March 3, 2024 • 12 mins
Imagine facing a life-altering illness with no insurance to cushion the fall. That is the stark reality our guest courageously navigates as they share their raw and stirring tale of kidney failure. This episode peels back the layers of emotion and hardship that come with a serious diagnosis, the immense pressure of balancing work, and the unforeseen impacts on family life. Listen as we unpack the critical turn of events, from dealing with a lung collapse to the power of self-advocacy amidst an often indifferent medical bureaucracy. Our discussion also shines a light on the surprising sources of support that can emerge in times of need, revealing the resilience and adaptability of the human spirit in the face of adversity.
Setting off on a journey with dialysis isn't just a logistical challenge; it's an odyssey that tests the limits of what we believe is possible. Our guest recounts their remarkable experiences of traversing the globe, managing dialysis, and the stark contrasts in healthcare experiences from one U.S. state to another. You'll be inspired by the determination to live life without bounds and the ingenuity required to plan travel with medical baggage in tow. As we explore the diverse healthcare landscapes from Pennsylvania to Florida, we uncover the broader implications for dialysis care and the urgent need for systemic change. Tune in to this compelling episode that not only raises awareness but also serves as a beacon of hope and guidance for anyone facing similar challenges.
With hosts Maurice Carlisle and Ira McAliley
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:12):
Some things are lost in translation or something, I
don't know, but it's just been alittle bit of a problem.
I do have contact with theclinic, though.
If they call me.
(00:33):
They'll call and check in orask me questions.
Now the problem I'm reallyhaving is insurance.
I have no insurance so I don'tknow.
We're going to figure it out,they will figure it out.
Speaker 2 (00:45):
They will.
Speaker 1 (00:46):
Yeah.
Speaker 2 (00:47):
Okay, and I just have one more question for you.
When you were diagnosed withkidney failure, me and Ira spoke
, and we were embarking on thisprocess, and I called you, and
so I want you to share with mehow you were feeling at that
moment, if you can just kind ofsum that up, and why you didn't
(01:10):
want to return my call.
Speaker 1 (01:12):
Are you going to return your call?
Speaker 2 (01:14):
No.
Speaker 1 (01:17):
I wonder if I was just not happy.
I wonder if that was when I wason e-mail.
Speaker 2 (01:20):
Yeah, I'm not sure I think it was before.
It was before.
Speaker 3 (01:26):
I think we tried to get to before it happened
because, remember, you were toldthat you were down to like 15%
and we were starting to dostarting to work on this
documentary, and Maurice wantedto try to get you, to get you
before you hit end stage.
Speaker 1 (01:40):
Okay, Well, I was already in end stage right in
the middle of it, and then whenI went on the cruise, it was
like I came off the cruise, likeI went on the cruise on my
birthday week, so I'm off toOctober 20th and I'm thinking,
probably it was like probablyabout a week and a half later I
was in the hospital.
So I wasn't happy with anybody.
And then, like, mind you, likemy mindset at that time was not
(02:03):
good, because I'm not evenemotional, I don't like the soul
of Fred, winner of my family,and I spent a lot of time in the
dodging this whole situationbecause I needed to take care of
my family.
So just to think like within aday and I don't save money, I
hate to say it, I don't.
(02:23):
Thank God, I have a wonderfuljob.
I had a wonderful job thatsaved money for me and took it
out, even though I didn't wantit to.
We negotiated as a whole otherdiscussion but I had no plan of
what I was going to do, like ifwe just had to live off my
husband's social security.
So it was very scary and I eventried to work my second job
(02:51):
because I was a therapist.
I was struggling, trying tojust bring in some money.
I have six children and I'malways trying to help out.
(03:13):
I started to see a light at theend of the tunnel.
I was sitting in the hospitalroom and I thought I was going
to die.
The first weekend that this allhappened, I really thought my
life was over.
I thought that it was only amatter of days before I died.
I didn't think that I couldlive with this, and then some
(03:36):
nurse came in and was talking tome.
It was like oh yeah, you canwork and do XYZ, and I was like
you can.
So once I realized that I coulddo stuff and have a life and be
able to live with it, then Ikind of felt a little bit better
because I was like and thenwhen I, when my local collapsed,
that was kind of a sadsituation because I think it
(03:59):
collapsed like on a WednesdayI'm sorry.
I went to the hospital on aWednesday it was the week before
and I remember going to the ER.
The doctor called me and waslike, go to ER now?
And I was like what do you mean?
Go to ER?
Because it almost didn't evenget diagnosed, because the
doctor was going to send me home.
