March 15, 2024 • 16 mins
When you're handed a diagnosis that turns your life upside down, what's your next move? Fila, our remarkable guest, didn't just face his kidney transplant journey; he took charge of it, becoming a beacon of knowledge and hope. As we delve into Fila's intimate tale of resilience, you'll be captivated by his mastery over the medical treatments that have punctuated his life, from navigating dialysis to understanding complex procedures like IVIZ and Phereces. His story isn't just about survival; it's a testament to the power of patient advocacy and self-education, and it's one that anyone navigating their health or supporting a loved one can learn from.
Our conversation with Fila is more than an account of overcoming obstacles; it's a roadmap for any patient demanding better from the healthcare system. As we unwrap the disparities in care from Fila's first dialysis to his second, the impact of corporate shifts in healthcare becomes strikingly clear. But it's not just about the challenges; it's also about the pioneering medical trials and the progress they represent for transplant recipients like Fila. His experiences shed light on the importance of sharing these journeys, as they offer invaluable insights and inspire others to take an active role in their health. Tune in to hear how Fila's unyielding spirit and invaluable insights are carving a path for others to follow.
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 (00:15):
But what we tried to do was all the things I just
named the IVIZ, the PRA, the PRAand Phereces.
After we got transplanted, Ieven went on retulsion, which is
a chemotherapy drug.
It's part of the cocktail theygive you for cancer, right, and
(00:39):
I got real sickly.
And what happened was theyfound out that sometime when you
do these treatments after youtransplant, it's too hard on the
kidney to survive.
So that kidney transplant was areally good thing, and that was
the story of my second kidneytransplant right there, man, it
(01:03):
sounds like you you know you'veeducated yourself a lot through
the process.
Speaker 2 (01:07):
I mean just being able to explain the things that
you explained and all thedifferent drugs and all the
different processes Explain.
How did I mean?
Did you have to go outside anddo your own thing?
Did they give you thisinformation?
How did you come up?
How did you get your educationinto the whole process?
Speaker 1 (01:29):
Well, me personally my personality since the kid.
Even to this day, I'm the guythat always wants to know the
why.
You know how some guys are like, bro, let's move this process
alone.
This guy does this, this guydoes that, et cetera, et cetera.
Let's make it and go to thenext one.
I want to have my questionsanswered.
Okay, who's doing the lighting?
Who's the publisher?
You know, like who?
Who's the?
Who's the host?
Okay, who's the researcher?
(01:50):
I want to know, I want to meetthese people.
So I've always been like that.
So, as opposed to not only that,with it failing the first time
and the second time, I felt anobligation to myself to say hey,
wait a minute, what is there?
Something that you can add tothis?
By maybe you understandingwhat's going on, as opposed to
(02:10):
you just kind of like getting inthe seat, putting the seat belt
on and hope everything goesright, right.
So, from the perspective ofkind of like really wanting to
understand my own journey andwhat was happening to me and why
it was happening, it was themotivation to kind of make sense
of all of these turns and youknow, different things that were
(02:32):
going on so simultaneously thatmost of them wouldn't even want
to jump into the next one sosimultaneously that most
wouldn't even want to jump inthat endeavor, right?
But that was my motivation.
I was like, well, no matterwhat happens, if I be on
dialysis forever, I want tounderstand, okay, why, like what
happened, like right.
And so just trying to graspthat journey, that made me start
(02:56):
understanding the terms and Iwill write stuff down.
And then it started comingtogether kind of like a puzzle a
little bit.
I was like, okay, this doesthis and this does that and this
does this and that's why theyput you on dialysis and this is
how you don't cramp.
You know, these are some of thefoods you can still eat, how
you can take the potassium out.
It just almost was like a fightto have a normal lifestyle
(03:17):
mentally and physically.
That motivated me just to wantto understand it from a
practical standpoint, not somuch from like a, like a, like a
like a, like an almanacstandpoint or informational
standpoint, practical standpoint, you know what I mean.
