From Kidney Transplant to Systemic Change A Patient's Tale
Mar 03, 2024Season 1Episode 3
Maurice Carlisle and Ira McAliley
Navigating the healthcare system can be like walking through a maze blindfolded – fraught with unexpected turns and often overwhelming. Yet, we're pulling back the curtain to explore the real stories and challenges that patients and healthcare professionals face daily. Our latest episode peels back the layers of healthcare dynamics and the importance of advocacy, not just by professionals but by patients and their families. We examine the delicate dance between technicians and nurses, and the repercussions that healthcare compensation models have on patient care. Our discussion illuminates the stark reality of socioeconomic disparities affecting patient outcomes, brought to life with tales from specific communities.
Then, we're honored to share the microphone with a kidney transplant recipient whose resilience epitomizes the spirit of advocacy and self-care. Her journey from the anxiety-ridden wait for a transplant to the profound adjustments post-surgery paints a vivid picture of the emotional rollercoaster that transplant patients ride. We also turn an eye to the systemic changes needed to improve patient education, especially for those in underprivileged communities. It's an episode rich with the raw emotion of personal experiences and the wisdom gleaned from years of navigating and advocating within the healthcare system. Join us for a heartfelt conversation that's not just about the challenges, but the triumphs and calls to action that could reshape the future of patient care.
A conversation about the kidneys and what happens when they fail.
Navigating the healthcare system can be like walking through a maze blindfolded – fraught with unexpected turns and often overwhelming. Yet, we're pulling back the curtain to explore the real stories and challenges that patients and healthcare professionals face daily. Our latest episode peels back the layers of healthcare dynamics and the importance of advocacy, not just by professionals but by patients and their families. We examine the delicate dance between technicians and nurses, and the repercussions that healthcare compensation models have on patient care. Our discussion illuminates the stark reality of socioeconomic disparities affecting patient outcomes, brought to life with tales from specific communities.
Then, we're honored to share the microphone with a kidney transplant recipient whose resilience epitomizes the spirit of advocacy and self-care. Her journey from the anxiety-ridden wait for a transplant to the profound adjustments post-surgery paints a vivid picture of the emotional rollercoaster that transplant patients ride. We also turn an eye to the systemic changes needed to improve patient education, especially for those in underprivileged communities. It's an episode rich with the raw emotion of personal experiences and the wisdom gleaned from years of navigating and advocating within the healthcare system. Join us for a heartfelt conversation that's not just about the challenges, but the triumphs and calls to action that could reshape the future of patient care.
A conversation about the kidneys and what happens when they fail.
Speaker 2:
If you can say hi and bye, you all right. But when you get home you got to stand up to get out of that wheelchair, and your blood pressure is going to plummet when you stand up and that's why you don't feel good, and so the idea that you can leave under a hundred is just ludicrous. I mean, we want people to be over a hundred blood pressure to drive their car and I think it should be the same for you to get out of that chair to walk in your house, right? And so that's where we're failing the patients is that technicians are basically being bullied. I mean, if you've got two years as a technician and a nurse tells you something, you're scared. I mean it's only because I had all that experience that I wasn't intimidated by nurses that I worked with.
Speaker 2:
If somebody were two years, they're gonna be intimidated Right Right out the gate. I mean that nurse is gonna tell them what to do and, quite frankly, we are working under the nurse's license, but that nurse may not know you as well as I know you Absolutely. I may see you three days in that we can have a nurse who might see you one. She can't make that decision based on that one time she saw you and I can, because I saw you three times Right, and so it used to be that there was a better relationship, but they kind of ruined that relationship so they could get compensation Right, see, and so that's the dynamics behind all of that.
Speaker 4:
Yeah, if you think for a fact, I mean that nurses really do know. I mean, like I said, I mean you know you're rushed through and you get maybe three months of something, I mean come on, and then you come out and get hired. I mean I had no idea, like what was even going on, mm-hmm. So to me walking that position, you know, and me as a practitioner, I think it's so funny. Nurses act a lot like they know what they're doing and they like to pretend. But yeah, it's just not the case all the time. When you're dealing with practitioners that say always and never, I mean it's never a good idea. Um, you know, I'd be wrong comfortable. I'd be looking for guys like you and I did.
Speaker 2:
I mean, we had long conversations and Came in the center to see your dad like, yeah, frequently that was before cobit and all that. So I should just say, but you and your brother came in a lot and set with your dad and and and then we had a lot of conversations.
