From Navy Vet to National Advocate: Kidney Disease A Fight For Your Life

Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Keith D. Terry (00:00):
Welcome to the podcast the Next Big Thing.
I'm your host, keith D Terry, aconsultant, a coach and a
serial entrepreneur.
The mission here is to teach,inspire and to motivate Today's
episode.
I'm particularly excited aboutit because of its importance.
We're going to be talking aboutkidney disease.

(00:20):
Kidney disease is one of themost overlooked public health
crises in America and, I wouldeven say, the world.
It affects an estimated 37million people in this country.
But here's the kicker Nine outof 10 of them don't even know
that they have an issue.
And when they find out thatthey have an issue, it's often

(00:40):
too late.
The kidneys, those twofist-sized powerhouses that
filter our blood, regulatecritical function like blood
pressure and bone health, canquietly fail without warning.
Now the history of kidneydisease shifts to dialysis.
The life-extending treatmentfor kidney failure only became

(01:01):
available check this out 1970.
The first successful kidneytransplant wasn't until 1954.
And even today, kidney carecontinues to lag behind other
major diseases in innovation,funding and public awareness.
Despite the massive impact, itjust doesn't get the attention

(01:22):
it deserves.
Now then there's the harshreality of organ donation.
Right now, over 90,000 peoplein the United States are waiting
for a kidney transplant, butonly 25,000 to 30,000, get one
each year.
This means that thousands ofpeople die and suffer, and if

(01:43):
you're a person of color, theodds are even worse due to
systemic disparities in healthaccess and donor matching.
Now let's turn our attention toveterans, those who put their
lives on the line for ourfreedom.
Many of them, like our guesttoday, are dealing with the
fallout from toxic exposureduring their service.
The exposure can triggerchronic illness, including rare

(02:06):
and deadly kidney disease, and,until recently, the system the
VA routinely denied claimsconnecting the illness to their
military service.
This brings us to ourconversation today.
You're about to meet DanielHolmes.
He's a Navy combat search andrescue veteran who took his rare
kidney disease diagnosis andturned it into a national

(02:29):
movement.
Now let me spend a few momentsintroducing Daniel to you,
because I'm excited.
I was impressed when I met himand I'm more impressed as I've
gotten to know him and hisbackground.
A couple of things, daniel.
Like I said, daniel Holmes is aformer combat search and rescue
operator, a NEFCURE 2024 ImpactAward recipient and one of the

(02:51):
nation's most influential kidneydisease advocates, and we're
going to talk about how thathappened Now.
It all started in April 2020when Dan was diagnosed with
membranous nephropathy, a rareand incurable kidney disease.
Doctors gave him little hope,but surrender was not in this

(03:14):
man's DNA.
As he fought for his ownsurvival, dan uncovered another
injustice His disease was linkedto toxic exposure during his
military service.
Yet the VA repeatedly deniedhis claims.
Daniel took his fight to thehighest levels before the FDA.
Check this out the FDA, the NIH, the National Board of

(03:35):
Nephrology, congress advocatingfor policy changes in kidney
disease.
His journey has been marked bya journey no-transcript.

(04:11):
My friend.

Daniel Holmes (04:12):
Man.
Let me start.
Thank you, keith, for having me.
Brother, I'm doing good, man,I'm doing good Today.
I feel great.
I feel great.

Thanks for asking that's good, so walk us
through the moment when you gotyour diagnosis.
What went through your mind andwhat did you say to yourself?

Well, I don't think we ever really prepare
ourselves to mentally acceptsome news like that or a
terminal diagnosis.
You know, when I said it tomyself it was the height of
COVID, Right.
So when I got this diagnosis,my family couldn't necessarily
be there with me.
When I got this diagnosis, myfamily couldn't necessarily be
there with me.
So I had to process thisinformation myself and as I

(04:48):
process that information I'mthinking where's the medicine?
Man, you know what I mean.
Like, hey, you got the flu,let's get rid of it.
You got this, let's take themedication that starts the
treatment program and kind ofget rid of this.
They're like, oh, you got somekidney disease.
So it was a process.
I didn't know.
I was undereducated.
I was significantlyundereducated about kidney

(05:09):
disease.
Man, I had never my grandmotherhad dealt with some kidney
issues growing up, was ondialysis for a long time and
ultimately ended up passing away.
But you know, I never reallythought anything about it, Just
kind of thought well, you know,maybe she drank a lot or, you
know, maybe just people get sick, I'm not sure.
But I've always been a healthyguy, you know what I mean,

(05:30):
Always been tip top shape.
So this was something new to mesomething that I had to really
figure out how to process.

Well, people don't know this, but when I
first I met Daniel at the 2025NIF cure conference and you know
he's not a little man forlistening public and he walked
up and he's this perfect lookingspecimen and you know then you
get to know his story and whathe's fighting for.
It's quite impressive.
But before we get to some ofthe deeper stuff, where do you

(05:59):
come from?
Help folks to get to know you alittle bit.
Where are you from, daniel?

Awesome, I appreciate that question, man.
I'm originally from Baltimore,maryland, man.
I grew up in Baltimore.
I grew up in Columbia,specifically in an area called
Howard County.
Okay, so I was raised there,great education system.
You know, both mom and dadworked for the Army at the time.
You know, mom was at thePentagon, dad was doing his
thing in the army and so grew upin Baltimore and then went to

(06:27):
high school in Baltimore andthen ended up leaving for the
Navy Saying hi to Uncle Sam.

Now tell us a little bit about your military
service.
Now you were in how long beforeall of this kind of started?

Yeah, man, this thing was crazy.
So, again, my military service.
Let me just put that out there,that my military service I
didn't really connect anythingwith kidneys at the time Right.
So joined the military.
Healthy guy, went through themilitary, got out of the
military in 2008.
Again, what I felt healthy guy,right, joined the Navy as an AW

(07:02):
, which is an aviation warfaresystem operator.
That job back in the Cold Wardays used to hunt submarines
from aircraft, helicopters andold school P3s.
And they got some cool planesout now, the Poseidons that I
really wanted to be able to flyin.
But my time expired man andlife moves on.

(07:23):
Took that path and then, youknow, went through all the
training.
Man, it's about a two-yearpipeline of training.
You go through some prettydifficult things Air crew school
, rescue, swimmer school, someevasion school like a fake POW
camp that they call SEER school.
Okay, there's a lot ofdifferent tactics, schools and

(07:45):
platforms, learning theplatforms that you're going to
be on, that you'll be workingwith and working on learning all
of those.
So it's about a two yearpipeline.
At the time that I joined it wasabout a two year pipeline, but
I joined the Navy because Iwanted to be a pilot in the Air
Force, ok.
So I was like I was like man,what I want to do my whole life?

(08:06):
Man, I grew up loving jets,loving planes.
It's just been my thing as a,as a passion.
I just loved it.
I love the engineering of them,I thought they were super cool,
right.
And so when I reached the pointin my life where I was like,
look, we're going to go, I'mgoing to go in the military,

(08:27):
okay, I wasn't a militaryoriented person.
Growing up, mom and dad were inthe military, grandfather
served in Marine Corps.
I wasn't really like you wouldthink he was just slated for the
military, but at that point,maybe subconsciously, that was
happening, right.
But for me it was like dad'snot home as often, mom's not
home as often.
I don't want to do that to myfamily, man, I don't want to go
to the military and just neverbe home.
But then I had this passion infighter jets and so I went to

(08:51):
the recruiter's office in theAir Force and they were like
well, you know, in order to goto be an officer, in order to
fly jets, you got to be anofficer, which requires a
bachelor's degree.
And for me, school for me hadexpired.
I was at the point where I was.
You know, I'm 18, 19 years old,you know what I'm saying.
I'm in that age where I'm likeman, I'm done school, I've been

(09:12):
in school my whole life.
I want to get after it andstart experiencing what this
planet has to offer.
And that's kind of where I went,man, and joined the Navy.
Well, the Air Force was likelisten, we don't have a program
that you can join to fly planes,but the Navy has an enlisted
air crew program that allowspeople to fly in planes and in

(09:35):
helicopters and stuff.
You should go down the hall andcheck them out.
And I was like all right, so Igo down the hall, my Air Force
dude told me come over here andtalk to you about some you know.
And there was like so they showme this video at the recruiting
office, man, and at the time Ihad no clue, but now, looking
back on it, I laugh bro.
I laugh because they show methis video about different jobs,

(09:56):
right, like jobs that you cando in the Navy and all this
different stuff.
And they were trying to push,they're trying to get some more
air crewmen in the navy andraise those numbers up, so they
show me this video.
It's a coast guard video of acoast guard rescue swimmer right
some guy leaning outside of ahelicopter lowering the swimmer

(10:17):
down into the water and he waslike man, the guy in the
helicopter.
Man, that's going to be yourjob.
You're going to be like thewinch operator dude that just
kind of holds the cord for theguys that go in the water,
gotcha, but you get to fly everyday.
It's a great job, you'll have agreat time.
And I was like man, sign me up.
That sounds cool.
He goes and we give you $10,000.

Okay, so you're like money too, right?