And so I just started looking ateverything in pieces like a
puzzle and I started figuringout like, okay, this is how all
(03:39):
this stuff comes together, right, and that kind of motivate me
to just kind of like I kind offell in love with the
understanding of this dialysisthing and this kidney
transplanting and who plays whatrole.
You know it's like a movieproduction.
I wanted to know everybody whowas, from the executive down to
the guy in craft services.
(04:00):
I wanted to know everybody'srole and I went on that journey
to figure it out.
And there's still more to know.
But I just enjoyed the journeyof trying to grasp more
understanding of who plays whatrole and what's the priority of
these roles and things of thatnature.
Speaker 2 (04:17):
Right on.
So and Maurice, you can probablyspeak to this, but throughout
we've had conversations withother folks that have had
success in their treatments, andthe through line is
self-education.
And part of Maurice, when youcame to me initially, is that
people aren't being educatedthrough the system Right, and so
(04:40):
what we're trying to do interms of effect and change is
how do we incorporate or how dowe inspire the system to educate
the patient so that they getthe ease.
I mean not that it was easy foryou, but there was a certain
ease in your treatment where tome, it seems like you were never
a victim of your circumstance.
(05:02):
You were always because youknew what the process was, you
could take an active role in itand not feel like it was just
happening to you.
You know what I mean and,maurice, I don't know if you can
speak to that real quick interms of how your patients like
that are on dialysis, maybedon't know that they have like
(05:22):
there's no hope, and if thatmental state or that mindset
makes a difference in thetreatment.
Speaker 3 (05:30):
Well, it does, and I mean we know just from watching
people on dialysis that if theyknow more they have a better
outcome.
I mean, and that's the wholepoint, I don't understand why
they fight us on that, and youmight speak to that too, fila
what was, like the biggestdifference between, like the
first time you was on dialysisand then the second time you
(05:52):
went on dialysis, because thenthe second time around,
everything went corporate.
You know what I mean.
So did you see any differencesin treatment and how people
treated you the first timearound?
Then you did the second time.
Speaker 1 (06:08):
Well, I'm going to tell you one thing that I always
did.
I always got to know peoplelike you, like Paul Terry Y'all
kind of remind me the sameperson and I would always have
advocates Advocates.
You know what I mean, and it'ssuch an off-season moron between
prison and the real world.
But the lessons that I learnedin prison was it's kind of like
(06:32):
you have to network for survival, and I took that same mind.
State in Dallas is like I wouldbe networking with certain
physicians, you know, to thepoint to where I could see the
ones that were more or less likeyou don't know what you're
talking about and they wouldleave it at that.
But then I would see the onesthat were like no, you don't
(06:52):
really understand it yet, butlet me just help you understand.
Right, all the way to the pointwhere I had one of the, the
lead in the prologies out here,named Patricia Blake, and I had
her cell phone number.
We would talk all the time likefriends, right, and it's things
that she would tell me and,speaking on when you said things
were going corporate, she wouldjust tell me ahead of time like
things that were about tohappen or she would say I'm not
(07:13):
going to be at this unit, nomore, I'm going to.
I'm going to Colton, california.
So if you want to put in atransfer, and so to me it has a
lot to do with networking.
Like like once you figure outeverybody's role, like, say, you
having a problem with your dietor meal prep, but you be
friended to dietitians, or evenif you can't be friended to
(07:35):
dietitians the way you want, inyour unit there's a lot of
dietitians.
There's dietitians in justlocal hospitals.
There's dietitians that youknow they go to different
charities, you know you cancatch them online, you know you
can.
You can Google questions, youknow, and you can just start
kind of like being the CEO ofyour life, even though you have
(07:56):
these doctors and thesedietitians and these people in
the records and everybodyplaying their part.
It's almost like you build astandard for yourself, for your
quality.
It's like you know what I'mgoing to figure out how to get
the best diet, not just for mybody, but that I will want to
eat, and I'm going to.
If it won't be this dietitianthat tells me, maybe I'll just
(08:19):
look on Davidacom or forcinescomand watch their clips.
You know, maybe I'll go to.
I'll just type in dialysis.