Speaker 4:
Um, and I think that's another happened.
Speaker 4:
And that that was another thing. The dynamics of having that Um, continuity of care, I know you'd always look, you know, look to have dad, yes, and and it wasn't. It wasn't like that. Um, you know you, you two single-handedly, um, I wouldn't, I wouldn't say whistleblowers, but you were the Um, the bad cog in the whole thing. You know it's that being proud, you know, and saying hey, you guys, like man, you really, you know, I think this is important for you know people to know maybe they'd be a little bit more compliant. Um, so many times you see it that you just, and it's a dynamics of of where you work at newark, I mean that's a poorer community and um, you know, so you do see a lot more. You know non-compliance, would I mean anything from diet, I mean these people, you know they they probably been on the system.
Speaker 2:
They kind of reward the foods that they need right right, when you start talking about disability and you start saying, okay, I, you need to eat, you know, lean meats and fruits and vegetables and those, those things are very expensive, right, they can't afford those. And so they eat what they can afford, which just happens to be a bad thing for their kidneys Usually it's high in sodium. Yes, so they're doomed. I mean, it's not their fault. You know, by the time all of this stuff went on with me and your dad, and you know, I got all that stuff down and the doctor was actually listening a little bit, right?
Speaker 2:
Um, I got called in the office and they told me they figured out what I was doing. It took them a minute, but they figured it out. So they brought me in the office. They said, maurice, you can't give more than 200 cc's of saline without without asking a nurse, without asking a nurse. And so it was kind of like they could. You know, they just kept trying to figure out ways that they could belittle me, right, but all they were doing was just making themselves run crazy because I was going to do what I was going to do anyway, because I knew it was best for them, and so, you know, I just kind of figured out a way. I just figured out a way to make it work within the dynamics of what they do, uh, but by the end of it I mean they were treating me like I was someone who had less than a week of experience.
Speaker 4:
I know and you trained everyone in there. That's an idea Well yeah, I was.
Speaker 1:
I was a precept pretty much in everybody in there, but I think the problem in on was the people, that that you trained like brook Mm-hmm. I mean you was right, brooke was intimidated by the nurses and shit, but anyway she did the best that she could. And you know that nurse would say something to her and Brooke would look at me and then she'd give me them high eyebrows like wow, anyway.
Speaker 1:
And then if you do, you remember Erica? Yes, I do, my god, she was. She was an angel, yes, yes, and I'm sorry, she, I mean she listen. She must listen to you too much, because she had a mind of her own.
Speaker 2:
She was a strong person.
Speaker 1:
She did really really well, right, and she, and she told me everything. I mean, you know.
Speaker 4:
You start out just beautiful people. I mean yeah, yeah.
Speaker 2:
But I pass that on right.
Speaker 1:
Yeah, I'm glad you passed that on the brook. I'm sure that made her a better. Better tech and a better nurse. Yeah that's what you started for yeah, well, that's great. Really proud of you there, the way you went playing, so just do Thank you. They kind of Took over when you left off with they didn't right, eric, or one as far as quitting.
Speaker 2:
Yeah.
Speaker 1:
Yeah, you know, told me she says they're gonna kill somebody in here.
Speaker 2:
Yeah, she left. She's actually at one of the other centers in Columbus now. Oh, yeah, I know her parents. So that's one of those things by being in the same you know city and being in my hometown, I knew a lot of the people. Yeah, her parents.
Speaker 1:
But you did make me well, and you made me.
Speaker 3:
Good.
Speaker 2:
It was just save one, and if you're the one that I save, I mean it was well worth everything, every minute of it.
Speaker 1:
From the, from the day I walked in there, you made me comfortable. I mean, when I came in, you know you use you started explaining what you was gonna do and and you started encouraging me, like saying Jeff, you're gonna feel better. Yeah.
Speaker 2:
I remember. Yeah, remember they tried to foil it but I wasn't having it. They were determined but I was.
Speaker 3:
I was more determined, so my question is how do we affect change, like, how do we take this dynamic and have that spread? I mean, already you know Maurice is one person, but he does everything that he can do and you know we try to inspire others, to inspire others, you know, and try to pass it along, but systematically, is there's something that anybody can think of that could help shift that?