Right Money talks.
Where do I sign, man?
Not knowing that I was joiningone of the most difficult US
military special operationsgroup in the world, the best
rescue swimmers on the planet, Igot to say because I'm Navy or
come from the Navy, the Navy.

(11:06):
So I didn't understand that.
I didn't really understand whatI was getting myself into.
I had no preparation, I didn'tknow I was.
I have to go and run foreverand swim forever and get.
I think it was like bootcamp.
That's all I was really worriedabout.
I was like after that.

But you know what I'm getting from this and I
and and I'm not going to jumpforward is you had a dream, you
had a passion and and you chasedit and you created opportunity.
That's kind of how I see, whichI love, so keep going so long
story short.

It was a pipeline.
I joined the Navy, got reallyexcited, went through the
training and it's important tounderstand that when you go
through this kind of physicaltraining, I was in a point in my
life where I didn't have awhole lot to rely on.
I didn't have a whole lot tofall back on.
At the time I was, you know, Iwas out of high school that

(11:53):
transition of you're out of highschool.
I was dabbling in some collegeclasses, didn't really find any
passion there and didn't reallyknow where I wanted to take my
life, you know.
But the Navy definitely helpedme figure that out.
Man and being part of acommunity like this is a
blessing all in itself.

Okay, okay, and so we fast forward.
You get out of the Navy in 08and 2012, my wife, my son and a
friend of ours.

We go back on the ship that I was on.
The USS George Washington wasmaking its way back to Norfolk
Virginia from Yokosuka, japan,and that's important because I
was on the home port change whenthe George Washington went from
Norfolk Virginia to YokosukaJapan.

(12:52):
Okay, so it was on its way home.
I had some friends still on theship and you know a lot of
people that I was on the shipwith kind of understand,
understood kind of what we wentthrough on that on that ship and
it was cool.

Now is your wife military.

My wife is a military veteran.
We met, okay, on the ship.
We call it the G, it's the Gdub to us.
Right, aka the love boat, akaCVN 73.
Right, so yes, met my wife onthe ship, um, man, and we've
been together ever since.
I met her in 2000.

(13:29):
Late 2005.
Ok, met her late 2005,.
Man, and we're still together20 years later.
Man Been married, 18.

Gotcha.

So you come back in 2012 and you find you come
back in 2012 and you find, yeah,so 2012 ship pulls back in, my
buddy reaches out and we're likeman, it would be great
experience to show my son, youknow, who was about six years
old at the time let's take himback on the ship, man, like
where mom and dad startedeverything you know.
Let's show you, kind of, wherewe, where this journey began.

(14:01):
Yes, and so we did that, man,we were walking the halls of the
ship and, mind you, the lasttime I was on that ship it was
on fire, so I broke down.
We were walking.
Something, just somethingsnatched my soul out my body,
man, when we were walkingthrough that ship and I remember
walking through the hangar bayand looking at the hatch that we

(14:23):
had to go down to initiate arescue.
It was crazy, man, it was justcrazy.
And after that experience, Iwent home, went back to our
friend's house and she wasalready.
She was military, she hadworked with my wife in the same
division on the same ship andshe was like I think you have
PTSD, man, and I'm like whatshe's like yo, you got PTSD bad,

(14:45):
like something.
Something happened to you onthat ship today and I was like I
feel it.
I do, I could see that and Ididn't understand.
I didn't understand what washappening to me.
I didn't know, you know, I wasjust like I don't know.
It's a situation, it kind ofhappened.
I didn't really talk much aboutit, I didn't tell a lot of
people about the situation.
It was just a thing that kindof happened.
Oh, fast forward to 2020.

(15:06):
I blow up like the michelin man, like the nutty professor, and
I gained like 40 you know 40pounds overnight and I go from
like 220 to like almost 300pounds, like all overnight.
We go, we go to the or to theurgent care and I'm like yo,
what's going on with me?
And they're like man, you gotsome you're feeling funny too.

I was feeling so yeah, I am awake.

Awake, I mean, just a regular morning.
This is out of nowhere.
I just wake up and I'm like Igot some flank pain, I got some
edema, I think, going on.
I'm not feeling too well, bloodpressure is not doing so, but I
got something going on in mykidneys.
Now that's important for me tostop you right there and let you

(15:51):
know that I've had some kidneystones since I was getting out
of the Navy.
I've had some kidney stones,but they've always been
attributed to oh, you'redrinking too much whey protein
or you know, it's too small toreally biopsy the stone and kind
of figure out exactly what itis you know.
So I just like I'm going tostop drinking this whey protein

(16:12):
and, you know, stop gettingkidney.
Kidney stone was always what Ithought, man, and in 2020, man
changed my life, man, and what Ithought was maybe possibly
another kidney stone turned outto be a terminal diagnosis and
it turned out to tell you knowthe long run.
It told me you got 12 months tolive with this thing, man.

(16:34):
That's about how long it's goingto be.
That's what was told to you Yep,wow, wow so all in all, the
first question you asked me wasabout my diagnosis and how it
was receiving that informationat that time.
So at that time it was just.
It was really hard for me toprocess all of that the who, the
what, the when, the why's, allthat stuff came later.

(16:57):
I didn't know any of that.
I just thought maybe I had akidney stone and we're going to
get there, we're going to takesome medicine, right, we're
going to make the veins a littlewider and I'll pee this thing
out or not.
But it wasn't a stone.

And so you received this information, your
wife received this information.
You guys are fighters, troopers, you know.
If you can't remember yourfirst thought and your process,
just take us through kind ofthat wake up period, right, the
period where, of course, you'refighting to survive.

(17:30):
Then is there some time betweenyou.
Know, I want to this, thesefirst questions, I want to you
know, talk about your community,your wife, your kids, the
people that you surroundedyourself with.
What did you do to push back,fight back?
I mean, it's one thing toaccept a critical diagnosis of
12 months, but that's been yearsago.

(17:53):
Daniel and man, I applaud youfor the fight.
So what was your process there?

So it was built and ingrained into my every
being that quitting is not anoption when you're going through
hard military training oryou're doing any kind of hard,
strenuous event on your body.
It builds resilience and itbuilds strength.
And if you can live your lifeby the motto of I will never

(18:22):
quit, then you have theconfidence to take on whatever
comes across in your path.
So, for me, kidney disease cameacross my path.
You know, first it was PTSDthat came across my path and
then it was kidney disease, oh,and then it was like man, how do
I deal with both of these?
And then it was the PTSD thatfollows from kidney disease

(18:44):
treatments and all themalpractice and all the things
that went wrong.
So biggest thing for me thatreally stood up is when I had to
look my family in the eye andwhen the doctors were telling me
hey, man, you're going to haveto make a phone call to your
family and let them know, likeyou're probably not going to
make it out of here, man, likethis is bad, you know.

(19:08):
So having that conversationright in your head in the
hospital, not knowing what'sgoing on, I couldn't even
pronounce membranous nephropathyright, let alone nephrotic
syndrome.
So I was like what is happeningto me?
But we looked at my wife, man,and we looked at each other and
we were just like, yeah, we canbeat this.

(19:29):
I don't care what it is, you'vebeen through it, we've been
through it.
You know we beat all the odds.
You know what I mean Likethrough our both of our lives
and how we've grown up and howwe've raised our son.
Is is beating odds and changingthe narrative, you know, and
letting people know that it's OKto say no when everybody else

(19:50):
say yeah, because you got yourown personal reasons of saying
no.
So when the doctor told me thatI had a terminal disease and I
wasn't getting out of thehospital, I'm not accepting that
.
I need a new doctor.

OK.

You see what I'm saying?
Like to me it was.
It was open to shut, ok, so mydisease is something that you're
not familiar with.
Peace, let me get somebody thatis.
And that was.
That was the start, that wasthe.
I'm not just going to lay downhere and just take this.
This is crazy.
I've been through way too much.

You know what I mean, so, and you, know I mean
so and you know what'sinteresting about all that is.
You know a lot of people wouldhave just laid down on that
diagnosis, but you guys foughtback.
And let's stay on family for amoment.
There's something special thatwent on between you and your
wife both military people, youknow love your life.

(20:43):
You're it, your queen, you're aking, you know.
You know, talk a little bitabout the part of community and
family that kept you going.

Man, it's the only thing that kept me going.
Right, I lean on the militaryheavily and what my training has
got me to, but that only lastsfor so long.
Right, that's not going to pickyou up out of the trenches, man
.
You need somebody by your sidethat can recognize when you're
in the trenches and can throwyou that lifeline to help you
get up out of the trenches.

(21:16):
Right, that's what I didn'tknow.
I needed that.
I already have.
I had it.
I found it.
I married her right, so she wasstrong and resilient.
I mean, the lady I married man,was launching fighter jets off
a flight deck of an aircraftcarrier, like things you see in
Top Gun.
Right, right, I met her.

(21:38):
Her face was covered in a jetexhaust fumes and black soot.
I knew she was ride or die forme.
I got you.
From the jump and you know, whenyou take those oaths in
marriage, like in sickness andin health, you know some people
take that stuff in vain and saythat stuff pretty easily, not
really realizing what you'rereally signing up for Right?