You know, healthy living,cooking, you know, till I see
that chef, and then I'll startto meal prep with all these
meals, right, and then I'll putthat in conjunction with what
the dietitian tells me and Ikind of like fact check, like,
(08:41):
okay, well, this dietitian said,if you boil the potatoes for 10
minutes, you can take thepotassium out.
This one said you know, letthem sit overnight.
I'll try both ways, I'll seewhich way.
When I go into dialysis mypotassium high.
Oh, it's low.
Okay, then boiling them.
It works better for me and it'sfast, because sometimes I might
not want to do the overnightand wait on my french fries.
(09:01):
I might want to do the 10minute boil and make my french
fries right.
So I just started researchingjust to live like a more normal
life as I could.
And once I start having theseadvocates, like these physicians
and dietitians and the tech, Iwon't say they're more important
than them, but you guys arelike y'all.
(09:21):
If I could put this inpolitician's turn, you guys are
the lobbies.
Like I could go to you and say,hey, bro, you know, you think
you could talk to the dietitianand see if this and this and
that, you know I can't reallyafford this nutrition supplement
.
Can you see, maybe she'll meetwith me about getting an extra
one during the week, right, andmaybe me asking her, it'll just
be a flat no, because that's thestandard that she tell
(09:42):
everybody to ask.
But being that I was able to befree of you and you like me from
a personal standpoint and sheknows you from a personal
standpoint, it's almost likethat equity is transferable,
like I can't use my equity but Icould use my friend's equity
and y'all always interacting inthem hallways so you could say,
hey, let me talk to you for aminute.
(10:04):
Hey, you know, patient ColemanI'm not gonna ask you this for
everybody, but you know he'sreally trying to take care of
himself and you know he coulduse two of those, what they call
them, not nephropyte, notsussicale.
What's the Reno drink?
Speaker 3 (10:17):
They give us.
Oh, yeah, yeah, I know whatyou're talking about.
Speaker 1 (10:20):
And.
Speaker 3 (10:20):
Renovite is something one of those.
Renovite yeah, that's thevitamin, that's the vitamin.
Speaker 1 (10:26):
It'll come to me as we talking.
But you know like you couldpetition for me.
You know what I mean Becauseyou feel me and they feel you.
So I just started figuring outthe connections of the
relationships and kind of likehow to navigate towards getting
what I actually needed, you know, to move forward.
(10:46):
You know what I mean.
And once I started doing that,I had a better diet, my labs
were better, that pool wasn't sohard on me because I was
keeping the salt on my diet, Iwas using the Mrs Dash, you know
.
And dialysis was more like aninconvenience.
As far as time, that was thething.
It was when before it was liketime.
(11:09):
It was taking my energy.
I felt like my skin was lookingdifferent, my look was
different, it was taking, likemyself a scene.
Dialysis it was like a bigbattle.
But as we progressed throughthe rounds you know me, like
round two and round three orfour, I started kind of like
catching up a little bit.
It was a little more even fight, you know what I mean and I
(11:29):
just felt like, just by tryingto understand it better and who
played what role, I felt like myrole was almost to be like the
CEO over me, like I couldn'tcontrol nobody else's job, but I
had to control me and mybehaviors and my attitude
towards trying to get the thingsI need.
(11:52):
To make it through this.
You know what I mean.
Speaker 2 (11:54):
Yeah, absolutely yeah .
So I mean, you know what I'veseen through this and the
conversation with you, maurice,just that the technicians role
could be utilized so much betterin the process, right, like
you've gotten in trouble forbeing too much of an advocate
for people, right, because thesystem doesn't really I don't
(12:15):
know, from my perspectivedoesn't really want that, you
know.
So, you know, having thisconversation just brings a light
to me on the necessity of, youknow, technicians and patients
being able to work together tobe able to, you know the
technicians, like you said, likethat's the lobbyist, right,
(12:37):
that's the person that can goand actually affect change, and
it's actually, you know.
But people need to know whatyou just said, that they can,
you know, find the right.
You know you got to find theright people, because not
everybody is Maurice and noteverybody's Paul Terry, but I'm
sure they exist everywhere,right?
Speaker 3 (12:56):
Yeah, they do.
