After a kidney transplant, your diet still plays a big role. Do you know which foods to avoid or how your transplant medications affect what you can eat? On today’s episode, we’ll discuss how you can keep your new kidney healthy while also maintaining a healthy weight.

One of the jobs your kidneys is to manage your body’s levels of potassium, which keeps your heartbeat regular and your muscles working right. Many kidney patients need to watch what they eat to ensure that their potassium levels don’t become too high and cause dangerous health risks. On today’s episode, you’ll hear how to best manage your potassium levels to protect yourself.

In this episode, we spoke with:

Jessianna Saville, RD

Jessianna Saville RD, CSR LDN is a renal dietitian with over 12 years experience. After working 8 years in the dialysis setting, she decided to fully concentrate her energy on her virtual practice and helping provide early nutrition intervention for kidney disease clients. She is the founder and owner of KidneyNutritionInstitute.org, a collective of expert renal dietitians that serve all areas of kidney disease. She is also the founder of RenAlign, a non-profit that advocates for nutrition as a first line therapy for kidney disease through the RenaLIFE and Ren.Nu programs. She and her team develop training resources for other renal dietitians at RenalNutritionMastery.com, helping them stay up-to-date on all things renal nutrition and guiding them through setting up their own private practice. Her passion for good food shows up in the kidney-friendly recipes her team creates on the blog and the amount of time she spends cooking herself. Along for the ride with Jessianna are her three children and husband, a very old dog, 2 kittens, and 4 friendly backyard chickens.

Dawn Edwards

Self-described 25+ Year chronic kidney disease Warrior, Dawn P. Edwards, a nocturnal home hemodialysis patient, has experienced first-hand, every renal replacement modality including a kidney transplant, rejection and return to dialysis. Dawn is dedicated to improving the quality of life of people with kidney disease, and is also a resource to her community, sharing her story and educating patients, professionals and the public about the importance of maintaining a healthy lifestyle and the relationship between hypertension, diabetes and kidney disease, especially among people of color and low socioeconomic status. Dawn has served the community for over 25 years through the IPRO ESRD Network of New York in multiple roles including employment as their Community Outreach Coordinator. She is an NKF Kidney Advocate and Peer Mentor and also currently serves on many kidney disease related boards.

Additional resources:

Potassium and Your CKD Diet

Kidney-friendly recipes

Episode transcript

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!

While many people feel like the world is headed back to normal, many kidney patients can feel left behind. COVID-19 is still top of mind for those who are immunocompromised and we're here to offer resources and support. On today's episode, our guests will answer your questions about how COVID-19 affects transplant, dialysis, and early stage CKD patients.

In this episode, we spoke with:

Dan Weiner, MD

Dan Weiner is a nephrologist at Tufts Medical Center and Associate Professor of Medicine at Tufts University School of Medicine. His clinical interests include home and in-center dialysis, hypertension and CKD. His research has focused on cardiovascular and cerebrovascular disease in CKD; clinical trials in CKD, dialysis and hypertension; decision-making in advanced CKD; and policy. He works closely with the American Society of Nephrology on kidney disease policy. He is DCI's Medical Director of Clinical Research, and he is the Editor-in-Chief of the NKF's journal, Kidney Medicine, and the NKF's Primer on Kidney Diseases, the 8th edition of which will be published in early 2022.

Patrick Gee

Patrick Gee is a Community Activist, fighting against systemic issues such as poverty, social and racial injustices, criminal justice reform, and education reform. Patrick worked for the Virginia Department of Corrections and the Virginia Department of Juvenile Justice, where during his time in service, he acquired several awards and recognitions. In April 2013, Patrick was diagnosed with Stage 3b End-Stage Kidney Disease (ESKD). He began doing Peritoneal Dialysis (PD) in December 2013. On April 21, 2017, Patrick received a kidney transplant. Patrick has been very passionate in his pursuit to speak on behalf of the underserved, undervalued, and disenfranchised communities of color. Because of this, he serves as an advocate and kidney patient expert for a number of organizations including the NKF, CMS, FDA, KHI, AKF, AAKP and HDU.  

