Elliot and Maurice: A Journey Through Dialysis and the Quest for Compassionate Care

When my friend Elliot Markmen's life was hijacked by kidney disease, he didn't expect the twists and turns that would lead him through the harrowing landscapes of dialysis and onto the hopeful path of transplantation. This episode welcomes Elliot alongside Maurice Carlisle, a committed dialysis technician, as they unravel the tapestry of experiences bound to the life-altering world of kidney health. Their stories, fraught with challenges yet rich in resilience, paint a vivid picture of the patient's and practitioner's journey—offering a rare glimpse into the personal battles and triumphs within the sterile walls of dialysis centers.

Through the intimate recounting of my emergency scare, we confront the stark realities of a treatment that is as life-sustaining as it is physically demanding. The conversation turns critical as we scrutinize the profit-focused motives shadowing some dialysis facilities, calling for an overhaul in the way care is delivered. Maurice's perspective illuminates the emotional weight carried by healthcare workers, while Elliot's narrative underscores the immense value of empathy and clear communication in patient care. This episode doesn’t just share stories; it ignites a crusade for a revolutionized and more humane approach to dialysis that honors the spirit and strength of those it serves.

A conversation about the kidneys and what happens when they fail.

Transcript

Speaker 1: 0:15

What to deal with dialysis zoom, and I guess we could call it.

Speaker 1: 0:20

Let's just start with the conversation and opening up something that hopefully is going to grow in the future to be able to bring technicians and patients together and to help families and to help people understand what's to deal with dialysis.

Speaker 1: 0:38

So today we have Elliot Markman, one of my oldest friends on the planet I know man, it's very true and someone who I love dearly, who has been dealing with some medical issues throughout his life which he'll talk about, I'm sure, and just how it has developed and how his kind of medical history has kind of progressed to being on kidney dialysis for a while and then having a transplant, and we'll discuss those things but also our guide and our guru, maurice Carlisle, who was a dialysis technician in Ohio and we'll get that story out as well, but this is his passion. This is someone who was in dialysis centers for years and being affected emotionally by how the industry treats their patients and how the industry puts people into situations that aren't necessarily favorable, and we're going to shed light on those that are doing it well and those that aren't doing it so well and come together and hopefully help some people out.

Speaker 2: 1:54

So, without further ado, maurice, Well, thank you, I really appreciate that. So just to bring you up to speed, and what we're doing here is sort of like narrative medicine, and what we want to allow people to do is tell their stories. Today it's Elliot. He's going to share things with us that you know can help families and patients deal with this disease of you know, end stage renal failure, and it usually catches people off guard. For Elliot, you know, from what I understand, he had some time to kind of figure out what was going on, but we'll get his story out, and so it's just about, you know, letting people understand what's happening to them, and this is our attempt at doing that and we'll continue to do that. It's just the first episode of that journey, excellent.

Speaker 1: 2:46

So, elliot, give us the like, the quarter tour of life, how you have come to the dialysis part of, or just the kidney, your kidney history. Yeah, I mean bottom line.

Speaker 3: 3:02

I doff my quarantine. Chapeau to you guys for doing this. And yes, you know I had the benefit of well, it's a double edged sword but I had the benefit of about 50 years of kidney disease to manage before it needed dialysis. So I did have time to see, okay, where was this going? It was pretty much always going to head towards dialysis and it was due to a genetic defect in my ureters, meaning my ureters were at two way street, not a one way street. So basically, the reflux that would occur because of that would destroy kidney tissue, thus destroying the ability to create urine to filter blood. The surprising thing for me that led to dialysis was that I got the ability to create urine never stopped, which and I'll get to that part of the dialysis equation but every patient is different in dialysis and every patient deals with it differently in dialysis and that's where things get complicated. But anyway, I finally reached the point where the creatinine was way too high and I was going to have to start all the surgeries to prepare for dialysis. I did personally, I did both surgeries at the same time, meaning the chest catheter and the fistula in the arm at the same time.

Speaker 3: 4:49

I think one of the things that dialysis facilities can do better and nephrologists can do better is to explain those procedures and try the best they can to not minimize them, because they are not easy surgeries and they are scary. It is not pleasant to see your body change, not only with the catheter which can come out, but the fistula alters your body and it does it permanently. And so I think sometimes when they're pitching the best ways to do dialysis, they gloss over the fact that your own mental picture of yourself is going to change and that emotionally and psychologically that's something that needs to be dealt with because your arm does change. It is not normal to have an artery in your arm because it swells and it bruises and things happen to it during the course of dialysis. I always have to say that when people ask me about dialysis and the people that work there, I always say lab technicians are when they do their job. In my opinion it's part medicine but part art, because basically to get a needle the size of a knitting needle into someone's fistula is part art, because it's not for the faint of heart and it needs to be done quickly. It needs to be done well, otherwise lots of problems can happen. But I digressed a bit from yes, those surgeries take place. You then are ready for outpatient dialysis.

Speaker 3: 6:57

My situation was more complicated because my particular dialysis institution kind of dropped a ball of it with my nephrologist and they didn't start me in time and so I woke up one morning and couldn't walk, couldn't move, had my wife rush me to the hospital and my creatinine was 14. And they had to admit me and do emergency dialysis, which was frightening. But these dialysis places, they are okay, maybe back up Dialysis. The main problem in the dialysis that happens in dialysis, excuse me, is first and foremost it is a profit garnering system. Okay, that has built in problems right off the bat between nurses, techs, patients. I've seen it happen. I've seen it happen with drug administering.

Speaker 3: 8:11

The other problem with it is what they don't tell you about dialysis that it is a necessary evil in that it keeps you alive. I will forever thank my dialysis techs and nurses for keeping me alive. But what is unspoken by everybody except the patients? Because we talk about it, because we know what's happening, you die a little time every single session you do. That machine is designed to do one thing pull your blood out of your body multiple times, clean it, put it back. Your heart's job it's one job is to keep its blood in the body, so that machine and your body are fighting for three and a half to four hours, three or four days a week. That takes a toll. I think there needs to be a little more sensitivity to that, even from just the way it looks. I'm a visual arts person, but if you go into some of these places, it's this open zone where everyone's just sitting there plugged into machines. It's very antiseptic.

Speaker 1: 9:32

Really quickly. Elliot, Given all that, your perspective, you have a perspective that comes from number one, just being aware of yourself and also just being aware of the world and putting your situation in a fairly logical place in your life. But for those people and there's a lot that, just like I mean, you wound up waking up and having to go to the emergency room. A lot of people wake up in the emergency room. Yes, they have no idea what has happened to them. So, given that and given the environment, do you have any? I mean, you're starting to talk about it, but just like, what would you say could be done to make that process easier for those who don't have what you have in terms of just being a self advocate?

Speaker 3: 10:33

Well, that word is the most important word which I was going to get to, which is you have to be aware of yourself and your situation.