They do, I mean, and they finda way.
I mean we just find a way totalk to patients, like, like
Fila said, like we might catchyou outside the center and chop
it up with you and tell you man,look, this is what you got to
do.
Sometimes we can't do it insideof the facility, you know,
sometimes we can't have aconversation because, you know,
like you said, I don'tunderstand it, but they just
(13:20):
don't want us having thoseconversations that.
You know, I don't know why theydon't want patients empowered.
I mean, that's what this isabout.
We had to do this.
You know, this was a thing thatwas a necessity out of what I
see.
But you know, you would thinksome doctors want that and
others don't.
So it's like a mix.
I can't say it's all one way oryou know the other way.
(13:43):
You know, just hearing Fila'sstory, that empowers people,
that's going to give people away and it gives them an example
of what they can do.
They might add live there, theymight do it a little bit
different, but whatever worksfor them at least gives them a
basis to start from.
Speaker 2 (13:59):
Right on.
So we're going to start to bringthis to a close.
But, fila, I want to give youan opportunity to just like
speak to the audience and justsay you know some advice.
Like, if you you know when youfirst get started or if you're
looking for a transplant, youknow quickly and then you know
just, we want to have you backbecause I feel like you are a
(14:23):
great number one advocate forpatients.
You know what I mean For peoplethat are going through it, and
because you've gone through it,when we come up with issues that
we're talking about to have youknow how you know, like on CNN
they have this specialist youknow come on and like give their
commentary about whatever theissue is.
Like you're our expert, youknow from the patient side, so I
(14:46):
would love to have him back and, you know, definitely
appreciate all the like thestuff that you've said is stuff
that I haven't thought aboutbefore, so that's great, but
what would you like to say tofolks that are either getting
started or going through it,like, what's your advice?
Speaker 1 (15:04):
Okay, I'm going to get to that, but let me just
kind of finish this up.
It's kind of start backwards.
The third transplant rightafter that second transplant.
It lasted four months.
I went back on dialysis andonce again God intervened and my
wife knew a nurse she hadbefriended and they were good
(15:25):
friends at the unit and herhusband was going to Cedar Sinai
Medical Center out in LosAngeles to get a kidney
transplant and she had seen apaper.
It was just a little video,crumbled up paper and it said
hard of transplant.
Third transplants they werelooking for third plant
transplant participants to trythese new studies, these new
(15:49):
medicines.
They actually infuses, theystick a needle in your arm and
they're 30 minute infusions,called the lightest set and
class in the box.
And so she gave it to my wife.
She said hey, don't you justyour husband need another kidney
?
This would be his third kidney,right?
He should call these people.
But what we tried to do was all the things I just
named the IVIZ, the PRA, the PRAand Phereces.
After we got transplanted, Ieven went on retulsion, which is
a chemotherapy drug.
It's part of the cocktail theygive you for cancer, right, and
(00:39):
I got real sickly.
And what happened was theyfound out that sometime when you
do these treatments after youtransplant, it's too hard on the
kidney to survive.
So that kidney transplant was areally good thing, and that was
the story of my second kidneytransplant right there, man, it
(01:03):
sounds like you you know you'veeducated yourself a lot through
the process.
Speaker 2 (01:07):
I mean just being able to explain the things that
you explained and all thedifferent drugs and all the
different processes Explain.
How did I mean?
Did you have to go outside anddo your own thing?
Did they give you thisinformation?
How did you come up?
How did you get your educationinto the whole process?
Speaker 1 (01:29):
Well, me personally my personality since the kid.
Even to this day, I'm the guythat always wants to know the
why.
You know how some guys are like, bro, let's move this process
alone.
This guy does this, this guydoes that, et cetera, et cetera.
Let's make it and go to thenext one.
I want to have my questionsanswered.
Okay, who's doing the lighting?
Who's the publisher?
You know, like who?
Who's the?
Who's the host?
Okay, who's the researcher?
(01:50):
I want to know, I want to meetthese people.
So I've always been like that.
So, as opposed to not only that,with it failing the first time
and the second time, I felt anobligation to myself to say hey,
wait a minute, what is there?