(22:00):
So in sickness and in health,there you go, you know my wife,
my family has been there for me.
Now, being from Baltimore, Ihave a spread out family.
After joining the military, wehad came back to Maryland for a
little while, came back to theDMV area for a little while,
built our resumes up in thatarea and then, ultimately, we

(22:21):
moved down to Florida about sixyears ago.
And then, ultimately, we moveddown to Florida about six years
ago 2018, 2019 timeframe.
We moved down in Florida.
It's something we love.
We're Navy people, we need tobe by the beach.
It's just something that is inour soul Warm weather baby, it's
Florida weather man.
So why wait till we super oldand retired, right Right, let's

(22:42):
just get down there and have funand live life the best way we
can.
So we did.
I'm so glad, in so manydifferent ways, that we made
that decision to come down here.

So you get this diagnosis, you fire your doctor,
and because he didn't have afight, well, you know, we could
say it for a number of things.
One, he wasn't familiar withthe disease.
He didn't have a let's save youattitude.
A disease, he didn't have alet's save you attitude.
What was the next thing thatwent through?
Because what I'm trying to dois build this.
You know how you get fromhearing that to this national
advocacy champion that you are.

So there's 300,000 nephrologists in the
United States.
Okay, 300,000.
How many do you thinkspecialize in rare kidney
disease?

That's a great question.
I'd say 10% maybe 300.

There's 300 professionals in the United
States that deal with rarekidney disease.
Let me tell you something 300,right we were.
I was at a Nefcare patientevent in New York City last
weekend and there was 300 peoplein that room.
So can you imagine that roomholding every rare disease

(23:51):
nephrologist?
No, in the United States.

No, I can't.

And all of them have to treat every single
patient that has a rare kidneydisease.

And there are 341 million people in this
country.
That is an insane number 300for 340.
I mean, I don't know thepercentage of people that have
rare kidney disease, but JesusOkay.

Nine.
One in nine, well, one in threehave CKD.
One in nine have a rare kidneydisease.
They don't even know it.
They don't even know it.
So that started my journey ineducation.
When my doctor came in and saidI don't know what to do.
We know that you're swelling up, we know that you're gaining

(24:36):
weight.
Mind you, they put me on an IVdrip the whole time in the
hospital.
So I'm just continuouslygaining more weight, right?
Nobody really knew orunderstood what was happening to
me.
So that started the journey ofdecline.
My health actually declined whenI went to the hospital, not
improved.
You would expect it to beimproved when you get assigned a

(24:58):
medical team, you get admitted,you got a nephrology care, all
these things that are supposedto be helping.
Yeah, that actually made myhealth worse.
And the reason it made myhealth worse was the lack of
knowledge in this space, thelack of knowledge in the kidney,
the rare kidney disease spacein the world of nephrology

(25:22):
education.
Right, when you go to school tobe a nephrologist, nephrotic
syndrome is like at the bottomcorner of the page.
You know what I mean.
So if you skip I know college,you skip school.
That day.
You didn't learn nephroticsyndrome.
You don't learn anything aboutit.

And so you find this out.
And how did you find yourspecialist?

It was a journey .
My treatment has been throughthe VA, so it's not as easy for
me to be able to just say, okay,hey, I'm going to fire this
doctor and I'm going to call myinsurance and go to another
doctor, right?
The VA has got a wholedifferent process of things, man
, and they don't like to steparound that process for nobody,

(26:02):
ok.
So I fought and I fought and Ifought to get out of the VA into
what they call community care.
I had to prove that my medicalteam currently could not handle
the care that I was currently in.
I had to prove it Okay, becausethey're not going to pay for you

(26:26):
to go see a doctor outside ofthe VA if the VA doctors are
completely doing their jobcorrectly, right?
Yes, yes More cost's morecost-effective to leave you
inside the system than to payfor somebody outside the system.
So a lot of this really startedtaking place after I had gotten
my biopsy.
I was in in 2020, I was in thehospital for a little over a

(26:47):
year, in and out at times andthose kinds of things, but
really trying to figure out whatwas going on, I didn't walk
into the hospital and go hey,you have membranous nephropathy.
No, nobody knows that.
Right, don't walk in thehospital.
You got kidney disease?
No, we walked in the hospital.
They thought I had a block, afully blocked kidney vein Right
that was being blocked by astone.
That's probably what theythought so immediately was X-ray

(27:09):
CAT scan what's inside hiskidney, right?
All those kind of things.
Oh, by the way, he might havecovid.
This might be covid relatedbecause, at the time everybody
had covid.
You remember you would sneezeand they'd be like you got covid
.
So if you just you got covid.
So for me to walk in there witha full-blown edema, pitting
edema, stage four edema, andjust walk in there like the

(27:32):
pillsbury dough boy you knowwhat I mean and be like I don't
know what's happening to me,they're like, well, we ain't
have, well, you might have COVID.
We got to put you in quarantine.
We are quarantined for a whileand see what happened.
We'll know where you got thisfrom.
So that's kind of how I gottreated.
Right, it was like this COVIDweird, like we don't know what.
We didn't know what COVID didto people in the first place

(27:52):
people in the first place,gotcha.
So that started the path oflet's figure out what's going on
with you.
Let's take a COVID test.
Remember they stuck that, thatthat tip all the way up in your
brain and you know, so I had togo through all of those
misdiagnoses that weren't youknow the testing to figure out
what it was.
Ultimately, I had gotten anephrology team who who I was

(28:14):
knowledgeable enough to say, Ithink we need a poke of the
kidney.
We got to take a piece of thiskidney and let's go look at a
biopsy done and kind of go andlet's see what's going on.
At this point they had foundthe protein in my urine, so I
was spilling 12,000 milligramsof protein.
Wow.

That's 12 grams, that's 12 grams of protein per
day in your pee.
That's a lot.
That's a lot.

So that's a lot.
If you spill 30 milligrams 30milligrams on a regular day your
nephrologist is going to sayhey, man, we need to do some
testing.
I was spilling 20 or 12,000.
So we did a biopsy.
Biopsy came back confirmedmembranous nephropathy.

(29:02):
At the time, in 2020, theeducation level of membranous
nephropathy wasn't nowhere nearwhere it is today.
They were making some progress,though.
They were making some headway.
There were some people tryingto make some noise about it in
some, you know, some headway.
There were some people tryingto make some noise about it, but
not a lot.
Okay, not a lot.
And what I really needed toknow is I had to take control of

(29:22):
my own knowledge of thisdisease Once I started realizing
that the medical teams aroundme aren't going to get it.

Now, daniel, how long did it take you to get
there?
Because you know, you know,that was that's one of my
questions is, you know, yourmindset shifted and allowed you
to start thinking less like apatient and start thinking like
a disruptor and an advocate.

It kind of fell itself all in all that, all that
kind of all in the same timeframe.
It kind of felt for me becauseI was in the hospital, right.
So I'm in the hospital, I gotthe gown butts out in the back
and I'm just trying to figureout.
All I have is a phone and acharger.
I don't even have my wife nextto me, you're right.
So we're trying to bounce ideasand we're Googling and I'm

(30:06):
using Dr Google man, you knowwhat I mean Like trying to
figure out what is nephroticsyndrome.
Nobody really mentionedanything to me about membranous
nephropathy until after mybiopsy had been read and they
told me that I had membranousnephropathy secondary, but they
didn't know which was means it'scaused by something, but they
had no clue it was caused by.

(30:27):
So they ran me through the wholegauntlet of the cancer and the
lupus and the diabetes and youknow they run you through the
gauntlet of everything trying tofigure out what that cause is.

Now were they accusing you of bad life choices
, like they've done other folkswith kidney disease?
Like you, eat too much fastfood, drug use, anything like
that.

Not specifically for me, because I was
experiencing symptoms thatpeople couldn't put all together
.
They don't understand why mybody was storing water,
especially after they gave me IVLasix.
When you get in Lasix IV, yourwater should just come off.
Instead, it stayed on and Ijust got bigger Jesus.

(31:08):
So they were like, and to thepoint where organs start to fail
.
I mean, you can't hold thatmuch fluid on your heart and
your lungs and your liver, right?
You just can't hold that.
Your body's not designed to doall that.
So I was in the process of theywere killing me, man.
Yes, they didn't even know it.
I didn't know it, but I felt it.
And that started the journey.

(31:29):
I got to figure out what theheck is happening to me, what is
going on with me if these guysdon't know?
Lord, yeah, nobody's gonna know, and I gotta figure this out.
So that's when the researchstarted.
That's when the you know mywife kept telling baby, you
gotta be your best, your ownbest advocate.
Man, I would fall asleep on thephone on facetime just so,

(31:54):
because I didn't know when thedoctor was coming in next.
And she was like I got to bethere for this because they were
pumping me full of medications.
Man, you're not in the samemindset.
I was in excruciating pain.
Ok, organs are failing.
I mean, things start to happento your body where you're just
not 100 percent here and with it.
Does that make sense?

