Nieltje Gedney: A Passionate Kidney Advocate Who Will be Missed

I don’t recall meeting Nieltje 9 years ago, but once I did, she was one of those people who seem like you’ve always known them—an instant friend to many. It wasn’t a complete surprise when she passed away on September 21 after 3 months of severe health problems, but, oh, what a loss to the whole kidney community and all of us who knew her! Our organizations are partners—Home Dialyzors United is a membership group focused on patient advocacy, while the Medical Education Institute is a resource non-profit that develops evidence-based patient education and tools. Nieltje used our ultrafiltration rate calculator at every treatment and loved our My Kidney Life Plan treatment matcher.

Hilarious, smart, articulate, and absolutely committed to helping her fellow dialyzors live their best lives, Nieltje had an amazing ability to stay on top of everything that affected home hemo—I was never able to scoop her! She loved global travel and great food, and we had a tradition of sharing wonderful meals at all of the national meetings. We collaborated on many projects: CMS comments, conference panels, a booklet about lifestyle with dialysis, Home Dialysis Central e-newsletters, a solo home HD section for the website, 28 KidneyViews blog posts… Working with Home Dialyzors United (even before she became their Executive Director), she advocated with the U.S. Department of Transportation to make air travel easier for people with PD or HD cyclers, and updated our travel guide.

NIeltje had the rare ability to break through the confusion of a difficult diagnosis and cut to the chase of what really mattered: how well—not necessarily how long—she could live. In case you missed it, here is how she described it in an email to me:

“When I learned my kidneys were damaged, I took every precaution I knew of to extend and protect their life. Simple things most nephrologists won’t tell you about, such as reducing protein intake, and taking sodium bicarbonate worked wonders. 

Ten years later, when my kidneys had deteriorated further, I was told to get a transplant or start dialysis or I would not see another year. I chose to pack up and move to Ecuador for 6 months! Seven years passed, and I took advantage of every opportunity to travel, spend time with the grandkids, and live each day to the fullest. The last year was a bit rough. I was now taking care of my 90-year old mom, who was in her happy place with dementia. At a checkup with my doctor, he said to my mom, who drank like a fish and smoked like a chimney all her life, to keep up the good work—she had the labs of a 50-year old. Then, he turned to me, and said, “the last time I saw labs this bad, the patient was in a coma”. I knew my days were numbered.

When I crashed, during treatment for bronchial complications, they brought in a renal consult, who, for the first time in 20 years, told me I could live a normal life on dialysis, in fact, she said her sister had for the past 20 years and travelled the world doing it. I didn’t believe her, but it was worth a shot—my only shot. In the hospital, I had my first fistula surgery, a temporary chest catheter placed, and my first treatment. It was all a blur. Essentially, I started the entire process of dialysis with my eyes closed, in part due to what I now call Kidney Brain. As kidneys gradually fail, you don’t realize how slowly your life slips into a fog.

Upon discharge, I reported to my local dialysis clinic, and started treatments, 3-4 hours a day, 3 days a week. The clinic knew I wanted to do home dialysis, and as soon as my fistula was ready, I started training. I won’t lie. It was intense, tiring, and overwhelming at best, completely terrifying at its worst. But my strong need for independence was even more compelling.

Never did I ever expect to feel better on dialysis, but after the first month, I looked and felt 10 years younger. When I returned to my consulting nephrologist after 3 months, she didn’t recognize me.

I have talked to many other dialyzers, who all say the same thing. At the end, just before starting dialysis, kidney brain takes over. So, unlike me, I would tell anyone facing kidney disease to learn about your options very early on, before the complacency of kidney brain sets in. That’s not the time to try to understand the various treatments, because you won’t be able to absorb or remember it anyway. If you have someone who can go with you as your advocate, I would recommend doing so, as the information is often too overwhelming to comprehend, while in late-stage kidney failure. I didn’t.”

A few other email gems from Nieltje:

• “Self care is critical to patient success. An engaged patient is a healthy patient. Encourage your patient to become an active member of the health care team. Solicit their feedback. Ask them how they FEEL! Labs and numbers are meant to guide you, but relating them to how you feel is critical. Some people can function great with a hemoglobin of 9, others are one step from a coma. Iron levels and TSATs are critical to normalizing breathing and ability to do daily living activities. DO NOT TREAT YOUR PATIENT like an algorithm or a protocol. These are guides, and should never be written in stone.”

