Cultivating Hope and Precision in Dialysis Patient Relationships

When Jeffrey Butler stepped back into his garden, shears in hand, ready to cut the grass after months of feeling too weak, it was a moment of triumph over his dialysis struggles—a journey I had the honor to be a part of as his former technician. Our latest episode invites you to witness the powerful story of Jeffrey and his son Jerry, as we delve into the delicate balance of dialysis patient care. Through our discussion, you'll understand how precise adjustments to treatment can profoundly impact a patient's quality of life, as well as the critical role of patient advocacy in navigating healthcare complexities. Jeffrey's sincere appreciation for the guidance that empowered him to take control of his health and share his knowledge with others is a testament to the deep bonds that can form between patients and those who care for them.

The heart of healthcare lies in the personal narratives of those it serves, and this episode doesn't shy away from confronting the challenges they face. You'll hear from Allison, a patient who suffered from incorrect machine settings, and the ripple effect her experience had on policy changes within the dialysis clinic, ensuring a higher standard of patient safety. We also tackle the tough conversations about the intersection of healthcare compensation and patient well-being, dissecting how these factors can influence treatment goals and outcomes. Join us for an eye-opening exploration of what it means to be a partner in care, and how advocacy, education, and genuine compassion are reshaping the experiences of those who depend on dialysis to live fully and vibrantly.

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

Transcript

Speaker 1: 0:26

What's up, beautiful people, this is McAliley here for another edition of what's the Deal with Dialysis with Maurice Carlisle. Maurice Carlisle and myself we're a little hung up there, but we're happy to be back together here again and we have special guests today. We have Jeffrey Butler and his son Jerry Butler, and we're going to learn a little bit about, you know, jeffrey's kidney history and what he's gone through, and full disclosure. Maurice was Jeffrey's technician a while back, so we'll get that story too. Take it away, Maurice.

Speaker 2: 1:05

Yeah, so yes, I had the fortune of taking care of Mr Butler. We go way back on that.

Speaker 2: 1:16

One of the things that happened is that we were treating Mr Butler for his you know, his dialysis treatments at my previous center and when he initially came in he wasn't gaining any weight or anything. He wasn't gaining any fluid, and what I was seeing is that my co-workers were taking his fluids off of him too rapidly and too much. One of the things that he told me is that he would go home and he couldn't do anything. He couldn't cut the grass, he couldn't really get around, he'd be labored when he tried to get up and go places and stuff like that, and so at the hospital yeah, yeah, it was even worse, wasn't it?

Speaker 1: 1:57

Yes, it was yeah.

Speaker 2: 1:59

So we me and him formed a plan. We decided that we wouldn't take a lot of fluid off of him and we'd figure out a way to get his blood pressures up a little bit. What I was seeing is his blood pressure around 100 when he would get ready to leave. So I knew that in order for him to feel better, his blood pressures had to be over 100 for just to start out. So what I would do is I'd go over and ask him was he feeling well? Of course he'd say no, and I'd say well, we're going to turn down your goal and we're going to make sure that you leave with a little bit of fluid on the day.

Speaker 2: 2:32

And we did that on a Friday. And I can clearly remember when he came in on Monday, he was like Mo, I don't know what you did, but I could cut the grass, I could get around, absolutely yeah, and so, and so that's what we did at that point. We would do that every time, even if I wasn't taking care of him. I'd sneak over, yes, he would, yes, and change some stuff, and finally he started feeling better. So tell me about after that. You know, I remember we talked to the doctor, mr Butler, and we asked him to cut your time, so let's talk about that. What was his response to that?

Speaker 3: 3:11

Well, his first response was no, and then I kept insisting and I said you know, I don't, I really I don't feel what I need for our share time, you know and we, your VA, hit his VA doctor even suggested that Um he go down in time or miss a day, but they didn't want him out of the chair either.

Speaker 4: 3:37

Right right, you know, I got.

Speaker 3: 3:41

The doctor was, you know, kind of hard to deal with there and hard to get a hold of. Especially, you know like when I first started, dialysis came out of the hospital in the Moneon. I lost a lot of weight on count of that and then I found out about the kidney problem. But Anyway, I kept complaining to the doctor that you know I am gaining body weight but you know I'm not retaining fluid, you know, and Of course on advice that you gave me to Moe was, you know, to complain to him about it, you know. And Finally it did sink into him and they started, you know, raising my body weight or dry weight.

Speaker 4: 4:26

You know, when I came in, but they only decreased it by a half hour. They still want to have a chair three hours or Three days a week.

Speaker 3: 4:35

Yeah, that's true, they did decrease it by a half hour, which I thought was a battle one. But what I would like to talk about is Moe and how I Really feel at Moe saved my life. You know, in that place I have people over Dialinize me and also, if I can't say this, I was lucky enough have Moe in that place to give me a little education on the settings on that machine and really Not to not to really trust anyone and and have him set that machine face towards me so I can actually see what the dialysis which pissed a lot of people off, oh yeah, but, like Moe says, it's your health. He says, and you, you got to watch your own butt. And you know, I was just thankful To have Moe there to tell me this, which a lot of people, you know, did not know.

