Episode 7.2 Lauren: Adapting to a New Rhythm with Peritoneal Dialysis

Send us a text

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.

With hosts Maurice Carlisle and Ira McAliley

Episode Transcript

Speaker 1 (00:23):
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 twoliter bag of dextrose solution
and what I actually do is calledCAPD.

(00:47):
It's called peritoneal dialysis.
So I use this dextrose fluid Ineed to do at this point I'm
doing four manually exchanges aday, which means that I need to
put the fluid in my stomach,having in my stomach at least
five hours so it can draw thetoxin.
It actually acts like a saltwhere it will draw the toxins

(01:07):
out of the cells.
And then I do something calledan exchange.
So what I'm about to do is Ihave an empty bag here and
through gravity I'm going toattach this bag to my stomach.
I have a tube in my belly andit's going to get rid of all of
the toxins in the fluid into mybelly right now, and then I

(01:29):
exchange it for this clean fluidwhich I will then allow to
insert into my peritoneal areafor the technical term.
So that's exactly what I'mdoing.
Cool, and so I have to.
I'm supposed to do it like verythoroughly, but because I'm in
my home environment and I'vebeen doing it for a while, I

(01:49):
don't need to like, I need touse.
I have like an anti-bacterialhand sanitizer that I use and
then I'm supposed to clean mylittle port that I have with
solution and it's a high leveldisinfectant that I use before I
attach to my cycler and this iscalled a cycler.

(02:12):
So this is an apparatus that Iuse and my bag actually comes
pre-made, so it has this littleconnection here that I put
inside this cycler and I attachit and I use this to pretty much
work through my exchange.
It's kind of like fail-proofsort of, even though I have

(02:34):
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 byaccident because I'm not really
paying attention, but other thanthat, you know, it's pretty
much fail-proof.
So I'm going to get started andI have an IV pole here and
that's just because I need tohave something to hang it on.

(02:57):
I get a little creative when Igo 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 hangersand put them on top of
lampshades at a hotel.
I've done all kinds of stuff Inmy car.
We just use my husband's driveand I use the hanger for your

(03:21):
dry cleaning and then I just tryto have something flat.
I have all kinds of junk in mycar so I might use like a flat
magazine to put this cyclerconnector on and to sit it on
there.
And then my husband drives andwe're doing whatever, talking
and everything, and then I'mdone within a half hour.

(03:42):
So probably by the time we getto wherever we need to get to,
I'm done, and then I just I tryto keep Store bags, plastic
store bags because then I justdump it all in a store bag.
It's not toxic, it's not haveHazardous, so I just tie it up
real tightly and dump it in thenearest trash can.
Now, at home I do empty, I cuta hole in the bag where the

(04:06):
toxins are and I just pour itdown the toilet and then I wrap
everything up, neely, and put itin a plastic bag it's hard up
tightly and then put it in aregular trash.
Okay, very creative.
This is my tube for my stomach,okay, and I have a usually tape

(04:29):
to my stomach, so this is thetube that I need to put into my
cycle and so I have to put it inFear and it actually says
extension yeah, it saysextension.
And then I turn it Very gentlyand then I take off the the one

(04:49):
in the middle which is myconnector, and Then I attach it.
So I just attached it.
I have a little Um here thatkeeps anything from coming out
Okay, like any of my fluid fromcoming out.
It's all ready for that, okay.
So I'm gonna attach it back tothe holder on the, on my IV to

(05:10):
now also To keep from all thefluid from coming out of the bag
that has the dextrose in itthere's like a little Metal,
like a little plastic tab I haveto break and then, once I break
that, then I'm pretty muchready to go.
So now I'm going to start toyou on.
I just open up the little clipthat I was telling you about and

(05:32):
, gravity, the fluid just comesout of my stomach and this goes
into the bag and I don't know ifyou're gonna be able to see
I'll get all that.
You see in a couple secondswhat it looks like.
You can see some of the fluidComing down.
We can't see like littlebubbles at all.
Yeah, we see it.

(05:53):
So by the time, hopefully, Iput in two liters, which is two
thousand milliliters, and mystomach around like four, about
four thirty four five.
So I should hopefully get thatout.
I am using right now.
We have three different levelsof solutions.

(06:14):
There's one point five, whichis for people that really don't
need a lot of drawing out of thecells.
We have two point five, whichis for people that sometimes
retain too much fluid or retaina little bit of fluid and that
Concentration allows for morepulling of fluids out of the
cells so you can stay Balanced,and then they have something

(06:35):
called a four point two five.
I never get the four point twofives.
I don't even order them,because if you start to use four
point two fives from what Iunderstand and I might be wrong
with my number it's four pointsomething.
I apologize If you use, ifyou're using that, that usually
means that you're not good atdialysis.
Dialysis yeah, it's dialysis,and then they kind of try to

(06:57):
come up with another Possibilityto use if you've got to keep
using the fourth point, becauseit means that the processing of
working.
I'm using a two point fiveright now because I am going to
be keeping this in my stomachovernight and I have a couple
more cyclic fluids.

(07:18):
The actual machine is called acycler that I use I see is it
overnight?
I have a couple more than I'mgoing to use it and I'm going to
get strictly back to manuals.
So I won't be starting mycycler tomorrow evening,
probably until about five.
So I really need to Try to geta lot of fluids out throughout
the day tomorrow and then I'lluse the rest of my Cycler fluid

(07:41):
for my machine and then Probably, I think tomorrow's Monday,
probably on Wednesday, I'll beback to just doing manuals,
strictly, you know, withouthaving to use the machine.
I don't like the machine sothat's why I don't really use it
.
I don't like to use it.
I did tell my doctor that Iprefer I have more freedom doing
manuals because I can come andgo.

(08:04):
Before I stopped working I wasable to take my fluids to work
and I would do it at work in thenurses office.
Somehow my county job had anursing office, I don't know but
we did, and I was able to go atlunchtime and do my exchanges.
Then they put me on the cycle,the machine I'm pointing this
way because that's where my roomis and on the first night on

(08:25):
the cycle.
I guess we all have a hole inour diaphragm that's like a
one-way valve and I guess I didso much fluid that the fluid
actually went up into my lungcavity and it collapsed my lung.
But I didn't know for a week.
So I was walking aroundthinking I had to lose weight.

(08:45):
Wow, and I found out my lungcollapsed but it was because of
that stupid cycle.
So that was the whole chore.
So once I just kind of feel likeI don't sleep well because I'm
sitting here attached to amachine all night.
I don't sleep well anyway.
So then when I have thismachine attached, it beeps if
you move it wrong.

(09:05):
I sleep on my stomach mostly.
So I'm sleeping on my stomachwith this stupid tube in.
It'll rain and the bells willwhistle and you got to get up
out of the bed and turn it offand figure out what the problem
is and I just ended up sittingup all night watching TV because
I just wouldn't wait for it tofinish, and then I go to sleep,
which might not be until threeor four o'clock in the morning.
So it just, I think, justallows for my life to be able to

(09:28):
be a lot more manageable, good,good.
So tell me, how did you find outthat you needed dialysis and
what were the circumstances ofthat?
Okay, I'm going to go back toyou.
Hold one second, I'm sorry.
Hold on real quick.
Did you delete the footage offof that?
No, all right.

(09:48):
Cool, I think I'm going tochange the sodium.
He's going to change somethingon the camera.
One second, I got my eyes fixedor 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 chemoat the center, they immediately

(10:14):
told me they were going to fasttrack me.
They told me I was young, butthe gentleman was going to be
fast.
I was like, okay, okay, okay.