When faced with a life-altering diagnosis, the strength and resilience of the human spirit are truly tested. Our latest guest's journey through the intricate dance of Continuous Ambulatory Peritoneal Dialysis (CAPD) reveals just that—a testament to the power of adaptation and the will to live fully, despite the strings attached to a peritoneal catheter. With a routine punctuated by four manual exchanges of dextrose solution daily, our guest unveils the meticulous care and precision needed to keep their body free from toxins. Their story isn't just about the mechanics of dialysis; it's a narrative woven with the threads of ingenuity and determination, demonstrating how to maintain a semblance of normalcy when your living room turns into a makeshift clinic.
Yet, behind the routine lies a turbulent sea of challenges that our guest navigates with unyielding courage. Transitioning from the control of manual exchanges at the workplace to being anchored to a cycler machine at night, they've confronted the formidable waves of a collapsed lung and the erosion of restful slumber. In an intimate recount of the emotional odyssey from diagnosis to the relentless ticking of the dialysis machine, we gain profound insights into the complexities of interfacing with an overburdened healthcare system and the silent battles fought in the solitude of the night. This episode is not just a glimpse into a life lived in tandem with technology; it's an invitation to understand the human condition through the lens of extraordinary circumstances.
A conversation about the kidneys and what happens when they fail.
When faced with a life-altering diagnosis, the strength and resilience of the human spirit are truly tested. Our latest guest's journey through the intricate dance of Continuous Ambulatory Peritoneal Dialysis (CAPD) reveals just that—a testament to the power of adaptation and the will to live fully, despite the strings attached to a peritoneal catheter. With a routine punctuated by four manual exchanges of dextrose solution daily, our guest unveils the meticulous care and precision needed to keep their body free from toxins. Their story isn't just about the mechanics of dialysis; it's a narrative woven with the threads of ingenuity and determination, demonstrating how to maintain a semblance of normalcy when your living room turns into a makeshift clinic.
Yet, behind the routine lies a turbulent sea of challenges that our guest navigates with unyielding courage. Transitioning from the control of manual exchanges at the workplace to being anchored to a cycler machine at night, they've confronted the formidable waves of a collapsed lung and the erosion of restful slumber. In an intimate recount of the emotional odyssey from diagnosis to the relentless ticking of the dialysis machine, we gain profound insights into the complexities of interfacing with an overburdened healthcare system and the silent battles fought in the solitude of the night. This episode is not just a glimpse into a life lived in tandem with technology; it's an invitation to understand the human condition through the lens of extraordinary circumstances.
A conversation about the kidneys and what happens when they fail.
Speaker 1:
I don't at all like so really quickly as you're doing it. Just explain what you're up to, what you're doing. Okay, what I have is a two liter bag of dextrose solution and what I actually do is called CAPD. It's called peritoneal dialysis. So I use this dextrose fluid I need to do at this point I'm doing four manually exchanges a day, which means that I need to put the fluid in my stomach, having in my stomach at least five hours so it can draw the toxin. It actually acts like a salt where it will draw the toxins out of the cells. And then I do something called an exchange. So what I'm about to do is I have an empty bag here and through gravity I'm going to attach this bag to my stomach. I have a tube in my belly and it's going to get rid of all of the toxins in the fluid into my belly right now, and then I exchange it for this clean fluid which I will then allow to insert into my peritoneal area for the technical term. So that's exactly what I'm doing. Cool, and so I have to. I'm supposed to do it like very thoroughly, but because I'm in my home environment and I've been doing it for a while, I don't need to like, I need to use. I have like an anti-bacterial hand sanitizer that I use and then I'm supposed to clean my little port that I have with solution and it's a high level disinfectant that I use before I attach to my cycler and this is called a cycler. So this is an apparatus that I use and my bag actually comes pre-made, so it has this little connection here that I put inside this cycler and I attach it and I use this to pretty much work through my exchange. It's kind of like fail-proof sort of, even though I have messed it up a couple times. If I get to watch a good movie, sometimes I will drain all of the good fluid into the bag by accident because I'm not really paying attention, but other than that, you know, it's pretty much fail-proof. So I'm going to get started and I have an IV pole here and that's just because I need to have something to hang it on.
Speaker 1:
I get a little creative when I go away because, like when I go to a hotel or come in my car, because I have to find something to hang it on, I use hangers and put them on top of lampshades at a hotel. I've done all kinds of stuff In my car. We just use my husband's drive and I use the hanger for your dry cleaning and then I just try to have something flat. I have all kinds of junk in my car so I might use like a flat magazine to put this cycler connector on and to sit it on there. And then my husband drives and we're doing whatever, talking and everything, and then I'm done within a half hour. So probably by the time we get to wherever we need to get to, I'm done, and then I just I try to keep Store bags, plastic store bags because then I just dump it all in a store bag.