(32:15):
It does.
And then she was able to bethat voice when I didn't have
one and sat there on the phonewhen the doctor walked in and be
like hey, hey, doc, what'sgoing on?
I need to know his numbers,what's going on with this?
What's his blood pressure,what's the status?
You know what?

(32:40):
Because the doctors kept leavinglike, oh, I got to go reach out
to somebody else and see if Ican figure out some answers, and
then it would come back in tocheck on me.
We're expecting answers, right,and they're just more questions
, right.
And when they come back in withjust more questions, I'm like
so when did you?

was it okay?
I love the story.
Did Nefcure come into thepicture yet?

Yeah, so I'm laying in the hospital bed and
I'm on Facebook it's a Thursdaynight and I'm just scrolling
Right and I felt like I'mscrolling for my life, Like this
is the last score.
This is the last scroll thatI'm going to do is how I felt,
man, when you get a terminaldiagnosis and they're telling
you, bro, you got less than ayear.
Usually you expire before that,Right.

(33:14):
And then you're all the thingsthat go in your head like man,
I'm not going to see my songraduate high school, I'm not
going to see him get married.
I'm not like all those thingsstart happening At all, all of
that.
So you're dealing with all themental anguish, right of this.
Now you're dealing with themental and physical abuse that
you're getting from the medicalteams that are trying to treat

(33:35):
you.
That's not working.
The only thing I could do wasempower myself and become an
empowered patient.
And how do I do that?
I don't know.
There's no roadmap.
So I get on the phone and I'mlike, all right, what agencies
handle nephrotic syndrome?
Because that's what I, that'sall.
That's what they told me at thetime.
You have nephrotic syndrome.
So I was like, okay, nephroticsyndrome, nephrotic syndrome.
And I'm just doing searches andI stumbled across a patient

(34:00):
support group for patients withnephrotic syndrome sponsored by
Nefcure International, which isa nonprofit organization
designed.
Their entire mission is tryingto find a cure for people and
patients that have rare proteinspilling kidney diseases, like
myself.
So I hopped in there.
Man, it's eight o'clock atnight Again.

(34:21):
I got the gown on right.
I got the little ties in theback.
I have no clue what I'm aboutto walk into.
You're a Zoom guy, right?
You used to hold a lot of Zooms.
So, I don't know what I'm aboutto walk into.
I'm going to click this link ateight o'clock and just see what
happens and see who's in here.
But I had hope, because if theyhave this Facebook group
created, people are going tojoin it.

(34:43):
That means there's other peoplein the world that have the
thing I have.
I got questions, my doctors gotquestions.
I was filling up notebooks withthe doctor's questions.
I had my notebook with myquestions.
I had my cell phone with mywife's questions.
We had all these questions.
So I'm like I'm a happiness andI'm about to unload, and that

(35:03):
was my introduction to Nefcareman.
It was.
I met some amazing people thatprovided me some support that I
will be forever thankful for.
I don't even know how to putinto words the amount of
gratitude that I have for thosepeople.

Yeah, I'm with you because, for those folks
that are listening to the soundof my voice, very powerful
organization, nefcure, and, asDaniel said, they are a
nonprofit in the fight forkidney care, and this is where I
met Daniel.
And so, daniel, my nextquestion is when you got
connected to Nefcure?
Is that when the questionstarted to get answered at an

(35:39):
accelerated pace?

Did it?
Did I mean, I had questionsthat drove more questions and
when I reached a roadblock thatpeople didn't have answers, I
had to go around them.

Gotcha.

And even at some point you only reach people
only have so much knowledge.
What Nefcure really helped meto do was try and find that
specialist.
Hey, you're not the only onewith this disease.
We have a network of doctorsthat we work with that are
specialists.

And I said.

But here's my trials and tribulations.
I can't just pick up the phoneand call your specialist and get
an appointment because I don'thave insurance.
All I have is VA health care.
And let me tell you what I wentthrough just trying to get out
of the VA health care system.
Right, and I still battle that.
So it was like, ok, how is thisgoing to work?
This is how it worked.
Is Miracles happen, man?

(36:30):
For a reason, I attended apatient summit put on by Nefcure
and when I was healthy enoughto be able to show up in person,
things just lined up the wayperfectly, man, they held it in
Orlando.
It's an hour from my house.
How random.
Right, I'm in Orlando, amedical facility.
I'm like, okay, that's random.
At that patient summit they hadsome specialists talk and give

(36:53):
some speeches and there was adoctor on there I'll give him a
shout out Dr Joshi.
Man, I love you.
He is a nephrologist, boardcertified nephrologist and
nutritionist and I was like, ok,so he was talking about diet
and things.
He's a vegetarian, a vegan.
Now, listen, one of the things Ihaven't shared with you is I
grew up in the vegetarian diethousehold.

(37:16):
I didn't necessarily alwayspartake when I was, you know,
age enough to go to school andeat a burger?
I did.
But the household we didn'thave meat in the house.
It just it was just how we grewup.
We just it wasn't.
It just wasn't something thatwe did.
So I was a little rebellious.
I wasn't a survivor in thathouse.
I wasn't.
Let me tell you somethingrebellious.
I wasn't a survivor in thathouse, I wasn't.

(37:36):
Listen, let me tell yousomething.
Anyway, look, hey, look, it'sgreat.
It is a healthy.
It's a healthy food, foodregimen.
If that's something that youcan do, I recommend it to people
all the time.
Dude, you got the strength.
I just haven't gotten there yet.

Right, I'm shifting in that direction.
Now I'm eating less meatbecause, you're absolutely right
, it is a very healthy but.

But but keep going, cause I want to get this
doctor and he gave a wonderfulspeech and I just started
interrupting his and I apologize, dr Joshi, for watching this.
I apologize, but I wasinterrupting his speech because
I had questions.
Every time he would say so I'mlike I'll raise my hand and they
would give me the microphone.
I'd be like, dr Joe, whathappens when this happens?
Or this has happened to me, andthey're telling me that

(38:17):
da-da-da-da-da.
And he was like oh my God, whyare they putting you through
this and how are they right?
I'm like how do they get thewater off?
And they're giving me thesemedications and this albumin and
there's terms I didn't know.
Anyway, he took me aside afterhis speech, man, and he was, you
know, he answered a lot of thequestions that I had and he's a

(38:38):
specialist in nephrotic syndrome.
He educates himself on it, hestays up with all the, all the
current things.
There's five clinical trialsthat are going on that he's
aware of.
And he tells me, dan, movingfrom NYU and I'm moving in
October to Orlando, florida, andI've accepted a position at the

(39:01):
Orlando VA hospital what God,I'm working, yeah, what, okay,
okay.
So I was like okay, thingshappen for a reason, man, they
do.
They just happen for a reasonman, so I took his contact
information down Right.

Right.

And he probably just left.
You know he left the conferenceand went about his business,
moved here.
Like a year later or so, likethat October, he moved in.
I texted him Cause I don'tforget, I'm not going to forget,
I wrote it down.
He might forget me, but Itexted him and I was, you know,
had a, had a great conversationwith him.

I'm not very serious that he forgot you, but
you know.

I doubt he.
Yeah, he's, you know, he, he.
I'm not a good person to forget, but anyway.

Well, you know, I'm curious how did you go about
finding out that the cause ofit was from toxic issues when
you serve, as in the military?

Gotcha, that's, that's all right.
So.
So I told you about I had somestruggles trying to get out of
the VA system and I had to getinto some community care.
And my first bout withcommunity care was with a local
here in the space coast ofFlorida, a local nephrology
group, and built a really goodrelationship with that doctor
who decided I'm going to takethis on, I've done some research
on nephrotic syndrome.
I'm not a specialist but I willdo as much as I can for you,

(40:19):
and he was knowledgeable in thatspace.
So he was like let's start youon some of the cyclosporine
cyclophosphamide, let's do someof these other treatment options
that were kind of off label.
Because when you get throughcommunity care, the VA basically
gives you an authorization fora certain amount of time for
whatever that doctor recommends.
So that doctor's got to sendyou to somewhere else, they

(40:41):
approve it.
They got to write you a script,they approve it, right.
So your approval is good forthat certain amount of time for
the VA, so whatever that doctorwants.
So I took advantage of that andhe was like let's go do full
workouts, let's go do what theVA couldn't or wouldn't, right.
So he was like, listen, I wentto nephrology school with a
pathologist and he's a reallygood friend of mine.

(41:01):
We actually roommate, you know,we were roomies in school and
do you mind if I have him, if Iget your slides from the VA, you
mind if I have this?
My friend you know friend ofmine look at your slides and
review them.
Sure, I don't care, put it onnational TV for all I care,
everybody review.
Let me know.

Right.

And so he did and he calls me.
It was like I forget the day,man, but I remember getting the
call and he called me.
Usually we talk over text.

Yes.