Additional resources:

COVID-19 resources

What you need to know about COVID-19 in 2022

COVID-19 vaccine and treatments for people with kidney disease

Regional resources for COVID-19

Kidney disease and COVID-19

Episode transcript

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!

When we hear the word research, most of us think of innovative breakthrough treatments and technologies. But applied clinical research could not be possible without another type of research called basic science research in which scientists study the fundamental processes of the human body. In this episode, we’ll learn what basic science research is and how it applies to the area of kidneys and kidney disease.

In this episode, we spoke with:

Hannah Wesselman

Hannah Wesselman is a PhD candidate at the University of Notre Dame studying the genetic mechanisms underlying kidney development in Dr. Rebecca Wingert's lab. Prior to her dissertation work, Hannah worked with Dr. Larissa Myaskovsky at the University of Pittsburgh Center for Research on Health Care, and their collaboration continued as Dr. Myaskovsky moved to the University of New Mexico Center for Healthcare Equity in Kidney Disease. During this time, Hannah worked directly with kidney transplant patients, and later published in CJASN on social determinants and race disparities in kidney transplant. Inspired by the strength of the kidney community, Hannah has returned to bench science in the hopes of identifying new treatment targets and has continued to connect with kidney patients through NKF advocacy.

Holly Kramer, M.D., MPH

Holly Kramer, M.D., MPH, is a practicing nephrologist who conducts research connecting nutrition and kidney health. Her connection to the National Kidney Foundation was inspired by her mom, who was a dialysis nurse and helped create some of the first dialysis units in Northwest Indiana. Dr. Kramer finds being on the NKF Board important, because it is the largest, patient-centered organization focusing on kidney disease. Her long-term goal is to increase national funding for kidney disease research and to heighten awareness about chronic kidney disease.

Joseph V. Bonventre, M.D., PhD

Dr. Bonventre is the Samuel A. Levine Distinguished Professor of Medicine and Constantine L. Hampers Distinguished Chair at Harvard Medical School and Professor of Health Sciences and Technology at the Massachusetts Institute of Technology. He is Chief of the Renal Division and Founding Chief of the Engineering in Medicine Division of the Brigham and Women's Hospital. In addition to his B.S. with distinction in Engineering Physics from Cornell, Dr. Bonventre holds M.D. and Ph.D. degrees in Biophysics from Harvard University.  He has honorary doctorate degrees from Mt. Saint Mary’s College and from the Norwegian Institute of Science and Technology in Norway. He was Director of the Harvard-MIT Division of Health Sciences and Technology for 10 years. 

Additional resources:

Kidney Research

NKF Research Connect

NKF Patient Network

Become an Advocate

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!

Shared decision making can play a vital role in the treatment of kidney disease. When physicians involve patients in their care, they may be able to help slow progression and improve outcomes. In this episode, we discussed how patients and their physicians can achieve this and hear stories from patients who have been there.

In this episode, we spoke with:

Ansara Piebenga, parent of a child with kidney disease

Ansara Piebenga is the mother of two daughters. Her younger daughter was diagnosed at four months of age with a rare, genetic disease called primary hyperoxaluria. She received a year of daily (seven days a week!) hemodialysis and nightly peritoneal dialysis while being fed only through a gastric-tube.  Once she grew large enough (10 kilograms) she received a combined kidney and liver transplant at Stanford’s Lucile Packard Children’s Hospital at only 16 months of age.  Ansara's younger daughter is now a teenager who enjoys driving, playing lacrosse, and petting her three dogs.  Her daughter will celebrate 15 years with her transplanted organs this June and their entire family will thank her donor's family once again for their selfless and generous gift.  Ansara has mentored other families facing chronic kidney disease since 2007. She volunteers for Children's Mercy Hospital in Kansas City, the Medical University of South Carolina, the Improving Renal Outcomes Collaborative, Transplant Families, the National Kidney Foundation, the American Society of Pediatric Nephrology, and the American Academy of Pediatrics. 

Dr. Susan P. Wong, nephrologist

Susan Wong is an Assistant Professor at the University of Washington and a nephrologist and bioethics consultant at the Seattle VA. She leads a research program on treatment practices for advanced kidney disease with a focus on dialysis practices, conservative management without dialysis, and end-of-life and kidney palliative care. When she's not working, she enjoys spending her time gardening and with her 3 beautiful children.