Speaker 1:
It's not toxic, it's not have Hazardous, so I just tie it up real tightly and dump it in the nearest trash can. Now, at home I do empty, I cut a hole in the bag where the toxins are and I just pour it down the toilet and then I wrap everything up, neely, and put it in a plastic bag it's hard up tightly and then put it in a regular trash. Okay, very creative. This is my tube for my stomach, okay, and I have a usually tape to my stomach, so this is the tube that I need to put into my cycle and so I have to put it in Fear and it actually says extension yeah, it says extension. And then I turn it Very gently and then I take off the the one in the middle which is my connector, and Then I attach it. So I just attached it. I have a little Um here that keeps anything from coming out Okay, like any of my fluid from coming out. It's all ready for that, okay. So I'm gonna attach it back to the holder on the, on my IV to now also To keep from all the fluid from coming out of the bag that has the dextrose in it there's like a little Metal, like a little plastic tab I have to break and then, once I break that, then I'm pretty much ready to go. So now I'm going to start to you on. I just open up the little clip that I was telling you about and, gravity, the fluid just comes out of my stomach and this goes into the bag and I don't know if you're gonna be able to see I'll get all that. You see in a couple seconds what it looks like. You can see some of the fluid Coming down. We can't see like little bubbles at all. Yeah, we see it. So by the time, hopefully, I put in two liters, which is two thousand milliliters, and my stomach around like four, about four thirty four five. So I should hopefully get that out.
Speaker 1:
I am using right now. We have three different levels of solutions. There's one point five, which is for people that really don't need a lot of drawing out of the cells. We have two point five, which is for people that sometimes retain too much fluid or retain a little bit of fluid and that Concentration allows for more pulling of fluids out of the cells so you can stay Balanced, and then they have something called a four point two five. I never get the four point two fives. I don't even order them, because if you start to use four point two fives from what I understand and I might be wrong with my number it's four point something. I apologize If you use, if you're using that, that usually means that you're not good at dialysis. Dialysis yeah, it's dialysis, and then they kind of try to come up with another Possibility to use if you've got to keep using the fourth point, because it means that the processing of working. I'm using a two point five right now because I am going to be keeping this in my stomach overnight and I have a couple more cyclic fluids.
Speaker 1:
The actual machine is called a cycler that I use I see is it overnight? I have a couple more than I'm going to use it and I'm going to get strictly back to manuals. So I won't be starting my cycler tomorrow evening, probably until about five. So I really need to Try to get a lot of fluids out throughout the day tomorrow and then I'll use the rest of my Cycler fluid for my machine and then Probably, I think tomorrow's Monday, probably on Wednesday, I'll be back to just doing manuals, strictly, you know, without having to use the machine. I don't like the machine so that's why I don't really use it. I don't like to use it. I did tell my doctor that I prefer I have more freedom doing manuals because I can come and go.
Speaker 1:
Before I stopped working I was able to take my fluids to work and I would do it at work in the nurses office. Somehow my county job had a nursing office, I don't know but we did, and I was able to go at lunchtime and do my exchanges. Then they put me on the cycle, the machine I'm pointing this way because that's where my room is and on the first night on the cycle. I guess we all have a hole in our diaphragm that's like a one-way valve and I guess I did so much fluid that the fluid actually went up into my lung cavity and it collapsed my lung. But I didn't know for a week. So I was walking around thinking I had to lose weight. Wow, and I found out my lung collapsed but it was because of that stupid cycle. So that was the whole chore.
Speaker 1:
So once I just kind of feel like I don't sleep well because I'm sitting here attached to a machine all night. I don't sleep well anyway. So then when I have this machine attached, it beeps if you move it wrong. I sleep on my stomach mostly. So I'm sleeping on my stomach with this stupid tube in. It'll rain and the bells will whistle and you got to get up out of the bed and turn it off and figure out what the problem is and I just ended up sitting up all night watching TV because I just wouldn't wait for it to finish, and then I go to sleep, which might not be until three or four o'clock in the morning. So it just, I think, just allows for my life to be able to be a lot more manageable, good, good.
Speaker 1:
So tell me, how did you find out that you needed dialysis and what were the circumstances of that? Okay, I'm going to go back to you. Hold one second, I'm sorry. Hold on real quick. Did you delete the footage off of that? No, all right. Cool, I think I'm going to change the sodium. He's going to change something on the camera. One second, I got my eyes fixed or somewhere. Yes, yes, absolutely Well, peritoneal is the best form of dialysis. I think so, it is. It is. Yeah, I think. Well, I will tell you. When I started my first chemo at the center, they immediately told me they were going to fast track me. They told me I was young, but the gentleman was going to be fast. I was like, okay, okay, okay.