Speaker 2:
Is a perfect example. Right, what we did. I think this is a perfect example. I hope people see this. I hope they hope technicians are empowered To stand up. I mean, you do need a little bit of experience to do that. I think that Dynamically, right now, because of COVID and everything this went on, I think you have younger technicians In dialysis centers now because all the people that were With experience, like me, they left the industry. They were, they were pushed out. Yeah, so you know, I think centers figure out. You know, if I got young people and I mold them the way I want them to be, I don't have this dynamic that shows up, but it's gonna show up because people care. When you are a dialysis technician, if you care about people, you're gonna arrive at the same conclusions that I arrived at. But you have to care, right. Right, it can't be just a job like you working at McDonald's and you just bring out the fries. No, you have to. You have to care about the people you take care of.
Speaker 4:
And I think if that dynamic exists and we get here, Well it's, it's leaving like with parent neodylosis, like they celebrate and they do all this patient education and, and, you know, after they get done. You know, I think it should be mandatory that well, we need what we, what we really need is Blood pressure control. I mean, if you look at the patient populations, you know Native Americans, african Americans, like, and, but they're all the poor people that that suffer the most and because it's easy to pass a pill off, they don't. You know, they teach nothing. You know dad was exposed to Agent Orange and you know, I think part of the reason he got a Kidney is because he was a combat veteran and I think that you know, probably played a role in it. But I mean Not only, I mean for hemodialysis, there needs to be mandatory education that I don't think you know happens like it should, and there needs to be a standard set, you know.
Speaker 2:
Yes, it's too little, too late. I mean, we we have education programs, but they're not offered to people who aren't on dialysis yet right which and that's where.
Speaker 2:
That's where it should start. Yes, I mean it should start at CKD, which is 60% kidney. It starts with 15%. I mean we've got a long way to go. There's a lot of percentages between there that we could be educating people and helping them understand what's happening to them. I know right now me and I have talked about it Patients can be put on the transplant list before they ever go into a dialysis center and have a treatment, but 99% of the patients don't know that Right.
Speaker 1:
Right, and that's true man.
Speaker 2:
Yeah, they just don't know. And so that's why we're doing what's to do with dialysis, so that people can ask those questions, so they can go away from these conversations and say, hey, you told me that I'm at 25% and you haven't even asked me about transplant, right? You haven't even asked me. Do I have a family? Remember? They want to give me a kidney. All you keep telling me is you want me to go to this center, this is the address and this is the day I need to show up, and you don't even tell me what to expect.
Speaker 4:
Right, absolutely. And then they're getting to get on dialysis and it's all magic to them. They're hooked up to a machine. No one does any kind of education. They go home and eat pizza and do whatever. I mean, no one is doing anything and it is a factor, and it is a moneymaker, unfortunately, in any industry. An empty chair and ate stuff in someone's pocket.
Speaker 2:
Yeah.
Speaker 4:
Yeah.
Speaker 2:
An empty chair isn't making them any money. I tell you. The other thing is, Mr Butler, do you remember any training that the company would give you? I think we would pass off these pieces of paper and have you sign that. You got the paper.
Speaker 4:
Throw your labs and stuff.
Speaker 2:
Yeah, but nobody would ever go over the paper with you. We'd just hand it to you and ask you to sign.
Speaker 1:
Absolutely Well. Fortunately, I have a pretty smart wife and, like I said, my son's a nurse and my wife would always look up the results, exactly what they were and how I was doing.
Speaker 2:
Right, right, and then there's the answer. There's the answer.
Speaker 3:
We all have to get it yourself.
Speaker 2:
Yeah, your family has to be an advocate for you and to have it Absolutely.
Speaker 1:
Yeah, that's for sure, and I'm proud to call you family?
Speaker 2:
I mean, yes, you are family, sir, absolutely, absolutely. And you tell Mrs Butler, I said hello, I have a seat.
Speaker 1:
Well, I hope she came out here and add to this Right.
Speaker 2:
Right, yeah, it's always. We always talked a lot, me and her as well. Yes, when you were there, she'd come pick you up and come in and sit with you for a while before we got you off the machine.
Speaker 1:
Right Then to treat you to this. The last one. I had the first one and then the last one. That was real good help at DeVita and then good, good, good. But, like I say, my wife always made sure that I, you know, followed the diet. You know. They'd hand out those brochures of what you should and should you know. And, uh, my wife I mean she, she even read the labels at the grocery store absolutely, we have to yeah, she says.