Something that you can add tothis?
By maybe you understandingwhat's going on, as opposed to
(02:10):
you just kind of like getting inthe seat, putting the seat belt
on and hope everything goesright, right.
So, from the perspective ofkind of like really wanting to
understand my own journey andwhat was happening to me and why
it was happening, it was themotivation to kind of make sense
of all of these turns and youknow, different things that were
(02:32):
going on so simultaneously thatmost of them wouldn't even want
to jump into the next one sosimultaneously that most
wouldn't even want to jump inthat endeavor, right?
But that was my motivation.
I was like, well, no matterwhat happens, if I be on
dialysis forever, I want tounderstand, okay, why, like what
happened, like right.
And so just trying to graspthat journey, that made me start
(02:56):
understanding the terms and Iwill write stuff down.
And then it started comingtogether kind of like a puzzle a
little bit.
I was like, okay, this doesthis and this does that and this
does this and that's why theyput you on dialysis and this is
how you don't cramp.
You know, these are some of thefoods you can still eat, how
you can take the potassium out.
It just almost was like a fightto have a normal lifestyle
(03:17):
mentally and physically.
That motivated me just to wantto understand it from a
practical standpoint, not somuch from like a, like a, like a
like a, like an almanacstandpoint or informational
standpoint, practical standpoint, you know what I mean.
And so I just started looking ateverything in pieces like a
puzzle and I started figuringout like, okay, this is how all
(03:39):
this stuff comes together, right, and that kind of motivate me
to just kind of like I kind offell in love with the
understanding of this dialysisthing and this kidney
transplanting and who plays whatrole.
You know it's like a movieproduction.
I wanted to know everybody whowas, from the executive down to
the guy in craft services.
(04:00):
I wanted to know everybody'srole and I went on that journey
to figure it out.
And there's still more to know.
But I just enjoyed the journeyof trying to grasp more
understanding of who plays whatrole and what's the priority of
these roles and things of thatnature.
Speaker 2 (04:17):
Right on.
So and Maurice, you can probablyspeak to this, but throughout
we've had conversations withother folks that have had
success in their treatments, andthe through line is
self-education.
And part of Maurice, when youcame to me initially, is that
people aren't being educatedthrough the system Right, and so
(04:40):
what we're trying to do interms of effect and change is
how do we incorporate or how dowe inspire the system to educate
the patient so that they getthe ease.
I mean not that it was easy foryou, but there was a certain
ease in your treatment where tome, it seems like you were never
a victim of your circumstance.
(05:02):
You were always because youknew what the process was, you
could take an active role in itand not feel like it was just
happening to you.
You know what I mean and,maurice, I don't know if you can
speak to that real quick interms of how your patients like
that are on dialysis, maybedon't know that they have like
(05:22):
there's no hope, and if thatmental state or that mindset
makes a difference in thetreatment.
Speaker 3 (05:30):
Well, it does, and I mean we know just from watching
people on dialysis that if theyknow more they have a better
outcome.
I mean, and that's the wholepoint, I don't understand why
they fight us on that, and youmight speak to that too, fila
what was, like the biggestdifference between, like the
first time you was on dialysisand then the second time you
(05:52):
went on dialysis, because thenthe second time around,
everything went corporate.
You know what I mean.
So did you see any differencesin treatment and how people
treated you the first timearound?
Then you did the second time.
Speaker 1 (06:08):
Well, I'm going to tell you one thing that I always
did.
I always got to know peoplelike you, like Paul Terry Y'all
kind of remind me the sameperson and I would always have
advocates Advocates.
You know what I mean, and it'ssuch an off-season moron between
prison and the real world.
But the lessons that I learnedin prison was it's kind of like
(06:32):
you have to network for survival, and I took that same mind.
State in Dallas is like I wouldbe networking with certain
physicians, you know, to thepoint to where I could see the
ones that were more or less likeyou don't know what you're
talking about and they wouldleave it at that.
But then I would see the onesthat were like no, you don't
(06:52):
really understand it yet, butlet me just help you understand.