Which is awesome , because the doctor that could
give you a cell phone numberthat you can communicate over
text message is amazing.
By the way, if you're listeningand you're a doctor, get close
to your patients anyway.
So I had a text communicationwith the doc, right, and I'm
like hey, you know he calls me.
I'm like okay, he never calls,answer the phone, what's up.
He's like man, okay, listen,good news, got your pathology

(41:54):
readings back.
But my pathologist, my doctorfriend, he's got a question and
he wants to know were you ever afirefighter?
I'm like no.
He's like you don't work as afirefighter.
I'm like, nah, man, I work in,like, the collision industry.
Like you know, I'm not afirefighter.
And then I was like why do youask?
And he was like so, in yourslides, in your biopsy, there's

(42:17):
the presence of a chemical usedto fight fires.
It's called AFFF aqueous filmforming foam.
Are you familiar with that?
And a light bulb went off and Iwas like I know exactly what
this is from.
Mind you, I haven't talked to alot of people about this, I

(42:37):
haven't shared my story.
I hadn't, you know, been veryvocal about the Navy and the
operation I'm about to tell youabout.
Okay.
They didn't really understandwhat was going on and to
understand why I have AFFF in mykidney today, I got to tell you

(42:57):
the story that happened on theship.
So on May 22nd 2008, I was onboard the USS George Washington
that was leaving Valparaiso,chile, working in like a law

(43:19):
enforcement area so where wewere teaching advanced tactics
to the military, police officersand stuff on the ship.
So we were doing a lot of likeroom clearing tactics and all
that kind of stuff.
So I was in teach mode on boardthis ship and I was standing a
watch, because everybody in theNavy stands a watch.
So I was standing my watch.
I was on the forward bow of theaircraft carrier.
We had to see, you know, I gotmy M16A2, got my grenade
launcher, got my you know, myBeretta 9.

(43:40):
That's how old I am and I'mgoing to date myself.
I got a Beretta 9 on my dropleg, my Blackhawk holster.
You know, I thought I was thecoolest guy in the world, you
know, and my boots is all supershiny.
You boots is all super shiny.
You know, I took a lot of pride.
I had these chloroform jungleboots, man.
That was so hard to get andnobody could get.
Everybody was like oh, where'dyou get them?
Boots.
Anyway, a fire broke out on theship and we were doing a

(44:02):
refueling at sea.
So a ship comes alongside ouraircraft carrier and gives us
gas.
So that way a nuclear aircraftcarrier doesn't run off of gas,
but we use gas for list control,to balance the ship and to fuel
the aircraft on the ship.
We've got to be able to gas upall the fighter jets, right so,

(44:23):
and the helicopters.
So we were routine scheduled topull alongside and transfer
some fuel over.
But over the radio and on thesecurity net we could hear that
the ship was blowing black smoke.
Now when we're chugging alongat sea you can't really tell
that the ship had a lot of blacksmoke coming from it because of
the wind.
So it was blowing it behind us.

(44:44):
But sitting behind us, kind oflike diesel trucks, like sitting
in the driver's seat, you don'treally tell.
You can't really tell thatthere's a bunch of black smoke
coming out the back.
Right, you're sitting behindthat thing, right, smoke coming
out the back.
Right, you're sitting behindthat thing, right.
There was a fire on the ship andit took a long time for us to
find that fire.
We thought it was up on theflight deck so we responded to
there.
It wasn't there.
Long story short, there was anAC boiler down in the very, very

(45:06):
bottom of this reactor space inthe ship that had been removed
the last time.
We were in port.
So there's this big ventilationshaft that went from the very
bottom of the ship out.
Were in port, so there's thisbig ventilation shaft that went
from the very bottom of the shipout.
So what we were seeing with thesmoke was smoke coming out of
that vent.
But we, the smoke was thick, itwas, you know, you don't know
where it's coming from, right.
And then they stopped the ship.
So now the smoke has nowhere togo and it's just there right

(45:29):
now.
Now it's just bellowing in itsin its space.
So we're trying to.
So we get the firefighting crew,we we call away a fire.
There's people for this man,it's not even my job, they're
people for this.
So the firefighter crew iscoming there and they go and
they're looking in there andthey're like we don't see
nothing.
So we call for a Nifty, right?
A Nifty is a firefighting toolthat can allow you to.
It's a thermal imaging toolthat allows you to look through

(45:50):
smoke and that way you can seethrough some thick black smoke
and kind of see the source ofthe fire.
You can see the trash canburning or whatever it is right.
So we grab the nifty.
We don't see a source of thefire.
We don't see it, wow, onlysmoke.
We don't even see heat.
There's not even a lot of heatcoming from this thing yet.
So the ship calls away andactivates all of its procedures

(46:12):
for a fire on board.
What started happening at thatpoint?
Little fires.

Now, mind you, an aircraft carrier is made of
steel, but on a ship a fire is aserious, serious thing.

Listen.
So in the Navy, everybody is afirefighter before your,
whatever job, you are right.
Marine Corps, everybody's youknow a killer before they're an
aircraft mechanic.
In the Army, everybody learnshow to shoot before they are you
know what.
So in the Navy we'refirefighters.
We learn that in boot camp.
That's bred into you becauseshipboard fires are devastating

(46:46):
and a lot of people can loselives really fast.
So this fire is building, youknow, and we've had little small
fires on ships before and it'slike, yeah, it's a fire to go
out.
Right, you've had fire drillsat work.
You've had fire drills inschool.
You've had.
And you always assume thatthey're false Until it's not.

(47:07):
And this one wasn't.
And I was in it because I wasin the smoke and I was going to
try and direct traffic as a as alaw enforcement representative
on the ship.
Direct traffic as a lawenforcement representative on
the ship.
My job at that point is tomaintain good order and
discipline, maintain the calm,collective attitude of the
personnel on the ship.

Don't freak out and you were in that for a long
period of time.

So we were in that for a long period of time.
So what we did end up hearingis that there was four trapped
sailors in a JP-5, which is ajet fuel pump room located at
the very bottom of the aircraftcarrier, and they are in charge
of moving the fuel back andforth.
Right, they were getting readyto set up for the transfer and
accept the fuel coming in fromthe fuel ship right.

(47:48):
So they're down there in thatspace and they're working.
The fire is on the other sideof the wall of their space, so
think of a box.
The fire originated and again,we didn't find this out until
after action reports and so thefire originated in the space
adjacent to them.
Jet fuel is flammable, hello.

(48:09):
So some saving graces.
The reason I'm here today andwe didn't expire on that ship is
because we offloaded all of themissiles and bombs to another
ship because we were doing ahome port change.
That make sense.
So we transfer ammunition.
They gave us a whole bunch oflike brand new mattresses.

(48:31):
So we were getting all thisupgraded stuff.
Right, people were gettingupgraded furniture.
You know they're trying to dosome upgrades on the ships.
All of the most of like thebomb bays that hold all the
missiles that could blow up in afire were replaced with
mattresses.
So is that a good thing or abad thing?
Well, the mattresses, when theyget hot, they get hot and they
fuel fire, but they don'texplode.

(48:52):
But a ship is like a radiator,right, it's all steel.
So wherever that fire is, it'sgoing to radiate the heat
outwards.

I see your point Okay.

Okay, we watched in 9-11 what happens to heat as
it radiates with extremetemperatures.

Steel starts to expand.
Get more pliable, yeah.

Okay.
So at some point steel turns toliquid, right.
So it's imperative we find thisfire.
Yes, there goes a call out forthese four trap guys that are
down in the bottom of the shipand we organize a team to help
get these guys out of there.
You know, we get down to thecommand center and they're

(49:35):
basically, like you know, oversecurity dispatch.
They dispatch us down.
We get down there, we're in thecommand center getting briefed
a little bit about what's goingon in the situation, and we've
had some failed attempts withthe ship's firefighters, who
this is their job, this is whatthey train to do, this is what
they do every day.
They're very good at it.

(50:01):
These are the best firefightersI've ever met in my life and
they're trained to go down intothese spaces and run towards the
flames and deal with whatever'sthere.
Well, when they can't even getto the space at the bottom of
the ship because it's too hot,because the fire hoses that
they're taking down to thatspace are rupturing, because the
water that they're spraying totry and keep things cool is
turning to steam, the fire is sohot that it's melting the boots

(50:21):
of the firefighters that aredown there, so they have to
retreat, all while there's fourlives that need to be saved
further down, farther down,farther down.
And so we took charge.
That's what I do.
We take charge.
There's four guys.
Let's come up with a plan toget those four guys out of there
.
There's no guns and bulletsdown there, right, there's

(50:43):
nobody shooting at me.
Let's get down there and let'sgo handle it.
Man, search and rescue is whatI do.
This is what we do.

Let's go rescue these guys, man this is about
okay, so you okay so.

