Nieltje Gedney: And I would have chosen to die, except that I was taking care of my mother. And the second was the fact that the nephrologist in the hospital who saw me on an emergency basis told me about home dialysis. And in all the years that I had been struggling against CKD, kidney disease, no one ever mentioned that option. Those two things really saved my life. Christopher Springmann: That's our guest, Nieltje Gedney, a home hemodialysis patient and hero to many with kidney disease as an outspoken officer of Home Dialyzors United, an advocacy group committed to promoting innovative, accessible, and often individualized patient-centered dialysis treatments at home. Nieltje, welcome to NephTalk. It's wonderful to have you on the show direct from beautiful Hagerstown, Maryland?
NG: Yes, that's where I am.
CS: You've been performing home hemodialysis or HHD for over six years, yet you struggled with kidney disease for some 20 years. What circumstances or incident finally persuaded you to start home dialysis?
NG: Like the majority of patients, I crashed into dialysis with no understanding of what it meant. I had had the help of a dedicated family doctor who was able to control my kidney disease for almost 20 years. And during that time, I saw a nephrologist once or twice. And honestly, each time, they basically said if you don't start dialysis, in a year, you'll be dead.
CS: In other words, you were in dialysis denial. Is that correct?
NG: Absolutely. I did not want any part of it. So the two times that I did see a nephrologist, and they sent me to their clinic, that just actually put the icing on the cake. When I looked at the machines, I swore I would have no part of that.
CS: But you also had other distractions in your life. For example, you were taking care of your 95-year-old mother who had dementia.
NG: I did, and I took care of my grandchildren. And at one point, when they told me that I needed to start dialysis-- that was in 2007-- I just packed up and moved to Ecuador for a year. CS: Oh my goodness.
NG: Yeah, it was still seven years later that I crashed into dialysis. And I would have chosen to die, except for those two things-- that I was taking care of my mother. And the second was the fact that the nephrologist in the hospital who saw me on an emergency basis told me about home dialysis. And in all the years that I had been struggling against CKD, kidney disease, no one ever mentioned that option. So those two things really saved my life.
CS: Home dialysis patients frequently use words like home hemodialysis is my life support system. In essence, it saved their life, too. And best of all, I control it at home. Convenience, freedom, independence-- all those words come to mind. What are your thoughts?
NG: Well, that is true. I dialyze to live. I don't live to dialyze. I have made it a point to live my life as normally as possible. I call it my oil change. The few times a week that I do my dialysis treatment, it's when I relax. I kind of go into my zone. I totally chill out. And I am revitalized.
CS: You say-- and I love this quote-- that you love to pee. And even though I laugh, it's not a laugh line. In fact, it has everything to do with your ongoing success with home hemodialysis and the preservation of kidney function. It's really all about how you collaborated with your nephrologist and nursing staff to literally rewrite and personalize your home hemodialysis prescription. Let's talk about incremental dialysis and why you just love to pee.
NG: There is an optimal treatment for every dialyzor. And it truly is up to you and your medical team to find it. I don't ever want to hear the words you're on dialysis, so just deal with it. I don't believe that that's what they need to expect. They are entitled to the best quality of dialysis and life that they can possibly achieve.
An incremental dialysis is just one of those ways that home dialysis can be prescribed. The important factor is to study and understand every detail of your monthly labs and adjust your treatment accordingly. It's not a static, one-size-fits-all prescription. And it's critical that you work with your team to develop this. And I learned by accident.
CS: It's very interesting and very persuasive that you would say that. I'm quoting an article that appeared in the Continuing Nursing Education journal by Patricia Patterson, an excellent writer who really captured your spirit.
She said that since patients on home hemodialysis are performing all treatments when keeping track of vital signs, trends, and tracking for the body's performance to each treatment, the best practice is to include and regard the patient-- that's you-- to regard the patient as an active, knowledgeable member of the interprofessional or interdisciplinary team. What are your thoughts about that?
NG: Well, that is absolutely critical to successful dialysis. During the training process, you have to learn two things. The first one is the dynamics of the machine, the mechanics. The second one is that you have to learn how to do dialysis. And to do that, you need all the tools. What I tell professionals is to look at us. We're actually doing the same job that the clinicians are doing in center. We need the same tools.
