins his mission to positively impact the lives of people with chronic kidney disease. Research exploring peer support, laughter and happiness, resistance exercise, patient-reported outcomes, patient activation and home dialysis has contributed to this mission. Paul is an investigator on four current Category 1 studies (3 x NHMRC studies and 1 Canadian (CIH)) that will improve the lives of people with chronic kidney disease. Paul is an active leader in the International Society of Nephrology (ISN), The Global Renal Exercise (GREX) Network, The International Society of Nutrition and Metabolism (ISRNM) and The Renal Society of Australasia (RSA). Paul's most recent impactful work was leading the ISPD and GREX global exercise and activity recommendations for people with peritoneal dialysis.

 

Kimberly Harrigan

My name is Kimberly Harrigan and I have been on in center dialysis for six years. I have found that family connection at my clinic and we enjoy laughing together while we are getting connected to our machines. Life has thrown me a lot of curve balls, but I have been able to keep fighting and laughing.

 

Additional Resources: 

Laughter Therapy Information

Professor Paul's Research Publication

 

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.

 

BMI and weight management for kidney patients and living donors

Obesity is one of the major risk factors for developing kidney disease, which is measured through the body mass index or BMI. This measurement factors into the process for both living donors and transplant recipients. On today’s episode, you’ll learn how to measure your BMI and hear from both kidney patients on how managing their weight affected their kidney health.

In this episode we spoke with, 

Carol Murray is a Quality Manager for Boston Scientific in Minnesota. On June 12, 2019, she donated a kidney to her husband who was diagnosed with Chronic Kidney Disease in 2015. Introduced to the National Kidney Foundation too and through the transplant journey Carol became passionate about ways to draw attention to need for living donors as well as advocating for living donors. Working with the National Kidney Foundation on a local level she has participated in the Big Ask:Big Give, Kidney Walks, and Advocacy Day. With a strong desire to provide help and hope for others Carol has been involved in several roles with a few different non-profit organizations. Carol has a B.S degree in Quality Management from the University of Minnesota Crookston, and an A.A.S in Manufacturing Technology from Hennepin Technical College. 

Golnaz Ghomeshi Friedman, RD, is a Senior Dietitian and Certified Clinical Transplant Dietitian for UC Davis Health Transplant Program and has been working in this role since 2014. Golnaz values the importance and impact of nutrition in the transplant population and has been involved in a variety of projects directly impacting patient care. She has developed and modified policies that have made a significant impact on the decision-making process for transplant patient selection. Golnaz has worked with the transplant team and served as co-investigator on various research projects including those centered around assessment of malnutrition, functional status and frailty in transplant candidates.

Melanie Pina was diagnosed with lupus nephritis in 2018, and in 2021 she became a peritoneal dialysis patient. Melanie started sharing her journey online since April 2022 and recently had weight loss surgery to be on the transplant list. Now she is waiting for a transplant and hopefully, her second shot at life will come soon. 

 

Additional Resources: 

Melanie's Blog Article 

5 Exercises for 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.

Access to reproductive care for kidney patients

In 2022, the US Supreme Court overturned precedent established by Roe v Wade, eliminating the constitutional right to abortion. Family planning decisions can be difficult and complex for kidney patients. On today’s episode, we’ll discuss how this impacts kidney patients and disadvantaged patients with limited access to healthcare.

 

On this episode we spoke with, 

Harriett Oppenheim

Born and raised in Jackson, Mississippi, Harriett Oppenheim has over fifteen years of experience working in the public sector. Harriett graduated from Jackson State University in May 2005 in Jackson, Mississippi where she received her Bachelors Degree in English. Before beginning law school Harriett served as the Project Organizer for the Mississippi Women’s Health Project with the ACLU of Mississippi. Harriett attended the University Of Mississippi School Of Law where she received her Jurist Doctorate in May 2008.  After graduating law school Harriett then served as Law Clerk for the Honorable Lillie Blackmon Sanders of the Sixteenth Judicial Circuit Court in Natchez, Mississippi. She also served as Advocacy Coordinator/Attorney for the ACLU of Mississippi’s Juvenile Justice Program. Harriett is now a Senior Trial Attorney for the Equal Employment Opportunity Commission in the Jackson Area Office. Harriett is a Member of the Mississippi Bar Association, American Bar Association, Delta Sigma Theta Sorority, Inc., National Employment Law Association, American Constitution Society, and Magnolia Bar Association. She is married to Jed Oppenheim and has a two year old son.

Dr. Andrea Oliverio

Dr. Andrea Oliverio is a nephrologist and Assistant Professor at the University of Michigan. Her research focuses on the reproductive health of people with kidney disease and improving patient-centered reproductive counseling in this population. She sees patients with all stages and types of kidney disease in clinic and has a particular focus on young adults and people with glomerular 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.

 

Additional Resources: 

Dobbs Ruling Puts Kidney Patients in Jeopardy

Find information about abortion policies in your state

Information on contraception and abortion

Find and connect with abortion clinics, services and resources by state