Episode 4 with David: Uncovering the Emotional and Practical Realities of Dialysis: A Guide to Navigating Treatment and Resilience

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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

Episode Transcript

Speaker 1 (00:22):
What's up?
Wonderful people, this is IraMcAulay, back for another
installment of what's the Dealwith Dialysis, here with Maurice
Carlisle, kind of the heartchild behind this concept of
educating folks and digging intothe industry and the practice

(00:43):
and all that goes along withkidney dialysis.
And you know, we're just tryingto shed light and add value to
people's lives and make theprocess better for for patients,
for their families, for friendswho love those folks that are
going through it.
And today we have a wonderfulguest who's a social worker.

(01:06):
His name is David Baptist andhe is gracing us with his
presence and knowledge and we'llget into a nice little
conversation about what he does.
He has a nonprofit that'scalled High Desert Kidney Hope
and we're going to get into thata little bit.
But, david, welcome and happyto have you here.

Speaker 2 (01:28):
Thank you.

Speaker 1 (01:28):
Yeah, welcome.
David, I'm glad to be here.
So, first getting into it, giveus a little bit of background
just on yourself and kind of howyou got to the kidney dialysis
world as well as just being asocial worker.

Speaker 2 (01:44):
Yeah, and I got my master's degree about 15 years
ago and was working for acompany that's an HMO called
Scan Health Plan, still around,kind of getting into medical
social work.
But like most people, I had noidea what dialysis was.

(02:05):
I just knew that this healthplan did not accept people on
dialysis.
That's the extent of what Iknew about dialysis.
But as time progressed and Igot more into the field, an
opening came about a dialysiscenter and they needed a person
with a master's degree in socialwork.
So I got into it, started fromscratch, didn't know anything.

(02:28):
Great website for people toknow about is KidneySchoolorg.
It has these modules.
It takes probably like eighthours to go through but full
education on dialysis, the rolesof dialysis, kidney transplant,
different modalities, supereducational.

(02:49):
Recommend anybody go in and dothat.
So I kind of took that as acrash course to learn as well as
getting into the dialysiscenter itself and really
understanding what it was.

Speaker 1 (03:04):
Great.
And so, since you've come intothe dialysis world and you know
you have retraining, explainjust a little bit about your
day-to-day and what your role isin the process of a patient
getting, uh being on dialysis.

Speaker 2 (03:22):
So it's mostly adjustment, as getting somebody
used to this whole new life.
We expect somebody to beoverwhelmed, not wanting to do
it but knowing they have to doit to live, to be active, facing

(03:42):
that choice, totallyoverwhelmed, all this medical
jargon being thrown at them,these machines that when you
walk in you're like feeling thissci-fi, alien spaceship kind of
aura about you, like all thesepeople plugged into machines and

(04:02):
you wonder like what theworld's going on.
So just kind of going with them, trying to normalize this
medical process, make them feelcomfortable with it.
That's the first thing.
So I guess it's getting theshock and then it goes more into
like the losses they're feeling.
So they're going through thishuge loss because whatever they

(04:25):
were doing before and whateverplans they had for their future,
their physical abilities, theirjobs, their relationships, all
of that has in some way beenimpacted or totally taken from
them all together.
So you have this huge loss andwith that comes sadness,
depression.
So trying to get them to kindof reframe how they look at life

(04:51):
and what the value isespecially for men, I think,
because we put so much value asmen into our bodies and what
we're capable of doing and beingstrong and it is for women too,
because they're like the anchorof the family and their roles
interrupted and everybody'scaring for them now instead of

(05:13):
them caring for others.
So each person has their owndynamic and what they've lost
and what they're going through.
So first trying to help themthrough the shock, then trying
to help them through the lossand meanwhile trying to get them
connected with any kind ofprograms out there.

(05:34):
First and foremost, transplantprograms.
Get them hooked up with ahospital that could do a
transplant, explain to them theprocess.
Trying to get them hooked upwith some kind of insurance
coverage, because if they wereworking and their job is through
an employer, like picture rightnow, you can't work, you lose

(05:55):
your benefits, cobra lasts what?
Six months, and then what?
So trying to get them thatbenefit, some kind of way of
earning income, social security,disability, different county
programs, medi-cal, food stampsso trying to replace those
immediate needs while they'regoing through this loss and

(06:17):
they're trying to get adjustedto a new life.
It's a lot at first.
It probably takes somebody atleast six months to feel like
they're settling in.
Wow.

Speaker 1 (06:29):
That sounds fairly traumatic and just to be to just
let everyone know, you're inCalifornia and Maurice is in
Ohio.
I'm in California but just foryou know just kind of context of
where we're at.
But in that sounds like there'slike a lot of in that trauma,

(06:51):
just mental health stuff.
Before we got on here, mauricewas talking about a patient that
was going through.
So Maurice, talk a little bitabout that.
It's like what has happened tothis one patient that you're
talking about?

Speaker 3 (07:04):
Yeah, so you know fairly young patient, you know
early 30s, and he's currentlyjust starting dialysis about the
last month or so and justhaving a really difficult time
adjusting.
You know didn't seem like thatat first.
Like came to his treatments atfirst, was very kind of, you

(07:27):
know, personable, and you knowlike a really nice young man,
and you know I'm sure he is.
And now after about three weeksof 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 hehad treatment he didn't show up
to treatment and then when thenurse talked with him it was

(07:47):
that he just couldn't physicallyget himself to come into the
center to have treatment.
And so you know, we seedifferent forms of that and I've
worked with the social workerand many clinics that I worked
in before just trying toidentify those things.
But then you know, sometimespatients don't want to talk
about it.
They don't want to, you know,they kind of don't want to

(08:08):
address it and they keep denyingthat.
You know those issues evenexist.
And so you know, even if theydo go over and have some kind of
conversation with the socialworker, they're still kind of
lacking in that information.
And, you know, one of thethings I wanted to ask David
about, just like in discussingthis, is that you know, I wonder

(08:28):
if we see patients coming tothe 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 havingdialysis and stuff like that.
You know, david, like I wonder,are you seeing patients come in
more informed or does it seemlike they're still, you know,

(08:50):
without information?

Speaker 2 (08:53):
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 seeingtheir nephrologist, who've been
having that conversation ofwhat's coming and being prepared
, tend to go and look on theinternet.

(09:15):
What is dialysis?
What is dialysis?
Learn what it's about.
Then we have probably about athird of the people that we get
who just end up in the ER andsuddenly they have this tunneled
catheter in their chest andthey're getting dialysis.
So those people don't seem toknow as much.

(09:35):
Thank God there are thosevideos available that people can
learn about it.
So if they have time in theirhospital bedroom as they're
getting dialysis, they can lookup what a center looks like and
different roles and what peopledo, what it's about, how long it
lasts.
I'm still surprised that a lotof people come into the dialysis
center and say how long doesthis treatment last?