Right, all the way to the pointwhere I had one of the, the
lead in the prologies out here,named Patricia Blake, and I had
her cell phone number.
We would talk all the time likefriends, right, and it's things
that she would tell me and,speaking on when you said things
were going corporate, she wouldjust tell me ahead of time like
things that were about tohappen or she would say I'm not
(07:13):
going to be at this unit, nomore, I'm going to.
I'm going to Colton, california.
So if you want to put in atransfer, and so to me it has a
lot to do with networking.
Like like once you figure outeverybody's role, like, say, you
having a problem with your dietor meal prep, but you be
friended to dietitians, or evenif you can't be friended to
(07:35):
dietitians the way you want, inyour unit there's a lot of
dietitians.
There's dietitians in justlocal hospitals.
There's dietitians that youknow they go to different
charities, you know you cancatch them online, you know you
can.
You can Google questions, youknow, and you can just start
kind of like being the CEO ofyour life, even though you have
(07:56):
these doctors and thesedietitians and these people in
the records and everybodyplaying their part.
It's almost like you build astandard for yourself, for your
quality.
It's like you know what I'mgoing to figure out how to get
the best diet, not just for mybody, but that I will want to
eat, and I'm going to.
If it won't be this dietitianthat tells me, maybe I'll just
(08:19):
look on Davidacom or forcinescomand watch their clips.
You know, maybe I'll go to.
I'll just type in dialysis.
You know, healthy living,cooking, you know, till I see
that chef, and then I'll startto meal prep with all these
meals, right, and then I'll putthat in conjunction with what
the dietitian tells me and Ikind of like fact check, like,
(08:41):
okay, well, this dietitian said,if you boil the potatoes for 10
minutes, you can take thepotassium out.
This one said you know, letthem sit overnight.
I'll try both ways, I'll seewhich way.
When I go into dialysis mypotassium high.
Oh, it's low.
Okay, then boiling them.
It works better for me and it'sfast, because sometimes I might
not want to do the overnightand wait on my french fries.
(09:01):
I might want to do the 10minute boil and make my french
fries right.
So I just started researchingjust to live like a more normal
life as I could.
And once I start having theseadvocates, like these physicians
and dietitians and the tech, Iwon't say they're more important
than them, but you guys arelike y'all.
(09:21):
If I could put this inpolitician's turn, you guys are
the lobbies.
Like I could go to you and say,hey, bro, you know, you think
you could talk to the dietitianand see if this and this and
that, you know I can't reallyafford this nutrition supplement
.
Can you see, maybe she'll meetwith me about getting an extra
one during the week, right, andmaybe me asking her, it'll just
be a flat no, because that's thestandard that she tell
(09:42):
everybody to ask.
But being that I was able to befree of you and you like me from
a personal standpoint and sheknows you from a personal
standpoint, it's almost likethat equity is transferable,
like I can't use my equity but Icould use my friend's equity
and y'all always interacting inthem hallways so you could say,
hey, let me talk to you for aminute.
(10:04):
Hey, you know, patient ColemanI'm not gonna ask you this for
everybody, but you know he'sreally trying to take care of
himself and you know he coulduse two of those, what they call
them, not nephropyte, notsussicale.
What's the Reno drink?
Speaker 3 (10:17):
They give us.
Oh, yeah, yeah, I know whatyou're talking about.
Speaker 1 (10:20):
And.
Speaker 3 (10:20):
Renovite is something one of those.
Renovite yeah, that's thevitamin, that's the vitamin.
Speaker 1 (10:26):
It'll come to me as we talking.
But you know like you couldpetition for me.
You know what I mean Becauseyou feel me and they feel you.
So I just started figuring outthe connections of the
relationships and kind of likehow to navigate towards getting
what I actually needed, you know, to move forward.
(10:46):
You know what I mean.
And once I started doing that,I had a better diet, my labs
were better, that pool wasn't sohard on me because I was
keeping the salt on my diet, Iwas using the Mrs Dash, you know
.
And dialysis was more like aninconvenience.
As far as time, that was thething.
It was when before it was liketime.
(11:09):
It was taking my energy.
