What's the Deal with Dialysis?
A conversation about the kidneys and what happens when they fail.
What's the Deal with Dialysis?
Episode 5 with David: Uncovering the Emotional and Practical Realities of Dialysis: A Guide to Navigating Treatment and Resilience
Discover the unvarnished truth about kidney dialysis as social worker David Baptist joins us to share his profound insights into the emotional labyrinth faced by patients. In our candid discussion, David peels back the layers of adjustment, loss, and mental health challenges that accompany a life tethered to this lifesaving treatment. Learn about the essential resources that can help patients anchor themselves amidst the stormy seas of change, including transplant programs, insurance navigation, and understanding social security benefits. We also share heartfelt stories, like that of a young individual's struggle to come to terms with their new dialysis-dependent existence, which illustrates the critical need for compassionate support systems.
Then, step inside the dialysis center's doors as we demystify the treatment process itself. We shine a light on the scenarios that can abruptly place patients on this unexpected path and the stark reality of waking up with a tunneled catheter. With the aid of educational resources and the guidance of healthcare professionals, we explain the intricacies of dialysis care, including what happens during a session and the commitment it demands. This conversation is not just a lesson in the mechanics of dialysis, but a testament to the resilience of the human spirit when faced with life-altering circumstances. Join us for a journey that is as informative as it is inspiring, one that promises to connect you with the heart of what it means to live with dialysis.
With hosts Maurice Carlisle and Ira McAliley
What's up? Wonderful people, this is Ira McAulay, back for another installment of what's the Deal with Dialysis, here with Maurice Carlisle, kind of the heart child behind this concept of educating folks and digging into the industry and the practice and all that goes along with kidney dialysis. And you know, we're just trying to shed light and add value to people's lives and make the process better for for patients, for their families, for friends who love those folks that are going through it. And today we have a wonderful guest who's a social worker. His name is David Baptist and he is gracing us with his presence and knowledge and we'll get into a nice little conversation about what he does. He has a nonprofit that's called High Desert Kidney Hope and we're going to get into that a little bit. But, david, welcome and happy to have you here.
Speaker 2:Thank you.
Speaker 1:Yeah, welcome. David, I'm glad to be here. So, first getting into it, give us a little bit of background just on yourself and kind of how you got to the kidney dialysis world as well as just being a social worker.
Speaker 2:Yeah, and I got my master's degree about 15 years ago and was working for a company that's an HMO called Scan Health Plan, still around, kind of getting into medical social work. But like most people, I had no idea what dialysis was. I just knew that this health plan did not accept people on dialysis. That's the extent of what I knew about dialysis. But as time progressed and I got more into the field, an opening came about a dialysis center and they needed a person with a master's degree in social work. So I got into it, started from scratch, didn't know anything. Great website for people to know about is KidneySchoolorg. It has these modules. It takes probably like eight hours to go through but full education on dialysis, the roles of dialysis, kidney transplant, different modalities, super educational. Recommend anybody go in and do that. So I kind of took that as a crash course to learn as well as getting into the dialysis center itself and really understanding what it was.
Speaker 1:Great. And so, since you've come into the dialysis world and you know you have retraining, explain just a little bit about your day-to-day and what your role is in the process of a patient getting, uh being on dialysis.
Speaker 2:So it's mostly adjustment, as getting somebody used to this whole new life. We expect somebody to be overwhelmed, not wanting to do it but knowing they have to do it to live, to be active, facing that choice, totally overwhelmed, all this medical jargon being thrown at them, these machines that when you walk in you're like feeling this sci-fi, alien spaceship kind of aura about you, like all these people plugged into machines and you wonder like what the world's going on. So just kind of going with them, trying to normalize this medical process, make them feel comfortable with it. That's the first thing. So I guess it's getting the shock and then it goes more into like the losses they're feeling. So they're going through this huge loss because whatever they were doing before and whatever plans they had for their future, their physical abilities, their jobs, their relationships, all of that has in some way been impacted or totally taken from them all together. So you have this huge loss and with that comes sadness, depression. So trying to get them to kind of reframe how they look at life and what the value is especially for men, I think, because we put so much value as men into our bodies and what we're capable of doing and being strong and it is for women too, because they're like the anchor of the family and their roles interrupted and everybody's caring for them now instead of them caring for others. So each person has their own dynamic and what they've lost and what they're going through.
Speaker 2:So first trying to help them through the shock, then trying to help them through the loss and meanwhile trying to get them connected with any kind of programs out there. First and foremost, transplant programs. Get them hooked up with a hospital that could do a transplant, explain to them the process. Trying to get them hooked up with some kind of insurance coverage, because if they were working and their job is through an employer, like picture right now, you can't work, you lose your benefits, cobra lasts what? Six months, and then what? So trying to get them that benefit, some kind of way of earning income, social security, disability, different county programs, medi-cal, food stamps so trying to replace those immediate needs while they're going through this loss and they're trying to get adjusted to a new life. It's a lot at first. It probably takes somebody at least six months to feel like they're settling in. Wow.
Speaker 1:That sounds fairly traumatic and just to be to just let everyone know, you're in California and Maurice is in Ohio. I'm in California but just for you know just kind of context of where we're at. But in that sounds like there's like a lot of in that trauma, just mental health stuff. Before we got on here, maurice was talking about a patient that was going through. So Maurice, talk a little bit about that. It's like what has happened to this one patient that you're talking about?
Speaker 3:Yeah, so you know fairly young patient, you know early 30s, and he's currently just starting dialysis about the last month or so and just having a really difficult time adjusting. You know didn't seem like that at first. Like came to his treatments at first, was very kind of, you know, personable, and you know like a really nice young man, and you know I'm sure he is. And now after about three weeks of that, he's starting to kind of revert into something. He's starting to, you know, start to have that anxiety and stuff. And so the last time that he had treatment he didn't show up to treatment and then when the nurse talked with him it was that he just couldn't physically get himself to come into the center to have treatment.
Speaker 3:And so you know, we see different forms of that and I've worked with the social worker and many clinics that I worked in before just trying to identify those things. But then you know, sometimes patients don't want to talk about it. They don't want to, you know, they kind of don't want to address it and they keep denying that. You know those issues even exist. And so you know, even if they do go over and have some kind of conversation with the social worker, they're still kind of lacking in that information. And, you know, one of the things I wanted to ask David about, just like in discussing this, is that you know, I wonder if we see patients coming to the center more educated, now that we have all these you know, tools, we have the internet and we have, you know, youtube, where you can go to YouTube and see, you know, people having dialysis and stuff like that. You know, david, like I wonder, are you seeing patients come in more informed or does it seem like they're still, you know, without information?
Speaker 2:Yeah, definitely, and I see a variety and I know you and I have talked, maurice, before about the people coming to dialysis and being prepared, going over diets and stuff. Those people who've been seeing their nephrologist, who've been having that conversation of what's coming and being prepared, tend to go and look on the internet. What is dialysis? What is dialysis? Learn what it's about. Then we have probably about a third of the people that we get who just end up in the ER and suddenly they have this tunneled catheter in their chest and they're getting dialysis. So those people don't seem to know as much. Thank God there are those videos available that people can learn about it. So if they have time in their hospital bedroom as they're getting dialysis, they can look up what a center looks like and different roles and what people do, what it's about, how long it lasts. I'm still surprised that a lot of people come into the dialysis center and say how long does this treatment last?