Speaker 3: 5:46

And, and, moe, even after you left, I was trying to pass that knowledge on to other patients that was there and I actually they would separate me, you know, for mispatient, you know, like I'd be beside them for a week or two, you know, and we've been talking about it, you know, and then this patient would start to question what's going on. Well, they would separate us this we was together on one corner of the building and Finally they separated, as they put him in one corner and me in the other corner, on the other side of the building.

Speaker 1: 6:35

Yes, so this kind what you're saying kind of speaks to what we've been talking about for a long time and what, what? What basically made Moe start this whole process is the fact that Patients aren't being educated properly, right, and it feels to me from my perspective that you know you talked about only being taken off for a half hour. It's like it's being hooked, it's literally sucking money out of people, right, because it's it's time, it's time on the clock or what have you, but, but the important thing is that, you know, for my sister, for other people, is that Patients are educated and that the conversation between you and Maurice, as a technician, should be Supported. You know what I mean, and and for whatever reason, it's not. And so what do you think could be done to kind of help patients and and technicians kind of work more together, because you're together most of the time, right?

Speaker 3: 7:35

Yeah, absolutely. I'm not saying alt, alt tax. I mean I Don't think it's that maybe not the tax fault, I think it's more on the nurses that's actually running the place or who the text has got an answer to. I Remember one time this nurse was telling the tech that my body needed Taxed. You know, and I'm thinking now, what the hell does that mean? Excuse my language and Actually what that meant was To take them the maximum amount of Flood off my body.

Speaker 3: 8:23

Mm-hmm that they possibly, could you know, up until feigning, breaking out in a sweat, feigning in the chair, blood pressure crashing, and Mo has done this more and once for me. He has come over to see what the hell is going on In that chair with me and he says this man needs flood.

Speaker 4: 8:48

I Think the biggest thing, what I noticed Was that there is a lack of patient advocacy. They want to keep keep people, you know, more of a blind eye. They want them in the chair. You know, making people better does not, you know it just take a money out of their pocket. I mean without all the conspiracy theories and things of that nature. But you know it's very. Yeah, it's not quite often they have a health care practitioner that actually shares knowledge.

Speaker 4: 9:32

You know, in in diocese, there again you see so many people that are non-compliant I what their diet and things of that. But you know, like, like dad was saying, I mean he'd come in at like 63 kilos is dry weight and Mud, like be like no way man, like 80 over 40. He's like no way you're leaving. It was. I mean, you know, is it being family and things like that. You know, and I'm a nurse and I was amazed because I really, you know, it was really pretty sad to see, you know, so many people in that state, but With no help.

Speaker 4: 10:20

I mean they, if people had a little bit more education, I mean that's the key, education is the key. I, I mean, I've been a nurse for 20 years, I didn't know anything about dialysis. I you know one, one quarter, you know that was it. You know, and you know it's like I, oh, I didn't know, I've never dealt with anything like that, but he ended up making it. I mean, in reality everything happens for a reason. I Not only I mean was friendships forged, but I mean education, advocacy. I mean too bad it. You know, I don't think. Well, I don't think they had much time for Really wanting to do any kind of patient education, you know yeah it's pretty Pretty sketchy.

Speaker 4: 11:17

not that it was a bad clinic, they were good people there.

Speaker 3: 11:21

Yeah, there's definitely good people there, but my father, I mean, I'm sorry, I gotta ring, ring your bell, I gotta praise you Would thank you, sir. You were absolutely right. I mean, those people had me down when my wife would bring me home. Now this is in the summertime, it's 85 degrees out and I got the heater on the car coming home.

Speaker 3: 11:47

Wow I get home and I cannot get out of the car, my wife Literally drags me in the house, puts me in bed and I'm in a Damn near an unconscious state till about nine o'clock In the evening when I finally you know, starting to move around get up.

Speaker 4: 12:10

Well, they didn't even really instruct you how to eat. Mo was telling you my word like go home, eat a pickle like you know right.

Speaker 3: 12:18

Right yeah well, gave me that. I mean that basis, my god man. He says I go home and eat a pickle. He says that will help. He says Believe me. And it did and I did do that. And another thing, if I could say this oh says there's another little secret, says squeeze your butt cheeks. If I can't add this, mo is absolutely right. I mean, and I did tell him and I saw I celebrated this crap when I came in and you know, in like the next day or Whatever you know, I said Mo, you did it. I said I went home and there was a blizzard outside. Well, it's snowing like hell and my mailbox is about an eighth mile round trip there to the mailbox and back into the house. And I Mean, I felt like a kid, you know, out there in the snow.