I felt like my skin was lookingdifferent, my look was
different, it was taking, likemyself a scene.
Dialysis it was like a bigbattle.
But as we progressed throughthe rounds you know me, like
round two and round three orfour, I started kind of like
catching up a little bit.
It was a little more even fight, you know what I mean and I
(11:29):
just felt like, just by tryingto understand it better and who
played what role, I felt like myrole was almost to be like the
CEO over me, like I couldn'tcontrol nobody else's job, but I
had to control me and mybehaviors and my attitude
towards trying to get the thingsI need.
(11:52):
To make it through this.
You know what I mean.
Speaker 2 (11:54):
Yeah, absolutely yeah .
So I mean, you know what I'veseen through this and the
conversation with you, maurice,just that the technicians role
could be utilized so much betterin the process, right, like
you've gotten in trouble forbeing too much of an advocate
for people, right, because thesystem doesn't really I don't
(12:15):
know, from my perspectivedoesn't really want that, you
know.
So, you know, having thisconversation just brings a light
to me on the necessity of, youknow, technicians and patients
being able to work together tobe able to, you know the
technicians, like you said, likethat's the lobbyist, right,
(12:37):
that's the person that can goand actually affect change, and
it's actually, you know.
But people need to know whatyou just said, that they can,
you know, find the right.
You know you got to find theright people, because not
everybody is Maurice and noteverybody's Paul Terry, but I'm
sure they exist everywhere,right?
Speaker 3 (12:56):
Yeah, they do.
They do, I mean, and they finda way.
I mean we just find a way totalk to patients, like, like
Fila said, like we might catchyou outside the center and chop
it up with you and tell you man,look, this is what you got to
do.
Sometimes we can't do it insideof the facility, you know,
sometimes we can't have aconversation because, you know,
like you said, I don'tunderstand it, but they just
(13:20):
don't want us having thoseconversations that.
You know, I don't know why theydon't want patients empowered.
I mean, that's what this isabout.
We had to do this.
You know, this was a thing thatwas a necessity out of what I
see.
But you know, you would thinksome doctors want that and
others don't.
So it's like a mix.
I can't say it's all one way oryou know the other way.
(13:43):
You know, just hearing Fila'sstory, that empowers people,
that's going to give people away and it gives them an example
of what they can do.
They might add live there, theymight do it a little bit
different, but whatever worksfor them at least gives them a
basis to start from.
Speaker 2 (13:59):
Right on.
So we're going to start to bringthis to a close.
But, fila, I want to give youan opportunity to just like
speak to the audience and justsay you know some advice.
Like, if you you know when youfirst get started or if you're
looking for a transplant, youknow quickly and then you know
just, we want to have you backbecause I feel like you are a
(14:23):
great number one advocate forpatients.
You know what I mean For peoplethat are going through it, and
because you've gone through it,when we come up with issues that
we're talking about to have youknow how you know, like on CNN
they have this specialist youknow come on and like give their
commentary about whatever theissue is.
Like you're our expert, youknow from the patient side, so I
(14:46):
would love to have him back and, you know, definitely
appreciate all the like thestuff that you've said is stuff
that I haven't thought aboutbefore, so that's great, but
what would you like to say tofolks that are either getting
started or going through it,like, what's your advice?
Speaker 1 (15:04):
Okay, I'm going to get to that, but let me just
kind of finish this up.
It's kind of start backwards.
The third transplant rightafter that second transplant.
It lasted four months.
I went back on dialysis andonce again God intervened and my
wife knew a nurse she hadbefriended and they were good
(15:25):
friends at the unit and herhusband was going to Cedar Sinai
Medical Center out in LosAngeles to get a kidney
transplant and she had seen apaper.
It was just a little video,crumbled up paper and it said
hard of transplant.
Third transplants they werelooking for third plant
transplant participants to trythese new studies, these new
(15:49):
medicines.
They actually infuses, theystick a needle in your arm and
they're 30 minute infusions,called the lightest set and
class in the box.
And so she gave it to my wife.
She said hey, don't you justyour husband need another kidney
?
This would be his third kidney,right?
He should call these people.
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