Dr. Taylor House, nephrology fellow

Dr. Taylor House is a senior pediatric nephrology fellow at the University of Washington and Seattle Children’s Hospital, and she will be joining the faculty at the University of Wisconsin at Madison in the fall. She performs research focused on supporting the flourishing of children with kidney disease and their families through the integration of palliative care into routine nephrology care. She has a specific interest in improving communication between patients, caregivers, and clinicians surrounding kidney disease decision-making.

Elizabeth Fortune, kidney patient

Elizabeth Fortune was diagnosed with cancer in 2011. Two significant developments came from her fight with cancer. First, she and her husband started their own non-profit to support fellow cancer survivors and their caregiver. Second, she was left with End-Stage Renal Disease as a result of chemotherapy. She has been on dialysis since her diagnosis in April 2014.  She is a member of NKF's Kidney Advocacy Committee. She also enjoys knitting, reading, writing about her experience with cancer and kidney failure, and traveling with her husband. They also have the greatest cat, Mr. Meowington.

People with chronic conditions like kidney disease face mental health struggles such as depression or anxiety. In many kidney patients those challenges often go overlooked or undertreated. In this episode, we sat down with a mentor and mentee from NKF Peers to discuss their experiences and the importance of talking to someone who knows what you've been through.

In this episode, we spoke with:

Doris Lew

Doris Lew, a transplant recipient since 2016, just celebrated her six-year kidney-versary on May 12th. She received her kidney from a living donor after a year of peritoneal dialysis as a part of a ten-way chain. She was diagnosed with IgA Nephropathy and is continually learning about her kidney disease. She has two grown sons and currently lives in Oakland, CA, with her husband and two dogs.

Manusca Belony

Manusca Belony has been living with kidney disease since 2019 and has recently begun peritoneal dialysis. She lives in Massachusetts with her husband and two children.

Marissa Argentina, LMSW

Marissa Argentina is the Patient Programs Director at the National Kidney Foundation whose primary role is overseeing patient support initiatives to improve kidney patient outcomes. She has provided oversight to the NKF Peers program since 2017. Prior to joining the National Kidney Foundation, Marissa worked as a dialysis center social worker.

Additional resources:

More information on NKF Peers (You can also call 855.NKF.PEER or email us at [email protected])

Participant Form

Mentor Application

Episode transcript

Depression and Dialysis

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!

If you are in need of a kidney transplant, finding a living donor can sound scary and overwhelming. Where should you start and what’s the best way to share your story with the world? In this episode, you will hear from transplant recipients who once stood in your shoes.

In this episode, we spoke with:

Dorothy Muench, LCSW

Dori Muench is a post-transplant social worker with the Abdominal Organ transplant department with Wake Forest Baptist Medical Center for the past 5 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.

Gisela Delgado

At the age of 14, Gisela was rushed to the emergency room after having Coca Cola colored urine. It took 6 months of various testing to eventually be diagnosed with IgA Nephropathy via kidney biopsy. The doctors told her and her parents that there was no cure, no proven treatment and that this disease would likely lead to kidney failure in 20-25 years. This was very upsetting and also left the family with a lot of unanswered questions. At the age of 30, Gisela was then rushed to the emergency room with flu-like symptoms. The doctors flagged GFR and Creatinine levels. She was then put on a course of meds to help with Proteinuria and to treat high blood pressure. At the age of 38 Gisela reached end stage kidney failure requiring a kidney transplant. Luckily she was able to receive a pre-emptive transplant from a living donor (her brother). For those that do not know - a kidney transplant is still considered a type of treatment for kidney failure. Today Gisela is a huge advocate for living donation and volunteers with The IgA Nephropathy Foundation as their Director of Brand + Creative. She looks forward to being “in the room where it happens” as the foundation is working hard with several Pharmaceutical partners to not only finding treatment but a cure for IgA Nephropathy.