I put together, we put together a team, we go
down, we formulate a plan.
Now, mind you, let me set thestage for you.
I'm in all woodland camis Now.
They got all digital stuff.
But now I was in the old schoolwoodland camis.
I got a.
I got a military police dutybelt on with handcuffs, a

(51:13):
firearm, a rifle, you know whatI mean.
Like I got magazines, I gotstuff on my belt.
I got an ASP baton, acollapsible ASP.
You know, I got all thesedifferent things on my duty belt
.
So as we make our way to wherethe entrance point is, where the
other firefighting teams arestaged, I drop off the weapons,

(51:33):
right.
I'm like, hey, let's get theweapons.
I can't take these things intoa hot space.
Right, right, right, andformulating a plan is what they
wanted us to do.
But there's a mindset in thespecial operations community and
the mindset is that never giveup that never quit attitude.
There's something different inyour mind that is taught to you

(51:54):
when you are in that world ofspecial operations that isn't
taught necessarily to theregular military.
Okay, so we take thisopportunity to go to formulate a
team.
We grabbed some of the silver,what we call potato suits.
These are firefighting suitsmeant for aircraft fires.
You've probably seen them on TVNational Geographic, them guys

(52:17):
in those silver suits sittingnext to like lava in the
background and meant totake extreme heat right.
Meant to take extreme heat.
Looks like foil.
The problem with those suits isthat when they get wet you have
to keep them wet because youwill bake like a baked potato in
hot environments.
From the inside out, you willcook from the inside like a

(52:39):
baked potato.
We wrap our potatoes in foiland put them in oil.
That same thing is about tohappen to you.
So you got to go down there andyou can't bring water and the
water don't work anyway becauseit's just been rupturing the
hoses.
It's too hot.
Now, I'm not trained for hotenvironments.
Let me correct myself.
I was trained for hotenvironments in boot camp, in

(53:00):
simulations with propane andthey can turn the fire off Right
.

Right, but this is no, you're not turning this
fire off.

Yeah, turn this thing off.
And this is no, you're notturning this fire off.
Yeah, turn this thing off.
And this is all.
This black smoke is coming upto Mind you all this chaos is
happening throughout the ship.
Heat is still radiating on theship.
There are spontaneous firespopping up all over the ship.
The entire ship turns into onelarge firefighting effort.
They sound away the generalquarters.
Every single person on thatship that is in the United

(53:33):
States Navy is now a firefighterand your only mission is to
save this ship.
So that's what happened, and inmy little part of it was
pulling four guys out from thebottom.
I'm sure there's a millionother stories of what happened
that day on that ship.
Did they survive the fourpeople?
Yeah, so let me tell you aboutthat.
We get down to the ship, we getdown to the hatch.

(53:55):
We actually make it a couple ofstories down further, farther
than the firefighting crews wereable to with their regular
firefighting suit.
So I got the silver foil suit.
I got a regular firefightersuit underneath of that and I
got some camis, okay.
So I got some camis.
Okay.
So I got some heat resistant.
I got a little head thing, youknow, whatever.
So we go down there and I get tothe point of no return, man,

(54:17):
and you can see and feel.
Let me tell you something Ihave a hood on, I have a
firefighting mask, I'm breathingcold oxygen.
Okay, we get down to the pointto this landing, um, and to get
down there it's like a littlehole.
It's probably a hole about Idon't know five feet in diameter
, if that, and you crawl downand it's a ladder.

(54:37):
It's hand over hand, more orless all the way down.
So once you get down, there's acouple landings and then you got
some steep ladder wells andthen you got some more holes.
You go down.
Okay, that's how ships arebuilt, okay, so it's just wide
enough to get a firefighter withan oxygen tank on his back
through the hole.
That's all that can fit throughthat hole.
That's what they're designedfor.

(54:58):
So we go down there.
I got everything down there,man.
I get to this landing and Ijust look around and I am in
hell.
I am in it.
I am like the walls are red,the steel floor is warped,
everything's glowing around me.
They did not survive, not theheat mirage the heat mirage that

(55:19):
you could see.
You can see the mirage in theair as I was standing there.
But you can't stand there andget enthusiastic about all that
too long Right, because I can'tget rubbernecked about it,
because it's hot, my boots aremelting you gotta get in and get
out I'm not, I ain't dead yet,let's go.
So we keep getting down there.
Now we get that the hatch.

(55:39):
It's a flat hatch that opensvertically.
That's got a like a wheel onthe top.
You've probably seen in somemovies right, this hatch, now
this hatch, you have to go downthe ladder.
Well, so, so open the hatch.
Now, in general quarters, when aship goes into general quarters
, they lock all the doors on theship.
Okay, they do that for waterintrusion, fire retardant, all

(56:00):
that kind of stuff.
So they lock everything.
It's called dog zebra.
They shut everything down andthey lock all the doors on the
ship.
In order to open one of thosedoors on the ship, you have to
contact somebody in damagecontrol so they understand and
know in the ship's layout thatthat door is possibly open.
Anyway, we get down there.
We've been given permission toopen the door.
But the wheel that you turn,you just turn it like a half a

(56:23):
turn.
It's glowing red.
So we look at each other manwho's going to grab it.
The guys we got to rescue thatare screaming on the phones that
they're dying are on the otherside of this door.
We are here.
There's no going back.

And you know, I would assume they don't have the
equipment.
On that, you do the people thatI'm with.
No, no, no.

No, I'm saying, the people you're trying to
rescue don't?
The people I'm trying to rescueare in t-shirt, cami, pants,
boots.
Right, there's the people I'mtrying to rescue.
That's what they're.
They're in their regularworkspace.
They're just transferring fuel.
So we look at each other.
I realized, all right, I have anasp baton on my belt underneath
all this crap.
I go, reach all up in, I grabthis thing, I whip it out, I
stick it in the hole in the inthe wheel.

(57:14):
It like welded itself to thewheel.
Man, anybody that's on theg-dub, go down there and check
and see if that my ass was stillstuck to the handle.
I'd like to have it open.
The handle top pops over.
Okay, the guys are in the bilge.
Now the ship's bilge is thevery bottom of the ship.
That's where all the grease andthe dips spit.
You know, the guy couldn't makeit to the bathroom in the

(57:37):
middle of the night, decidedjust to pee on the wall and let
it run down into the bilge ofthe ship.
These guys are in the bilgetrying to stay cool because
their space, the fire, is not inthis space, the heat is, but
the heat, wow, wow.
And they're screaming.
They got a sound powered phoneright.

(57:58):
So these phones, you know youscream into them and that's
where everybody can hear you.
So they got this sound powerphone, man.
And so as soon as we pop thathatch, bro, these guys can't run
it up out of there.
Bro, I don't care.
Hands, bare hands, bare feet,fast as all, get out.
Man.
Now we're just lifting people,here you go, take them, take
them, get them out, take them,get them out.
It's too hot.
One of the guys grabs my hoodand the hood firefighting hood

(58:21):
falls off my face and it fallsabout 17 feet.
Now, mind you, I'm peeking myhead down into what is in that
space the ceiling.
Okay, so I'm peeking my headdown from the ceiling and these
guys are coming up the ladder.
Well, and we're helping themout and I'm just handing guys
off.
There's only four of these guysin there.
One of them pulls my mask offmy face, it falls down the steps

(58:44):
and lands at the bottom of thelanding and I inhaled, I took a
huge breath in of that hot airand that was the first time that
I got to experience what thoseguys were breathing and I was
like, holy, how are these guysstill alive, bro?
This is so.
This is crazy to me right now.
Got the last guy past me In thefirefighting space that we were

(59:04):
in is a JP5 fuel pump room andthat is designed if that space
were to catch fire.
They have these big, huge foamcannons located on the ceiling
and they blanket the entirespace with foam.
Looks like a foam party, right,and same thing they would do on
an aircraft on real hot jetfuel.
So they they douse the foam.
They got these big they'reeight foot round nozzles and

(59:27):
they just dump out foam all overthe entire space.
Well, knowing the ship andknowing what happens after the
triple F goes off, the Halongoes off and Halon removes the
oxygen from the space.
Oh, my mask just fell down, atriple F just went off.
I took a big breath of it.
I'm covered in foam, the guysare above me, I'm last out, I

(59:54):
rolled out and I'm like they'reabout to suck the oxygen right
out of this room.
And it was the pressuredifference from opening that
right, like opening a pressurecooker, like you know it.
Just all that pressure poppedout and that's what set that off
.
So I'm covered in the AFFF.
The guys get out.
All of them live, nosignificant injuries, only some
small burns.

(01:00:15):
Way to go.
Great story.
It was a successful operation,man, but it's something that
we're not trained for.
I'm not trained to go downthere and rescue guys in those
kind of situations.
I'm trained to go in the waterand grab somebody or something,
not a fire.

Keith D. Terry (01:00:29):
Your doctor asked you this.
You remember that you had thisepisode.
Now, that's not omission fromthe VA at all.
When did you know?
So so, very quickly, becauseI'm glad you can go over.
You still good on time.
I got plenty of time.

Daniel Holmes (01:00:45):
I got time all day long.

So so.
So now you, you know you have aclinician, you have a medical
team that's starting to putthings together.

My medical team is me and my wife.

Not the.

I mean the nephrologist and the pathologist
that found the 8FFF.
But the fight to get themlinked can't be done by the
medical team Gotcha.

So what did you do?
Because this is the changeagency.

This is the change agent right.

I want to.
I want people to understandwhat you had to do.

So I grabbed the operation that, the after
action report published by theNavy.
I grabbed that.
I grabbed a whole bunch ofother information.
I submitted a claim fordisability to see if I can get
this, because it's obviouslycaused.
I mean, how can you deny this?
Right, you got a triple F isright here.