I asked him to do a chest X-rayand because I had I thought it
(04:22):
was congestive heart failureagain and he was like all right,
we can do chest X-ray.
So he did the chest X-ray andfound out that my lung was
collapsed.
So I probably would have beendead if I didn't request it.
Here I go, do my own thing, youknow, controlling everything.
So then I went to the hospitaland I was like well, can we fix
this by like Monday, because Idon't have any more sick time at
(04:43):
work and they were like oh yeah, all right, so you're going to
see here and we'll talk to youlater about all that.
Speaker 3 (04:51):
And I was like I'm serious.
Speaker 1 (04:52):
I need to go back to work on Monday because I just
got off the work.
I just came back to work, Ihave no sick time and they're
looking at me like maybe you'regoing to be off for a little bit
.
But I didn't want to tell meBecause once again it's a guy
for Aflac and I had signed onand I got it twice in a year,
which is odd Because I had twodifferent circumstances.
(05:13):
So that helped me keep my billspaid and prayer and paying
everything ahead of time.
I just really was trying to becreative on how to like keep
everything afloat.
I have wonderful adult childrenand I'm going to be honest with
you my one adult child wasactually 17 and my other one was
18 and they took this off andwas actually helping me get
(05:37):
stuff paid.
It was amazing, like what theydid for me.
Bye, eventually I just kind ofsaid you know what I'm going to
let it go and just figure out,like just take care of myself
and see what happens.
It was that you know, stuck outon faith, things that I'm not
really good at doing.
And then my husband.
I actually listened to myhusband for a long time.
(05:58):
I did apply for Social Security.
So I kept telling him likeright, I'm not going to give me
anything.
I made too much money, like,just leave it alone.
And I was like fine, I appliedand they approved me right away.
Which was like what.
Like I didn't think that becauseI know, like I'm a social
worker, I know what they doThey'll give me the run around.
I've had clients that have beendenied so I just knew they were
going to deny me.
(06:18):
They were like no, yeah, you'reso that kind of told me I
wasn't doing too well.
Yeah, well my mindset now is Iknow that there's, I can live
with it.
The way I was feeling back thenwas, I thought, end statement
like I need to get a burrowedplot, and that's where my mind
(06:40):
was to be honest with you.
Speaker 2 (06:43):
Okay, thank you so much for sharing, because there
are so many people out therethat felt like you did and I
know they do because I see themevery day and that's why we're
doing this and I just soappreciate you sharing with us
like I really do, and it's beena blessing to talk to you today.
It really has.
I'm sorry if I treated you acertain kind of way back in the
(07:05):
day.
So not at all.
We just wanted to document that.
I just wanted other people toknow why people feel that way,
and otherwise I wouldn't haveasked you.
That's right.
That's right and as you shouldbe.
Yes, yes, I'm so glad you'redoing better.
(07:25):
It is such a pleasure to meetyou and I'm glad you're doing
better and you do a great jobwith PD, and that's good.
Speaker 3 (07:33):
Thank you, thank you, yeah, and I love you and we're
going to, as this develops Iknow we talked at a point maybe,
if you're doing like a dailydiary, like a video diary and
you know, just document yourselfand what you're up to and some
of the things that come up foryou, okay, well, yeah.
Speaker 1 (07:51):
I could document, because you know I'm going away.
Speaker 3 (07:54):
Yeah, yeah.
Speaker 1 (07:55):
Oh Lord, I'm a little concerned about that.
We're going to Europe for amonth and I don't know how
that's going to work out.
Speaker 2 (08:02):
Yeah, I mean.
Because we have to bring ourown fluid?
Yeah, you have to ship it over.
Speaker 1 (08:07):
We're ship.
We can only ship to one country.
Speaker 2 (08:10):
Oh, wow.
Speaker 1 (08:10):
So I'm only shipping it to Berlin, and we are my
husband is carrying 36, uh, twoliter bags in this big
behind-the-scenes case and I'mgoing to pray that I can.
They'll have enough fluid toget me through until.
Berlin.
Speaker 2 (08:30):
Okay, yeah.
Speaker 1 (08:30):
It's just, it's ridiculous and that's the kind
of stuff like especially becausemy company is international,
uh-huh, and so you would thinkit would be easy for me just to
have fluids sent, and actuallythe CEO, coo of my dialysis
center said the same thing.
It's like that doesn't make anysense.
We have companies in thecountries you're going to.
Why can't we just get the fluid?
(08:51):
So that's, it's red tape, thatbureaucracy stuff.