So we need to understand all of the dynamics of that dialysis treatment and have the freedom and understanding to adjust that treatment the way they would if you were in center at home. And that means changing your fluid, removal during treatment, changing your blood flow, any number of the dynamics of the machine. And changing those dynamics can change the benefit of your treatment.
CS: In many respects, you're a sole proprietor.
NG: Exactly.
CS: You have a home dialysis center of one.
NG: And everybody says who does home dialysis it's like a second job. So you have to weigh the risks and benefits.
CS: In fact, you suggested in an interview in the Washington Examiner, it's just kind of like brushing your teeth in the morning.
NG: Exactly. And that's what it's become. It simply is part of my daily routine. When I get up, if I have to do some of the mechanics of the machine. I usually try to do my treatment at the end of the day after I've done all my activities. And as I said, that's my chill time.
CS: When or how did it occur to you that by cutting back on home dialysis treatments essentially by reducing the time you dialyze that you might avoid painful cramps, hypotension, and exhaustion?
NG: Well, actually, it was very early on. When I first started dialysis, I had to do in-center treatments while I was waiting to initiate the training for home dialysis. While I was in center, I experienced horrific pain, burning pain. And it was about at the three-hour mark of a four-hour treatment.
Well, I found out that I could sign myself out early from dialysis. And I don't do pain. That is a policy of mine. I'd sign myself out as soon as the pain started. But after the first month, my nephrologist came back and said, my labs were so good that he was going to cut my time to two hours and 45 minutes.
The other thing that I noticed was that especially after I started doing home dialysis, the less dialysis I did, the more I peed. While conventional wisdom says that the majority of patients should do more dialysis-- and I firmly support this-- the problem is that when you still have residual function, it's a balancing act. You have to balance the nutrients and toxins that your urine is removing, as well as what the dialysis is removing.
And if those aren't balanced properly, then you don't feel well. Your treatment can be too intense, such as was happening to me. That in turn can then destroy the remaining function of your kidneys. I just knew that less dialysis at the time was giving me more residual function. And to do that, we had to monitor my labs very closely.
CS: So does that mean the dialysis process does not have to work as hard because there is less waste to process and remove, therefore you can cut back on the amount of dialysis and ultimately have a better quality of life? Is that a fair conclusion?
NG: Exactly. One of the things that we say is you use it or lose it. If you have residual kidney function, it's kind of specialized. Some chronic or genetic diseases automatically predispose you to losing your kidney function.
But for other people where there may be an unknown cause, it could be an acute kidney injury, where you just don't know, if you have residual function, and don't use it, in other words, like you depend on the dialysis to do the cleaning, not your kidneys, then you lose it. And once you've lost your residual function, that's a whole quality of life that you'll never get back until you have a transplant.
CS: You are the treasure of Home Dialyzors United, better known as HDU. Let's discuss a three-year study that you're participating in designed to identify barriers in home hemodialysis that cause an alarmingly high patient drop-off rate.
NG: Well, surprisingly, about two years ago or a little longer, several of the dialysis companies approached us at HDU and were wondering why patients were leaving home dialysis. They were literally training two patients to keep one on HD.
So anecdotally, we felt that there were two main reasons. But based on-- we're an organization that is boots on the ground. So we hear from the patients on a daily basis through our social media. We can pull together a lot of anecdotal information.
One of those is medication management. And a second one-- and this is really key. And this has just been supported in a recent study by Eric Weinhandl and that is in an article for Healio, "Strategies to Optimize Patient Retention in Home Dialysis." He's a phenomenal researcher and had discussed very often the second reason why we think patients are leaving dialysis, home dialysis.
And that is that I would hazard a guess that most patients are not properly prescribed their prescription, nor is it changed or adjusted as needed. So it's a one-size-fits-all mentality for in center and for home.
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We know what works. We know what makes us feel better. And we have the confidence to do so. They need to have the tools, the knowledge, and the ability to understand this and then work with their team to make those adjustments so that their treatment is optimal, not just adequate. It's not just achieving an arbitrary number. It's about having a treatment that really feels good.
CS: Thank you, Nieltje, for joining us today on NephTalk. It's been a joy. And you are a passionate patient advocate for Home Dialyzors United. NG: Thank you, Christopher. And it's been such a pleasure to be here and to talk about my favorite subject.
CS: [LAUGHS] Well, you are relentless but for a very good cause.