(01:01:39):
Here's the slide says it's inthere.
Here's the operation that sayshe was a part of this operation.
These two together equalsapproval, is what I'm thinking.
No, man, and it didn't.
And they didn't understand whatwas going on.
They didn't understand.
We're just in this no mode.
The whole VA system was in nomode.
No, new medications were not aproven disability.

(01:02:02):
We don't.
We don't even know what youhave.
We don't, right.
So all this different stuff washappening at the same time as
I'm fighting in a bunch ofdifferent areas.
So I'm fighting for differentmedications.
I'm fighting for the propertreatment, right, I'm fighting
to go to the Mayo Clinic becausethe Space Coast doctor that I
was using we had exceeded wherehis threshold was at and I

(01:02:22):
appreciate him because he wasable to give me and tell me hey,
man, I don't know anything elsemore of this, you have to go to
an even more specialist.
So he got me into the MayoClinic.
But the VA didn't want to payfor that because you can't go
from community care referral toa referral.
You got to start all over againin a VA system.
So once I was done with him andhe referred me to the Mayo

(01:02:45):
Clinic, I take that paperworkand give it to the VA and
they're like no, we're notpaying for all that.
I'm like what?
So I got to go through thewhole thing, back through
nephrology.
Nephrology's got to identifythe fact that they can't treat
me, and now we get a new clientand the new client is Mayo
Clinic.

Now, daniel.
In the meantime, are you goingthrough dialysis.
Are you?
What are you?

doing.
My kidney function was 27%.
I wasn't a dialysis.
I didn't qualify for dialysisat the time.
So you know and there was hopeI had read that like one in
three go into spontaneousremission with no medication
needed.
Well, that wasn't me.
There was a lot of complicationsbecause of the different
medications that we were tryingto use.
Right, there's nothing on labelthat's meant for membranous

(01:03:28):
nephropathy or this kidneydisease.
There was nothing made yet.
So they kept denying themedications that we wanted to
try.
We wanted to try this and wewanted to try that and they were
like nah, man, we're not goingto try that, we're not going to
spend Listen, all these.
I had ended up getting.

(01:03:49):
Mayo Clinic helped me getapproval for my rituximab
infusions and they were denyingthat because the military or the
VA didn't really recognizethese chemical toxic exposures
as debilitating or disabling.
So that was the fight.
Once I realized that, I waslike they're never going to hear
me because they don'tunderstand that toxic chemical

(01:04:10):
exposure can cause these things.
There's not a lot of researchdone that they're going to rely
on that shows that these thingsare caused and these toxic
chemical exposures are caused.
So at the time theadministration that was in the
White House had a White Housecomplaint line for veterans.
Okay, so they published it.
I called hey, white House,here's my issues.

(01:04:32):
They investigated it.
They took all my case.
They helped me fight.
The white house helped me fight.
So then when I show up atcongress and I start talking and
I go to dc and I have theseconversations with these people
and the fact that they've takenaway the veterans white house
complaint line, I let them knowthat I saved my life, man.
Wow, the fact that there was theadministration was pushing the

(01:04:56):
pact act.
The pact act was is an officialact that was being introduced
in the into legislation thatwould recognize toxic chemical
exposures and these diseasesthat come from them, whether
they're burn pits or all theseother things that you can be
exposed to.
And once that kind of gotapproved and passed, my fight

(01:05:23):
became a little easier.
It became a little easier toget things approved.
I still had a journey withoff-label medications.
That's just going to be ituntil they create a cure, create
actual treatment program.
I didn't have a treatmentprogram.
There wasn't a treatmentprogram established for
memnour's nephropathy, really,except for high-dose steroids.
But I had to develop one formyself because again, I, had 12

(01:05:46):
months to live.
What?
Am I going to do for the next12 months.
I'm going to figure out how tolive past that.

I can smile on that, but you know to hear that
is cringe worthy.
So from the first time youheard that you had this illness
to the aha moments standing inCongress, how many months was
that?

Years, Months Still going on, man, I mean my
first time I did a virtualduring COVID.
I did a virtual.
A Nefcare put on a Hill Dayevent and I attended that
virtually from the hospital so Icould sit with constituents and
I could sit with these senatorsand I can, like we are today,

(01:06:27):
from the hospital and tell themwhat I'm going through and let
them see what I'm going through.
And that really got my once Istarted sharing that story and
that aspect of it, it reallystarted getting some traction
and things started gettingapproved and policy started
changing and that kind of stuff.
So it was like, hey, that'seffective, I need to keep doing
that.
If that's working, I need tokeep doing that.

(01:06:48):
So we just kept going back andI go back every year and we have
a Hill Day every year and we gothere and we talk to, you know,
the representatives, we talk tothe senators, these people who
make the laws.
Man, we got to change the waythat these things are done.

So now I mean you essentially and I'm going to
say it my way led a one mancampaign for change.
No, no money, no organization,except for you and your wife.
You know Nefcure helped.
You know what, what?
What you know?
Where are you now with thecreation of your advocacy?

(01:07:21):
I love the story.
You've gone from the aha momentto fight.
Now you are a nationallyrecognized kidney advocacy
person.

So that sounds crazy, just hearing that, that
sounds crazy Just hearing thatyou know, but it's the truth.

So you know.
Help me to understand your life.
Now you got a full time job.
What are you doing?
What?
How does how does life look forDaniel Holmes?

So life right now is amazing.
We're living in Florida with mywife and my son.
My son's getting ready tograduate high school.
I'm so blessed to be able tosee him graduate.
That was one of the things thatjust was in my head.
Like that I had so many doubtsabout, right, right, but we're
starting the Enlisted KidneyFoundation, and the Enlisted
Kidney Foundation is going to bea nonprofit organization that's

(01:08:09):
going to help veterans likemyself in a bunch of different
ways, so not only veterans, butregular kidney patients.
We want to get kidney diseaseawareness out there in the
affluent communities.
You know, in the black andbrown communities, we're
disproportionately affected bykidney disease.

I mean it's crazy.

So the Enlisted Kidney Foundation is going to
help put on some events that aregoing to raise some awareness
about that.
I want to help people get toNefcure events.
I would love for the EnlistedKidney Foundation to sponsor
some veterans to be able to getout to some of these events and
partake and get some moreeducation.
I would love the EnlistedKidney Foundation to be able to

(01:08:54):
partner with other organizationsthat are about spreading the
wealth or not the wealth, butthe health and equity and
spreading the word about kidneydisease and how.
You know catching it earlymatters.
You know catching it earlyabsolutely matters.
My situation is a littledifferent than most with kidney

(01:09:15):
disease.
Usually with kidney disease itpops out of nowhere and by the
time they know it and they go tothe doctors they're in stage
four, stage five kidney failure.
You know that's most people,but we can grab them at 18 to 25
years old.

Which typically means dialysis and all that kind
of stuff.

It means a straight road to dialysis.
You know, and there's no,there's not coming, they're not
coming back from that asdialysis and transplant.
I want to fix the kidney.

And that's, and you don't, you're not dialysis
now.
No, sir.

Okay, great function.
My kidney function is 87, 87%.

Yeah.

It went from up from 23.
27 Eighty seven percent.
Yeah, it went from up fromtwenty three Twenty seven to
eighty seven percent.
I walk around with almostperfect kidney function.
If I go to the doctor today andI tell him.

I have kidney disease.

They look at me like, ok, but this is a long
battle, because my kidneydisease is in a partial
remission right now.
Could, could the issue comeback, absolutely, absolutely.
And I'm in.
I'm in a spot in betweentreatments.
So I've done four rounds ofrituximab, which is a blood
infusion.
I have some ongoing treatmentstuff that I do, a lot of
medications that I take.

(01:10:18):
Blood pressure managementcontrol is huge for me.
Those are more or less thecause of both of my strokes.
I had eight pulmonary embolisms, so I'm on anticoagulation for
probably the rest of my life.

And people don't realize that one embolism is
enough to kill a person.

Absolutely.
I drove to the hospital with apulmonary embolism in my lung
and they were like why did youdrive here?
I was like I don't know, Icouldn't really breathe, it was
hard.
I had chest pain, it was hard tobreathe and they're like you
drove to Orlando from where youlive, and I was like, yeah and
Like, sir, you could havestroked out in the car.
That blood clot could havetraveled to your brain while you
were driving.

(01:10:53):
Don't do that, no more.
And I was like I don't evenknow.
I didn't know how serious itwas.
I didn't know that when youspill that much protein in your
urine, you lose your naturalanticoagulation, so you have to
supplement it.
So, anyway, we are starting theEnlisted Kidney Foundation
nonprofit organization.
It's not off and running yet,but that's our hopes.

(01:11:15):
It's our hopes and dreams.
So we're going to start thereand we're going to turn this
thing into whatever we can.
Man.
We're going to try and makethis as big of a foundation as
we possibly can.
I want to teach people how toadvocate for themselves.
I want to teach people how todo their two-minute story.

