Nieltje Gedney is one of the many leaders in the kidney community hosting a session during the 2022 Kidney Action Week, a free virtual event taking place June 6-10. Nieltje is an American Kidney Fund (AKF) Ambassador and the executive director of Home Dialyzors United (HDU). Her session, "Home dialysis: What to know and what to ask," will be one of over 30 we have planned throughout the week. Nieltje spoke with AKF to tell us more about herself and give us a teaser of what to expect from her Kidney Action Week session. Editor's note: interview responses were edited for length and clarity.
You spoke at Kidney Action Week last year. For those that did not attend in 2021, what is the experience like overall?
I was very impressed with Kidney Action Week. During COVID, a lot of meetings were discontinued or switched to being virtual, and it was kind of hard. I felt like people on dialysis were being overwhelmed with webinars and meetings on a daily basis, and yet, a lot of them didn't pertain to our needs. Then, Kidney Action Week came around, and I was totally enthralled the whole week, which is unusual for me. I thought AKF did a great job with content. You pulled in the patients, you pulled in professionals – I honestly can't say enough good things about it.
You began working for Home Dialyzers United (HDU) in 2014. Can you speak a little about how you got involved with the organization?
After HDU's founder Richard Burkowitz passed away in 2013, it left the organization in some turmoil. At the same time, I started dialysis and had some questions, and just happened to find HDU. The rest is history.
It was really just timing. I was in the right place, at the right time. I asked the right questions, and slowly over the last seven or eight years, we've been rebuilding the organization into something I hope Rich is really proud of.
I just turned 70, and for the first time, I have the job of my dreams. Everything I've done throughout my entire life came together to allow me to run Home Dialyzors United.
You just mentioned that you receive dialysis treatments. Can you share your story?
When I found out I had kidney disease back in the '90s, I did everything wrong. I put my head in the sand, and I refused to acknowledge it. I did not want to learn about dialysis and had no intention of doing dialysis.
The irony, of course, is that when I did crash into dialysis in 2014, I was taking care of my mom. I really had just planned to "check out," but I couldn't because I had to make arrangements for her care. It was a lot of legal issues, so I told my doctor, "I'll just do dialysis long enough to get everything settled, and then I'll call hospice." And my doctor said, "You're going to do home dialysis." And I said, "What's that?"
I started home dialysis and began feeling really good. And you can't call hospice if you aren't dying. That's the only reason I'm here today. It was the luck of the draw.
Now that you have been through all of that, what is one thing that you know now that you wish you would have known when your dialysis journey began?
Facing dialysis was something that I wanted no part of. Every time I saw a nephrologist, they would send me to their dialysis clinic, and I felt like it was a PTSD moment. It was so terrifying.
I wish I had a different approach to education and learning more about it. Maybe instead of crashing into dialysis, I would have been more prepared.
I like to think of myself as a somewhat educated person, but in this instance, I absolutely refused. And I'm not alone in doing that. Sixty-five percent of us [crash into dialysis], and it is because we're terrified.
So, I think the number one important thing for anyone facing what is almost a terminal illness, is to face the fear. None of the rest matters. None of the treatment. None of the options. None of that is going to help or even get through to you unless you face your fear.
Do you have a favorite story about anyone you have met through your work in kidney disease?
Oh gosh, you know that's one of the beauties of my job: I have met so many inspiring people.
I mean, there's a woman in Rhode Island who has had four transplants. The last one really almost killed her, and I swear to God this woman has the most beautiful smile, and it never leaves her face. And when she does have a bad day, she apologizes for it.
I've also met a lot of people who've been on long-term dialysis and maybe aren't eligible for transplant but have had phenomenal lives and traveled all over. I think of another young woman who raised twins and an older son, and she homeschooled them all while she did dialysis. She started out in-center and then when she realized that home dialysis was available, she literally taught homeschool while doing her treatments at home. And as her children grew, she traveled all over the world with her home dialysis machine. Just an inspiration, you know?
The COVID-19 pandemic forced everyone indoors for essentially two years. During that time, did you see any significant increase in people wanting to try home dialysis?
There has been and, unfortunately, we also needed an increase in people available to train those people. It's been a lot harder to satisfy that demand. But yes, more people are realizing that they're safer at home.
I wrote an article early in the pandemic about the fact that for those doing in-center dialysis, it is a life-saving treatment. Yet every day that they go to that treatment, they're threatening their lives because of how they get there, the transportation, the exposure in the clinic — what a catch-22.
I am just so grateful that I did not have to face that choice. I could not imagine the stress of having to live like that on a daily basis, knowing that the treatment that I have to have to live could also kill me by exposing me to COVID.
I do not want to spoil your session too much but give me your elevator pitch. Why home dialysis?
Home dialysis for me means independence.
I have always been an incredibly independent person, and so I found it really hard with in-center dialysis to check that independence at the door.
The first time I wanted to change my schedule was when I had people coming to visit from Europe. We had plans, and I said to the dialysis center, "I can't do treatment this day," and they looked at me and said, "You can't do that." And I looked back and said, "Watch me." It just didn't compute.
So, obviously, home dialysis is important to me for the freedom and the independence.
It's not a perfect life. I do a lot more work involved with it, and it has some ups and downs, but I also feel healthier.
I'm nine years into dialysis, and I've experienced literally no hospitalizations that were dialysis-related.
A lot of times in-center treatments can be harsh on the body. Cardiovascular symptoms commonly develop fairly early on, and I've been able to avoid those until recently.
Those health benefits and my freedom and my independence are what have kept me going.
Finally, as you know, AKF and HDU are hosting a virtual summit on home dialysis options on September 15. I know that is several months away, but can you give us a little bit of information on what that will entail and who would benefit from attending?
Wow, I am just so excited that we're working together on it. It's going to be a wonderful day. We've got it planned from start to finish.
It's going to be uplifting. We've got some great dialyzers who will talk about their music careers and how dialysis has not kept them down. Then we're going to move on and talk about the various types of dialysis — peritoneal dialysis and home dialysis. But even more than that, we want to dispel some of the myths about how we live with chronic illness.
We're not just talking to people who are doing home dialysis. It's going to be appropriate for anyone who is even looking at the possibility of home dialysis or has kidney disease.
My favorite part is going to be at the end of the day. We're going to talk about all of the new devices that are in the pipeline. Never before, in all of the history of dialysis, have we seen so much innovation in technology approaching.
Our job at HDU is to make sure that this innovation and this technology reaches the patient. We want to make you aware of what's in the future, and I'm talking about the near future. It's really exciting. Then we're going to end with a happy hour. So, it'll be a little something for everybody.