Morgan Reid

Morgan Reid joined the National Kidney Foundation as the Director of Transplant Policy & Strategy in November 2021. In this role, Morgan will implement strategies and help create policies that promote equitable access to quality kidney healthcare and transplantation. Before joining NKF, Morgan worked for two Organ Procurement Organizations and a well-known transplant center. She has a deep passion for improving organ donation and transplant processes. A dear college friend donated a kidney to Morgan on January 9, 2007, after several years of dealing with an IgA Nephropathy diagnosis with nearly two years on peritoneal dialysis. She will use her personal experience and professional expertise to advocate for underserved communities that face barriers to kidney transplantation.

Additional resources:

Information on living donation

Looking for a living donor

Kidney Donation: How to Make the Ask

The Top 3 Reasons People Are Afraid to Ask for a Kidney—and How to Overcome Them

5 Ways To Inspire Living Kidney Donation

Living Donation: Sample Letter to Family and Friends

Episode transcript

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!

From the invention of the dialysis machine to the first successful kidney transplant, science has come a long way in extending life for kidney patients. Is transplantation between humans and animals the next step? In this episode, you will hear from a doctor behind the first successful transplant of a human receiving a pig kidney and where the science can take us from here.

We dedicate this episode to the Parson Family, who made the selfless decision to delay their grieving process and permit the doctors at the University of Alabama to maintain Jim Parsons’ body functioning on a ventilator so this scientific and medical breakthrough could be possible.

In this episode, you will hear from:

Jayme Locke, MD, MPH

Dr. Locke is an abdominal transplant surgeon at the University of Alabama at Birmingham who specializes in innovative strategies for the transplantation of incompatible organs, disparities in access to and outcomes after solid organ transplantation, and transplantation of HIV-infected end-stage patients. Her research interests include complex statistical analysis and modeling of transplant outcomes and behavioral research focused on health disparities.

Dr. Locke is an Associate Editor for Transplantation and is a regular peer reviewer for several journals, including the American Journal of Transplantation and the Journal of the American Society of Nephrology to name a few. She is an invited member of the ASTS Providing Better Access to Organs Task Force and Diversity Affairs Committee, the AST Kidney-Pancreas Committee, The Transplantation Society Young Member Committee, and the United Network for Organ Sharing Pediatric Transplant Committee. Dr. Locke is the recipient of numerous honors and has most recently received the American Transplant Congress Young Investigator Award, the Birmingham Business Journal’s Top 40 under 40 Award, and was named one of AL.com’s 2015 Women Who Shape the State. 

Jessica Washington

Jessica Washington is an NKF patient advocate who was diagnosed with stage 2 kidney disease in 2019 after being diagnosed with a rare autoimmune disease. She works in the software industry as a Data Analyst and also enjoys freelance writing, in particular sports writing, traveling, and spending time with friends and family. She has been extremely motivated to advocate for the National Kidney Foundation to help others fight for better understanding, awareness, support, early detection and anything else she can do to make it easier for so many out there dealing with this disease.

More information:

How Genetically Altered Pigs Could Help Kidney Transplantation

Episode Transcript

Many potential living organ donors have questions, such as what does the journey look like, and how do you know if you are eligible to donate? If you are one of them, this podcast is for you. On this episode, our panel will share the first-hand experience of being a living donor and walk you through the evaluation process.

In this episode, you will hear from:

Tania Kasongo

Tania was born in the Democratic Republic of Congo and raised in Ohio. She is very passionate about health and wellness. She is a living kidney donor and donated her kidney in 2014 for her father. Tania graduated from The Ohio State University with a degree in Mass Communications and a minor in French. She works as an Events Marketing Manager for the American Chemical Society, and has her own event planning business, Yowa Events. In her spare time, she enjoys volunteering and is very involved in her community. She has volunteered for various organizations such as New York Cares, Ronald McDonald House charities, Nationwide Children’s Hospital, Habitat for Humanity, and many more. She is also a strong advocate for diabetes, kidney health, and organ donation. Other activities Tania enjoys are exercising, traveling, cooking, and horticulture.

Jennifer Bruns, LMSW

Jennifer is a social worker who has worked with kidney patients for the past 23 years in the fields of dialysis, transplant and inpatient care. Jennifer has also served on the executive committee for the Council of Nephrology Social Workers and she is a living kidney donor.