(01:11:36):
I want to teach people how toget their elevator speech
together.
I want to teach people how toadvocate effectively, because
there's a difference betweentalking and talking to somebody
that's listening.

So now that's where I wanted to go, because
you know I'm going to thank youfor the time, but we're going to
run out in a little bit.
But my question to you is thisbut we're going to run out in a
little bit, but my question toyou is this you know you have
spoken to Congress and I and not, and so talk to us a little bit
about the difference between.
I know what it is about, likegiving a speech, but I've never

(01:12:03):
gone in front of people who canmake policy changes and
advocates and advocated for apolicy change or awareness.
Walk us through that, which iswhat you mean.
I mean, you did it.
You didn't have, unless someonetaught you how to do it, but
this was on the job training, Iwould assume, but so what is on
the job, training, spitballingat the hip, and so what have?

(01:12:25):
you learned speaking in front ofCongress and the NIH and FDA.
What would you say to people?

I have learned that kidney disease does not
care about your job title.
I have learned that kidneydisease doesn't care how much
money you have in your bankaccount.
So for me to stand up in frontof Congress, those are people
that could have kidney diseaseas well and those are people
that probably have relativesthat could have kidney disease.
Most people I talk to knowsomebody with kidney disease.

(01:12:53):
They just don't know nothingabout it.
So let me come here and educateCongress.
Let me educate the people whomake the decisions for us, the
people who are putting the redtape right, the people who are
saying no, we're not going toapprove that medication.
Why?
Because it's off-label and itdoesn't't have membranous
nephropathy on it.
I need to find somebody thatcan sit in that seat that makes

(01:13:16):
those decisions, that can removethat red tape.
Gotcha, you know the ability ofa veteran to be able to go out
and get life-saving healthcarewithout having to turn his ER
room into a biohazard lab.
That's how I had to do it.

And can you tell when you know when they weren't
listening, because you justsaid you want to tell people?
There's a difference betweentalking to people and talking
when they're not listening orget them to listen.
It's the reaction.

What do you mean by that?
It's the reaction.
It's the reaction of theaudience that you're talking to.
So talking effectively meansyou got to be in the audience
that you're talking to.
So talking effectively meansyou got to be in the right
places.
You got to be screaming fromthe mountaintops in the right
places.
You know what I mean If I'mtalking kidney disease and I'm
talking and I want 18 to 25 yearolds right, Most of them not on

(01:14:05):
Facebook.
I got to be where they are.
I got to meet them where theyare.
I got to go to the basketballcourts and the football teams
and I got to be where they are.
I got to meet them where theyare.
I got to go to the basketballcourts and the football teams
and I got to go to these sportsevents and I got to go and talk
kidney disease awareness.
I got to talk to some of thesepeople Listen, I coached high
school football for 15 yearsRight, and the physicals that
they do for these sports?

(01:14:25):
They don't even test for kidneydisease.
They don't even pee in a cup.
How do you know these peoplearen't spilling proteins?
Test for kidney disease.
They don't even pee in a cup.
How do you know these peoplearen't spilling proteins.
So I want to be able to takethis foundation and go into
those spaces where those peopleare and I want to talk kidney
disease where they are.

Let's talk habits.
You're a healthy guy.
What daily practice do you haveto stay healthy with your life?
How do you keep things movingforward?

We say moving forward man, I got so many back
issues.
Right now I'm dealing with it.
Moving feels impossible.
Okay, what's your daily, dailystretch?
Hydrate, eat a balanced meal.
Stay away from the things thatyou know are going to hurt you
right?
Okay, I love red meat, but thekidneys hate it, so I got.

(01:15:11):
You know, my wife tries to get acamp steak for the fifth time
tonight, you know, I mean, youknow being conscientious about
what I'm putting in my body,more so than I was before,
identifying where the sodium is.
You know, looking for sodium.
I like pickles, dude.
You can't drink pickle juiceand eat pickles, bro, and you

(01:15:32):
got kidney disease because it'sgot so much sodium.
But yet pickles will get rid ofsome of the cramps that you may
get when you're on some ofthese medications.
But anyway, yeah, man, that'sit's kind of.
That's kind of that exercise.
I swim really often, okay, um,I'm in the gym swimming.
I don't lift weights because mybody doesn't heal the same way
that it used to.

(01:15:52):
So when you are on medicationsthat suppress your immune system
the immune I have basically noimmune system.
So my immune system.
When I rip and tear muscle, ittakes a year.
What would take you a week torecover.
Take me a year.
OK so I don't go in there andget on the bench press no more
muscles, I'm just going to stayripped for me.
So I don't go in there and geton the bench press no more
Muscles, this is going to stayripped for me.

(01:16:13):
So me it's like cardio right.
So like can I get in, can Iswim?
But it's low impact stuff,because my knees and my back and
jumping out of helicoptersain't fun when you hit the water
, you know what I mean.
Especially like 90 feet, thatsucks, but these kind of things
happen, man no-transcript, turnit over to you for a second.

My, my last question is well, first let the
preambles.
This podcast was set up becauseI wanted to, like you, make a
difference to.
You know folks who are lookingto be inspired, to learn, to
know that they can kind ofcreate their next big thing, and
you've done that.
And so my question to you is tothose folks out there, whether

(01:17:23):
they have a business, whetherthey are looking to start a
business, what words ofencouragement would you give
them?
And the reason I say it in thelast 90 days this is not a
political statement, but in thelast 80 days, a lot of things
have changed.
A lot of organizations areshifting tariffs, high prices,

(01:17:47):
things are just shifting allover the place.
You know, here the corollary issomeone finding out they don't
have a job.
You found out your life wassupposed to change in 12 months.
You're going to lose it.
You know, what advice would yougive to my listeners about
Daniel's plight and how you seethe world going forward?

It's hard to be a kidney patient right now, man,
in 2025.
I will tell you that it's hard.
It's hard.
The government's not making itmuch easier and our
administration's not making itmuch easier on our government
employees.
So those things are hard.
So, moving forward, it's justday by day.
At this point, man, it's justyou take the punches as they
come and prepare yourself forthat.

(01:18:28):
The way that you do that isthrough knowledge, education,
educating yourself about what'sgoing on, whether it's, you know
, regular kidney disease you gotkidney disease from having
diabetes or whatever.
Find community, whether that'syour church, whether that's your
fraternity right, whetherthat's your family, whether
that's a nonprofit organizationlike Nepcure, you know, or the

(01:18:49):
Enlisted Kidney Foundation.
You find somebody that you canlatch on to, man that's willing
to support you in your efforts,and you surround your world
around that person or that thingor whatever that is, and
surround your world around that.
You know, like the militarytaught us to be mentally strong.
It taught me to be mentallystrong and mentally tough.
And being part of such aamazing special operations

(01:19:13):
community in the Navy, youreally learn how to be something
bigger than yourself, you know,and to live for something
bigger than you, you know, and Ithink that we have a hard time
looking at that in our country,because everybody wants
something for themselves.

(01:19:34):
They only want it for me, andme, me, me, me, me.
You know, and it's like Iremember that feeling, like I
just want to live, I just want atransplant.
The patients are saying, or Ijust want this medication and I,
I, I, but it's a we.
My wife wants me alive, my sonwants me alive, my parents wants
me alive.
My son wants me alive, myparents want me alive, my

(01:19:55):
friends want me alive, mysupport groups want me alive.
The world needs me alive so wecan go out here and change it.
They used to, you know, a deathsentence.
You used to get a deathsentence when you were diagnosed
with diabetes.

Yes.

Now you can fix diabetes and CVS.
Yeah, you know, that's whereI'm trying to take kidney
disease, man.

Well you know it , it, it is still true, kind of
true.
When you, once you go ondialysis, there's fine, it seems
to be a finite period of timeand, daniel, I'm Thank you for
having me man, I definitelyappreciate it.
I just wanted to give you afinal word or two and I thank
you for that and I just want tosit here and say well first.

I don't know if you have any final comments
because I'm going to close itout.
My last comment I'd have is ourmotto that we live by so others
may live, and the EnlistedKidney Foundation you never have
a fight.

Daniel the Enlisted Kidney Homes that is
what he goes by.
I'm delighted that, daniel, youjoined us.
God bless you.
Brother, let's stay in touchand if there's anything that I
can do to assist you, you got mynumber and I'm just happy that
you're doing well, because yourson needs you and your wife

(01:21:11):
needs you, and so do we.
Thanks for listening to theNext Big Thing.
I'm your host, keith D Terry.
If you've enjoyed this episodeand you'd like to support this
podcast, please share it withothers, post about it on social
media or leave a rating and areview.
To catch all the latest from me, you can follow me on my

(01:21:33):
YouTube channel at Keith D Terry.
If you want to recommend aguest, please email me at info
at terryperformancegroupcom.
This has been produced by yourhost and Jade Productions.

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.css-14f5ked{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:2;overflow:hidden;}From Navy Vet to National Advocate: Kidney Disease A Fight For Your Life

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Stuff You Should Know

Intentionally Disturbing

All Episodes

From Navy Vet to National Advocate: Kidney Disease A Fight For Your Life

Dateline NBC