So I would, I would love to doa documentary, like a little
video thing Over there and thatwhole process and also to help
people understand that they cantravel.
And I'm gonna tell you, I knowI'm gonna be tired.
I get tired quickly.
That is an issue for me.
I do get real tired.
I still think I could do stuffUntil I get half way down the
(09:14):
beach and then I got to get backand then I'm like out of breath
.
And it's really hard for me.
I'm ready to pass out, so Ihave to remember, like I can't
walk all over London like I didten years ago, that's just, I'm
not, and I'm not that young, soI can't do that anymore.
So that I can definitely dothat for you.
Speaker 3 (09:34):
Yes, please, that'd be great because I think it'll
be.
I mean, this whole thing isunfolding.
We just kind of started today,but it's unfolding nicely and I
think that that will be a reallyintricate, integral part of
this.
Because you know, just that'spart of what we're gonna do.
We're gonna tour the countryand then round to the world and
(09:57):
just see how people are doing.
Like the title is what's thedeal with dialysis?
And so Show us what your dealis, what you, how you're coping,
how you're dealing, you knowhow you are, what you're finding
out about the bureaucracies inthe red tape, because we know
it's out there and People needto be, and part of the issue for
people is they're not aware,like nobody knows, like nobody's
(10:20):
been given the information, andyou said that earlier very
nicely, that people aren'ttalking to each other.
Right, and it seems like itshould be simple, but it's not
happening and we're trying toaffect a change in those best
practices.
Speaker 1 (10:35):
So I think the biggest issue for me is since
I've been here in Florida is andI'm not trying to get political
, but it is a politicalsituation I came from a
Democratic State of Pennsylvaniawith a Democratic governor.
I had good insurance, eventhrough my job, but there was
Medicaid expansion, which waspart of the Affordable Care Act.
(10:57):
So I was eligible as a dialysispatient for Medicaid there
Moves, here it's a it's aRepublican governor who did not
sign on to Medicaid expansion soI am not eligible for a jack
and the only people that can getlike even like I'm on Medicare
through Social Security but Ihave not eligible for any of the
(11:21):
supplements because I don'thave HIV, nor do I have diabetes
.
Those are the only two specialDiagnosis that have a specialty
Available insurance.
I was like it's interesting.
So I'm not eligible for it.
I'm not eligible for publicassistance, I'm not eligible for
anything.
Speaker 2 (11:41):
Well, you know, in 1972 there was the Social
Security Healthcare Act theNixon signed for dialysis
patients.
So I am blown away that Floridais Not allowing that to happen,
because within stage renaldisease, 90 days after you're
diagnosed, your primaryinsurance gets to walk away and
(12:03):
Medicare and Medicaid Pick it up.
And so it's interesting to seethe Florida doesn't do that.
Speaker 1 (12:08):
I haven't talked to a gentleman standing outside the
public trying to sign Medicarepage you.
Some things are lost in translation or something, I
don't know, but it's just been alittle bit of a problem.
I do have contact with theclinic, though.
If they call me.
(00:33):
They'll call and check in orask me questions.
Now the problem I'm reallyhaving is insurance.
I have no insurance so I don'tknow.
We're going to figure it out,they will figure it out.
Speaker 2 (00:45):
They will.
Speaker 1 (00:46):
Yeah.
Speaker 2 (00:47):
Okay, and I just have one more question for you.
When you were diagnosed withkidney failure, me and Ira spoke
, and we were embarking on thisprocess, and I called you, and
so I want you to share with mehow you were feeling at that
moment, if you can just kind ofsum that up, and why you didn't
(01:10):
want to return my call.
Speaker 1 (01:12):
Are you going to return your call?
Speaker 2 (01:14):
No.
Speaker 1 (01:17):
I wonder if I was just not happy.
I wonder if that was when I wason e-mail.
Speaker 2 (01:20):
Yeah, I'm not sure I think it was before.
It was before.
Speaker 3 (01:26):
I think we tried to get to before it happened
because, remember, you were toldthat you were down to like 15%
and we were starting to dostarting to work on this
documentary, and Maurice wantedto try to get you, to get you
before you hit end stage.
Speaker 1 (01:40):
Okay, Well, I was already in end stage right in
the middle of it, and then whenI went on the cruise, it was
like I came off the cruise, likeI went on the cruise on my
birthday week, so I'm off toOctober 20th and I'm thinking,
probably it was like probablyabout a week and a half later I
was in the hospital.
So I wasn't happy with anybody.