Speaker 1:
That's why it always took her an hour more in the store, because she had to read every label well, it was well worth it.
Speaker 2:
You see the outcome right. You see the success did you have and how you feel. All of that is a testimony to your family and into your sons man, I sure appreciate you recommend me for the transplant.
Speaker 1:
Yeah, absolutely. At one summer I spent all summer going through the astronaut physical. That's what I called it for the kidney transplant right right.
Speaker 2:
That's about what it is. You gotta go to a bunch of appointments yeah, a bunch appointments.
Speaker 1:
You know you have to do the air chamber thing and, uh, the treadmill, and I forget there was three or four other things right dentist, right dentist yeah all those things. Yep, I had to have a root canal before I had to transplant.
Speaker 2:
Yeah, I know they make you do a lot yeah, if I had.
Speaker 1:
Uh, I had a great dentist jump through hoops and make sure that was done good and well, all in all, you know, like I say, it's been two years since the transplant, awesome. And then I figured uh well, I'd be on a transplant list. You know, they said two years yeah yeah, in December they called me and told me that, uh, I was eligible for a transplant. Uh, in January, 4, 30 in the morning they called me wow is that we have a kidney for you man.
Speaker 1:
That's a blessing so they said pack your bag and come on up. Well, I almost get to OSU hospital and they called me back instead of the family had uh remorse about it and uh go home okay but it wasn't too much. Later they called me again, and so that was fast Mo.
Speaker 2:
Good, good, I'm glad.
Speaker 4:
I want to ask Kyra, how's your sister doing?
Speaker 3:
Yeah she's doing well.
Speaker 3:
She's always been active, she's kind of a political activist and she has six children and 10 grand children and like she was on paratoneal and she would take, she would go on trips, like she went to Europe and had her fluid shift and so and she was very much an advocate for herself. Like she will do the research, she will stand up for herself. If somebody goes the wrong, she'll have switched out Like she's that person and so she's. You know. The one thing that she doesn't do is she doesn't slow down. So she needs to kind of slow down a little bit. After having her transplant she's lost weight, she's very vibrant and I appreciate you asking.
Speaker 4:
Did you see ups and downs with her? I mean post transplant, I mean as far as morale, and did I do the right thing? Because I think there for a while you're almost sicker than you know what you were on dialysis. And you know another thing with dialysis you forge friendships and you get used to seeing those people and you know it was like a whole, totally different lifestyle. I mean right, and one time told me it was bored not being in a dialysis Right.
Speaker 2:
Don't get saved.
Speaker 3:
Part of your routine.
Speaker 3:
Like for her, though, because she was on peritoneal, she was at home and she did her own thing, and like yeah, in the visit, me and she like grabbed the coat rack and put her bag up and like we sat and talked while she did her exchange. You know it's very casual about it and you know she wasn't trying to hide it, so that worked for her. You know it doesn't work for everyone and you know so after her transplant, I mean, it's only been, yeah, margie, months, it's only, it's recent. So you did have right afterwards she had a minor thing that she had to go in for and but it's the compatibility.
Speaker 3:
I forget how you know rejection factor and there's, like different meds that you have to take to for, oh, tackle MS attack levels, and I'm afraid you have to take those. The rest of her life, yeah so he's just figuring all that out. I mean, she, she didn't get her. She went five different times, I think it was, until she got her kidney, the first two times because she wasn't vaccinated, they wouldn't let her have it, and then, I think, two that wound up being bad, and then finally got it on the fifth time.
Speaker 4:
Now she out in California to know she's actually in Jacksonville, Florida, oh nice.
Speaker 3:
And when she started on dialysis she was in Pennsylvania. She was in Reading, reading, pennsylvania, see yeah.
Speaker 4:
Yeah, she seems real positive though.
Speaker 3:
She's, definitely she's you know, you know strong woman. She does her thing and she definitely is an advocate for others. I mean, she she's got a nursing degree and then she became a social worker, so she's very much an advocate for others.
Speaker 4:
Right, yeah, yeah, it's tough, god bless her.
Speaker 2:
I mean, we interviewed her post transplant as well. We'll be putting that up next. We were just trying to figure out a couple of logistical things, because some of the stuff that I've been putting up, we wanted to change the quality of it and stuff like that. So we're just figuring that out. But yeah, well, you'll be seeing that come up here pretty soon as well.