Miriam Goodwin

Miriam is the Director of Health Policy for the National Kidney Foundation (NKF). In this capacity, she helps to define and execute NKF’s public policy agenda with the federal government, working closely with patients, patient advocates, and professionals to ensure that public policy has the priorities of kidney patients at its center.  Prior to joining NKF, Miriam was a member of the policy team at Roche/Genentech, where she worked to shape the Prescription Drug User Fee Act (PDUFA) commitments for the PDUFA V and PDUFA VI reauthorization cycles.  Miriam earned her MPP from the George Washington University and a BA in biology from Earlham College. She is also a living kidney donor. 

Further resources on living donation:

General Information on Living Donation

How do I donate a kidney?

Infórmate Acerca de la Donación de Riñón en Vida para Hispanos/Latinos (Learn About Living Kidney Donation for Hispanics/Latinos)

For additional information, visit kidney.org/livingdonation. 

Some diseases run in the family, when more than one person has the same kind of illness passed down through genes. One of those genes, called APOL1, has variations that are linked to an increased risk for kidney disease, especially in under-resourced communities of color. In today's bonus episode, we discuss how a clinical research study is looking to understand the effect of APOL1 on kidney transplant outcomes from living and deceased donors, and why it's important for you to be part of this research study.

In this episode, you will hear from:

Marva Moxey-Mims, MD, FASN

Dr. Moxey-Mims is Professor of Pediatrics at George Washington University School of Medicine and Chief of the Division of Nephrology at Children’s National Health System, Washington, D.C.  Dr. Moxey-Mims serves as the Study Chair of the APOLLO Steering Committee and Chair of the Publications & Presentation Committee.

Jonah Odim, MD

Dr. Odim is Chief of the Clinical Transplantation Section at the National Institute of Allergy and Infectious Diseases (NIAID). Dr. Odim serves as a representative of the National Institutes of Health (NIH) on the APOLLO Steering Committee and member of the Dissemination Working Group.

Glenda V. Roberts 

Glenda is the Director of External Relations & Patient Engagement for the Center for Dialysis Innovation at the University of Washington Kidney Research Institute.  Glenda serves as a member of the APOLLO Community Advisory Committee, the Recruitment Committee, and the Dissemination Working Group.

Sylvia E. Rosas, MD, MSCE

Dr. Rosas is a nephrologist and epidemiologist at the Joslin Diabetes Center and the Beth Israel Deaconess Medical Center. Sylvia serves as the Principal Investigator of APOLLO Clinical Center 09 (Harvard University) and member of the Dissemination Working Group.

Krista Lentine, MD, PhD, FAST, FAST

Dr. Lentine is Medical Director of Living Donation, Co-Director of Clinical Research, and Mid-America Transplant/Jane A. Beckman Endowed Chair in Transplantation at Saint Louis University (SLU). Krista serves as co-Principal Investigator for APOLLO Clinical Center 03 (Johns Hopkins | SLU), member of the Data, Ancillary Studies, and Publications & Presentation Committees, and chair of the Dissemination Working Group.

Denay Richards

Ms. Richards and her family were born in the Caribbean when her mother was diagnosed with ESRD. They moved to the United States, where her mother was told that she had about 3 months to live. On August 29th, 2000, Denay’s father donated a kidney to her and in 2020 they celebrated their 20 year - “kidneyversary.” As a child, Denay loved helping her mother with the dialysis process, organizing medications, and attending hospital visits. It was this exposure to the medical field that encouraged Denay to pursue a career in surgery. In 2019 she graduated from Princeton University with a degree in Molecular Biology and as of 2021 is an MD/PhD student in a dual degree program with Robert Wood Johnson Medical School and Princeton University. In 2019, she earned a double board qualification as a fitness nutrition specialist and personal trainer under the International Sports Sciences Association. In 2020, Denay was diagnosed with an APOL1 mutation that is more prevalent in the African American community and has been linked to early kidney failure. Denay says that her diagnosis has empowered her to expand education about renal health, fitness/nutrition, and genetic predispositions for kidney failure to the world, especially disenfranchised populations that are at greater risk.

Genetics and kidney disease: https://www.kidney.org/atoz/content/genetics-kidney-disease