And then, like, mind you, likemy mindset at that time was not
(02:03):
good, because I'm not evenemotional, I don't like the soul
of Fred, winner of my family,and I spent a lot of time in the
dodging this whole situationbecause I needed to take care of
my family.
So just to think like within aday and I don't save money, I
hate to say it, I don't.
(02:23):
Thank God, I have a wonderfuljob.
I had a wonderful job thatsaved money for me and took it
out, even though I didn't wantit to.
We negotiated as a whole otherdiscussion but I had no plan of
what I was going to do, like ifwe just had to live off my
husband's social security.
So it was very scary and I eventried to work my second job
(02:51):
because I was a therapist.
I was struggling, trying tojust bring in some money.
I have six children and I'malways trying to help out.
(03:13):
I started to see a light at theend of the tunnel.
I was sitting in the hospitalroom and I thought I was going
to die.
The first weekend that this allhappened, I really thought my
life was over.
I thought that it was only amatter of days before I died.
I didn't think that I couldlive with this, and then some
(03:36):
nurse came in and was talking tome.
It was like oh yeah, you canwork and do XYZ, and I was like
you can.
So once I realized that I coulddo stuff and have a life and be
able to live with it, then Ikind of felt a little bit better
because I was like and thenwhen I, when my local collapsed,
that was kind of a sadsituation because I think it
(03:59):
collapsed like on a WednesdayI'm sorry.
I went to the hospital on aWednesday it was the week before
and I remember going to the ER.
The doctor called me and waslike, go to ER now?
And I was like what do you mean?
Go to ER?
Because it almost didn't evenget diagnosed, because the
doctor was going to send me home.
I asked him to do a chest X-rayand because I had I thought it
(04:22):
was congestive heart failureagain and he was like all right,
we can do chest X-ray.
So he did the chest X-ray andfound out that my lung was
collapsed.
So I probably would have beendead if I didn't request it.
Here I go, do my own thing, youknow, controlling everything.
So then I went to the hospitaland I was like well, can we fix
this by like Monday, because Idon't have any more sick time at
(04:43):
work and they were like oh yeah, all right, so you're going to
see here and we'll talk to youlater about all that.
Speaker 3 (04:51):
And I was like I'm serious.
Speaker 1 (04:52):
I need to go back to work on Monday because I just
got off the work.
I just came back to work, Ihave no sick time and they're
looking at me like maybe you'regoing to be off for a little bit
.
But I didn't want to tell meBecause once again it's a guy
for Aflac and I had signed onand I got it twice in a year,
which is odd Because I had twodifferent circumstances.
(05:13):
So that helped me keep my billspaid and prayer and paying
everything ahead of time.
I just really was trying to becreative on how to like keep
everything afloat.
I have wonderful adult childrenand I'm going to be honest with
you my one adult child wasactually 17 and my other one was
18 and they took this off andwas actually helping me get
(05:37):
stuff paid.
It was amazing, like what theydid for me.
Bye, eventually I just kind ofsaid you know what I'm going to
let it go and just figure out,like just take care of myself
and see what happens.
It was that you know, stuck outon faith, things that I'm not
really good at doing.
And then my husband.
I actually listened to myhusband for a long time.
(05:58):
I did apply for Social Security.
So I kept telling him likeright, I'm not going to give me
anything.
I made too much money, like,just leave it alone.
And I was like fine, I appliedand they approved me right away.
Which was like what.
Like I didn't think that becauseI know, like I'm a social
worker, I know what they doThey'll give me the run around.
I've had clients that have beendenied so I just knew they were
going to deny me.
(06:18):
They were like no, yeah, you'reso that kind of told me I
wasn't doing too well.
Yeah, well my mindset now is Iknow that there's, I can live
with it.
The way I was feeling back thenwas, I thought, end statement
like I need to get a burrowedplot, and that's where my mind
(06:40):
was to be honest with you.
Speaker 2 (06:43):
Okay, thank you so much for sharing, because there
are so many people out therethat felt like you did and I
know they do because I see themevery day and that's why we're
doing this and I just soappreciate you sharing with us
like I really do, and it's beena blessing to talk to you today.
It really has.
I'm sorry if I treated you acertain kind of way back in the
(07:05):
day.
So not at all.
We just wanted to document that.
I just wanted other people toknow why people feel that way,
and otherwise I wouldn't haveasked you.
That's right.
That's right and as you shouldbe.
Yes, yes, I'm so glad you'redoing better.