• “Self cannulation is a must, unless there is a significant reason not to. I know of someone who is almost blind, and cannulates, and another who has almost no fingers, and still self cannulates. Dominant arm is an issue, but can be overcome. Self cannulation preserves the fistula and provides more stable treatments and needle positioning. Only you can tell when/where that needle is right. Even now, I may have an off stick, and it is a pain. A good stick and you’ll never feel a thing.”

• “Can a patient treat alone? Absolutely. I trained by myself—I did not want anyone responsible for my care but me. I understood that in the beginning, there was a need for someone to be nearby, in the event of an emergency. But as my confidence and competence grew, this was a non-issue. In fact for me, having someone present is a distraction, and actually contributed to mistakes, not alleviated them. I understand the risks. Carried to the ultimate conclusion, something totally off the wall happens, and I die at home during tx, for whatever reason. I am where I want to be. I do not want to be in a chair in center, in a hospital. So that risk for me is a no-brainer. I won’t care if I’m dead. You, the doc, can sign off on a patient to treat alone and I urge you to do so, after discussing all the ramifications with your patient, and when they feel confident enough to do so.”



• “Doing my treatments on my schedule allows me to lead a fulfilled life, doing what I need to do every day, and ending it with a relaxing treatment before bed, when needed. I do not plan my life around dialysis, I fit it into my life as needed. It is a treatment; a med to be taken, one that happens to keep me alive and kicking.”

• “Requiring a care partner when/where none are needed is discriminatory, arbitrary and capricious in my opinion, and only acts as a deterrent to a patient’s best interest, and ultimately best outcome. When needed, or if a couple prefers, they can determine individual roles as they wish, but it should be strictly voluntary. Also, the patient should/must be required to participate 100% in his treatment—to know how to do it—even if they decide to share the burden. What happens if the care partner collapses? The patient is left vulnerable.”

Nieltje was a member of our Home Dialysis Central Facebook Discussion group for years, and reached out to help a number of folks. Here’s what some of them said:

• “Nieltje’s insights into anemia management helped me to change nephrologists that eventually led me to kidney transplant after having survived a liver transplant that caused my kidney failure. Her overall knowledge into connecting the disease with patients’ needs was certainly God’s gift. She actually led us to living better lives. An Angel of Advocacy for all of us suffering with the disease. Her Legacy will be very powerful.” Full of Love, Tom Nord.

• “Three years ago my dialysis journey started. I went on Home Hemo right away - 5 days a week. Then, I happened to read Nieltje’s post on precision or incremental dialysis. I contacted her and she was a well of information. I used her detailed info and learned so much from her - inspired by her experience I went with nephrologist support down to doing dialysis 2 times a week. My labs were good including great Kt/v. That is now 3 years ago and I am still doing treatment 2 times a week. This may change in time but it has meant a lot more free time and I have Nieltje to thank for that!  Nieltje was an inspiration!” Annika Gruenn

• “I believe Nieltje Gedney joined this group right after I did. I may be mistaken, but back then she was in the midst of battling her clinic to do solo treatments while being her mother’s full time caregiver. I believe she may even have been forcefully discharged from that clinic and left without any backup? Her tenacity and refusal to take no for an answer made a BIG impression on me then and really helped us get over the fear of questioning protocols and being labeled non-compliant. She also went out of her way to hook us up with some direct contacts at NxStage when we were having issues with Rx and machines that Frank’s clinic wouldn't or just couldn't take the time to help with. Her work with Home Dialyzors United was inspiring and has been responsible for helping remove many of the obstacles that kept whole populations of people from doing dialysis at home in the past. I am always very sad when I see members here have passed, but also have to take solace knowing that Nieltje went on her own terms.” Beth Dykman



• “Nieltje and I connected across the ocean first as fellow home dialysers and then also professionally through HDU, working with one of my clients over here in the UK. I’m so sad we never met in person, but even through a screen, she was a force of nature. Her positive spirit, absolutely tireless passion for advocacy and for refusing to accept the status quo, thereby helping countless others, was nothing short of inspirational and while that word gets thrown around a lot, it truly did apply to Nieltje. She also had a wonderful smile, a twinkle in her eye, and we always had such a giggle when we spoke, plus shared a huge love of horse-riding. To say she’ll be missed is a huge understatement.” Maddy Warren

• “Nieltje was a pioneering advocate for patient-centeredness, championing advancements from home dialysis to precision and incremental dialysis. Her legacy will forever be cherished." Kamyar Kalantar-Zadeh, MD, MPH, PhD