Speaker 3: 13:25

Wow, you know, and that's just the difference between you know the text, you know and.

Speaker 4: 13:33

You start getting in a good mood, and my brother and I were like we want our old dad back.

Speaker 2: 13:40

Absolutely, and I think. Well, mr Butler, I remember one occasion there was a nurse there and she told me that they were gonna take two kilos of fluid off of you and I said I said no, absolutely not, we're not doing that. And she said I'm the nurse. Remember this, nice says I'm the nurse and I'll tell you. You don't know. Yeah, I said, and I didn't want to do that in front of you, but yes, she was pushing me and finally I told her. I said well, I think you've been a nurse for two years. Absolutely, I said I've been a dialysis technician for over 19. I said that's your two years. Yes, what you don't know is she went back to the manager. Yeah, I'm manager. She told the manager that I belittled her in front of the patient and I was counsel for that. I wouldn't do it any different. I probably would have told her the same thing.

Speaker 3: 14:42

That's just able to drug me in on that deal.

Speaker 3: 14:45

Well, that's okay, you know I was my, I was, so I was so mad about that deal and and I Mean it's true. I mean you know you stuck up for me and and you, and that's exactly what you told her. You know you've been here, you've been a nurse there of two years or Whatever, and you said I've been a tech, you know, for 19,. You know, yeah, it's in your experience counts. I mean, for me personally, I don't think I would have survived that place without you, man, and I want to thank you for recommending me for kidney transplant to absolutely, absolutely.

Speaker 2: 15:28

I wanted to get you out of there and I knew that would be the only way and Well, can I mention a nurse's name, allison?

Speaker 3: 15:42

Well, you already did Mean. I don't want to get sued for.

Speaker 2: 15:50

No last names. I don't even know the last name.

Speaker 3: 15:55

But this is well. After you left, and right before my transplant, wow Came in and I made a mistake. Allison hooked me up, you know, and and I Said, well, she was in a hurry and all this, and I Didn't tell her to turn the machine towards me to see what the settings was, and when you know, she had it on like 300, yeah, and Anyway, she told me that the machine reset itself. That's why. But I don't, I don't believe that crap. Yeah, my wife came in to visit me.

Speaker 3: 16:40

Uh-huh or pick me up. That day she came back and there I was in the chair sweating profusely, couldn't talk, and Of course, you know, my wife panicked and got it, you know, allison, over there right away and they put in two big bags of fluid in me.

Speaker 4: 17:03

After two liters of fluid he weighed in at 88 pounds.

Speaker 3: 17:14

Oh, my gosh man. Anyway, it pissed me off so much I wrote a letter to David oh, wow, yeah, and I told them what happened and that I forget what all the letter said. But it was a two page letter, I was very happy about it. What? Was their response. They decided that they was going to double check the patient's settings on the machine by. You know, two different people.

Speaker 2: 17:46

Yeah, yeah, and that's supposed to happen anyway.

Speaker 2: 17:51

So yeah, I found that out later yeah typically the nurse isn't usually there when I'm hooking you up, like she comes around, she sees you at first and then after that we take care of you, and then the nurse comes over and gives you some meds or whatever. So, just to clarify, they set you for three kilos, which is about six pounds of fluid. You've never had six pounds of fluid on you ever. I'm just telling you that right now. I know that, I know that you've never gained that much fluid.

Speaker 2: 18:26

Unfortunately, it is true that when we reset the machine, it does set at three kilos, but that would mean that she never set a goal for you at all. Okay, and so for her to say that that was you know that the machine resets, hey, I get that that's an argument, but she didn't set a goal for you at all, so she never touched that box where that goal is set. She left it at three kilos, which is, you know which is horrible, because you, like I said, you don't gain three kilos in two weeks, and so that's six treatments. So if we were to just think about that, you would gain a half a kilo every time for six treatments to even equal out three kilos.

Speaker 2: 19:08

Just don't gain like that. You never have, you never did, yeah. And so I think sometimes part of the problem just clarify this part of the problem is is that the government tied the fluid to compensation. So they set a driveway for you Maybe your dry waste 84. And every time they get you to 84, they get a full payment, and every time you leave at 85, they don't see. So that's the problem.

Speaker 3: 19:43

I was coming in the driveway about 62, 64.

Speaker 4: 19:47

Mm hmm, and then they would. They would probably want to lower your dry weight all the time. Yes, yeah so if you think it's not a good.

Speaker 2: 19:58

Yeah, if you reach 64 tomorrow, we're going to try for 63.5. Right.

Speaker 3: 20:02

Right.

Speaker 2: 20:04

But that you know. But your blood pressure is an indication to us whether that's working or not, and when your blood pressure is under 100. I mean, I think sometimes the argument is if you come in in a wheelchair or you can leave under 100. If you can talk.