(07:25):
It is such a pleasure to meetyou and I'm glad you're doing
better and you do a great jobwith PD, and that's good.
Speaker 3 (07:33):
Thank you, thank you, yeah, and I love you and we're
going to, as this develops Iknow we talked at a point maybe,
if you're doing like a dailydiary, like a video diary and
you know, just document yourselfand what you're up to and some
of the things that come up foryou, okay, well, yeah.
Speaker 1 (07:51):
I could document, because you know I'm going away.
Speaker 3 (07:54):
Yeah, yeah.
Speaker 1 (07:55):
Oh Lord, I'm a little concerned about that.
We're going to Europe for amonth and I don't know how
that's going to work out.
Speaker 2 (08:02):
Yeah, I mean.
Because we have to bring ourown fluid?
Yeah, you have to ship it over.
Speaker 1 (08:07):
We're ship.
We can only ship to one country.
Speaker 2 (08:10):
Oh, wow.
Speaker 1 (08:10):
So I'm only shipping it to Berlin, and we are my
husband is carrying 36, uh, twoliter bags in this big
behind-the-scenes case and I'mgoing to pray that I can.
They'll have enough fluid toget me through until.
Berlin.
Speaker 2 (08:30):
Okay, yeah.
Speaker 1 (08:30):
It's just, it's ridiculous and that's the kind
of stuff like especially becausemy company is international,
uh-huh, and so you would thinkit would be easy for me just to
have fluids sent, and actuallythe CEO, coo of my dialysis
center said the same thing.
It's like that doesn't make anysense.
We have companies in thecountries you're going to.
Why can't we just get the fluid?
(08:51):
So that's, it's red tape, thatbureaucracy stuff.
So I would, I would love to doa documentary, like a little
video thing Over there and thatwhole process and also to help
people understand that they cantravel.
And I'm gonna tell you, I knowI'm gonna be tired.
I get tired quickly.
That is an issue for me.
I do get real tired.
I still think I could do stuffUntil I get half way down the
(09:14):
beach and then I got to get backand then I'm like out of breath
.
And it's really hard for me.
I'm ready to pass out, so Ihave to remember, like I can't
walk all over London like I didten years ago, that's just, I'm
not, and I'm not that young, soI can't do that anymore.
So that I can definitely dothat for you.
Speaker 3 (09:34):
Yes, please, that'd be great because I think it'll
be.
I mean, this whole thing isunfolding.
We just kind of started today,but it's unfolding nicely and I
think that that will be a reallyintricate, integral part of
this.
Because you know, just that'spart of what we're gonna do.
We're gonna tour the countryand then round to the world and
(09:57):
just see how people are doing.
Like the title is what's thedeal with dialysis?
And so Show us what your dealis, what you, how you're coping,
how you're dealing, you knowhow you are, what you're finding
out about the bureaucracies inthe red tape, because we know
it's out there and People needto be, and part of the issue for
people is they're not aware,like nobody knows, like nobody's
(10:20):
been given the information, andyou said that earlier very
nicely, that people aren'ttalking to each other.
Right, and it seems like itshould be simple, but it's not
happening and we're trying toaffect a change in those best
practices.
Speaker 1 (10:35):
So I think the biggest issue for me is since
I've been here in Florida is andI'm not trying to get political
, but it is a politicalsituation I came from a
Democratic State of Pennsylvaniawith a Democratic governor.
I had good insurance, eventhrough my job, but there was
Medicaid expansion, which waspart of the Affordable Care Act.
(10:57):
So I was eligible as a dialysispatient for Medicaid there
Moves, here it's a it's aRepublican governor who did not
sign on to Medicaid expansion soI am not eligible for a jack
and the only people that can getlike even like I'm on Medicare
through Social Security but Ihave not eligible for any of the
(11:21):
supplements because I don'thave HIV, nor do I have diabetes
.
Those are the only two specialDiagnosis that have a specialty
Available insurance.
I was like it's interesting.
So I'm not eligible for it.
I'm not eligible for publicassistance, I'm not eligible for
anything.
Speaker 2 (11:41):
Well, you know, in 1972 there was the Social
Security Healthcare Act theNixon signed for dialysis
patients.
So I am blown away that Floridais Not allowing that to happen,
because within stage renaldisease, 90 days after you're
diagnosed, your primaryinsurance gets to walk away and
(12:03):
Medicare and Medicaid Pick it up.
And so it's interesting to seethe Florida doesn't do that.
Speaker 1 (12:08):
I haven't talked to a gentleman standing outside the
public trying to sign Medicarepage you.
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