• “When I first joined some of the dialysis groups, then especially when I started home hemo and joined the home groups, one name soon stood out. Nieltje always had and shared great information. When I posted a rant about the RedSense, Nieltje offered to share my concerns with the company. Although I was done with them, I was impressed that she offered to help. It wasn’t long before I discovered she and I had much in common and we joked that we were dialysis twins. Seems we were on parallel paths. I learned so much from her. I admired her ability to travel with all the dialysis equipment, something I’ve only attempted a couple times. Her death has hit me hard. I’ll miss seeing her weighing in on so much. Her fight for proper anemia management and incremental dialysis were inspiring. She’ll be missed by so many.” Linda McKenney

• “I only got to meet Nieltje once in person, but I will never forget her. She was a force for good, going out of her way to share and support home dialyzors.” Gayle Hall, BSN, RN, CNN

• “I always wanted to meet Nieltje. She always seemed to be happy. Several years ago we were discussing something and she said, ‘I hope you don’t think I am being quirky.’ Now whenever I hear that word, I think of her. She will be missed.” Carol Carpenter Murphy

• “She reached out to everyone who was in need! She was a voice for those who didn’t use their own voice! She was amazing!” Gail Schubert DeWald, BS, RN, CNN

• “Although I don’t have a close personal connection with Nieltje, I’ve always found her to be incredibly helpful and enthusiastic. The most recent example was when Nieltje, as she always does, generously offered her time and expertise and provided me with a comprehensive list of Medicare codes that proved invaluable in resolving my situation when I faced unrealistic travel protocols imposed by my center’s administration. Nieltje taught me how to advocate for myself with the true, real codes. Her absence will be profoundly felt. She will be greatly missed.” Frances Liu



• “One of the first times I had dinner with Nieltje (and everyone else), I had an involuntary arm spasm and literally chucked a T-rex sized BBQ rib directly across the table at her. She laughed hysterically. It wasn’t even mortifying after that, it was just SO funny. And, her laugh was contagious. This is a core memory for me, and makes me smile even now. Much love to all.” Jenn Ravert, RN

• “Nieltje was the best. I miss her terribly. She was an incredible human: honest, irreverent, warm, compassionate, as the Finns would say she had Sisu! She persevered beyond what was that possible almost every day. I found this group and the Home Dialyzors United group quite by accident. I did a Google search and ended up on their website which brought me to their group and she also suggested this group to me several years ago. I had a lot of questions, a pile of research, and had my medically complex son crash into hemodialysis. I have never seen an advocate like her. And I was blessed to be taken under her wing because I had never done advocacy around anything kidney…she was patient with my questions, introduced me to so many of you. In 2022 at a conference I got to meet /speak with Dawn Edwards and meet Nieltje in person. I was so excited to take a picture with them, I forgot to take my mask off! Over the past several years, no matter what happened, she would brainstorm with me and I with her. She and Jamie had several similar difficult paths. When Jamie passed in July, she was one of the first to call me and check in, even though she was facing her own battles. She was happy that Jamie got to live and die on his own terms. As sad as I am, I have peace, knowing that she was able to pass on her own terms. So very grateful for the friendship and the knowledge she shared. I will miss our weekend coffee calls. I can only imagine her and Jamie on horseback on the other side! She was constantly thinking about all facets of everything kidney and how to make things better for patients and Clinician/ Patient communication. She constantly researched topics and helped so many find their voice. She networked people and services with ease. I was always in awe of all she had to deal with regarding her own health, yet she would still lug that equipment to the airport and flew somewhere to advocate, on behalf of us all. So many have said the best way to honor her legacy is to advocate in your own way. And I believe that wholeheartedly.” Lisa Burgess

• “Nieltje Gedney was amazing and immediately offered up suggestions when our daughter first started on home dialysis. Also, when we were having issues. She also cheered when our daughter got her transplant. The world lost an amazing person. Like my mom said when she was alive, ‘May she be dancing with the angels now.” Bruce Blythe

It’s pretty tough to improve on “may she be dancing with the angels now,” so I will remind folks that they still have opportunities to learn from the many resources Nieltje left behind, from blog posts to YouTube videos (just search for her name). She donated her body to science, and a memorial service will be held on Saturday, November 18, in West Virginia, and online (TBD). Please leave YOUR memories and thoughts about Nieltje in the comments below if you will miss her as much as we already do.