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We want to welcome to Veterans Radio a Marine,
Sean Libby who's got a Story to tell I don't
know how to phrase the story. It's not interesting.
It's It's an important story to tell that maybe
our veteran radio listeners can help out on and
if not his particulars situation maybe the larger
issue of organ transplants Sean welcome to veterans
radio Thank you. Thank you. I really appreciate
being here. And I really, really appreciate you
reaching out and scheduling this for me to talk
about this. Well, you know, your story is somewhat
typical, right? Get out of high school, go into
the Marines, end up in Afghanistan. You were
a mechanic, diesel mechanic. You did all the
stuff that you have to do to support the front.
forward of war fighters and everybody who's been
in Afghanistan knows and certainly I hope mostly
veteran radio listeners know about burn pits
which were very common over there you know there
was nowhere these were huge bases without any
sort of land fill disposal and you just burn
stuff right yeah there's no waste management
in Afghanistan so you just you just burn everything
and you burn it by and that's plastics, cardboard,
wood, computers with metals in them, biologicals,
everything. We won't get to a graphic. But again,
anybody who's been there or anybody who's read
anything recently, you know, kind of understands
what went on during those 20 years. And even
the stuff that you'd use to start the fires.
wasn't necessarily good for you, right? Right.
Gasoline on. Yeah. Yeah. JP for it. Yeah. Just
to burn it all. Yeah. The ultimate, the ultimate
barbecue fire pit started. Absolutely. Yeah.
No, there's a, yeah. Something I didn't. Yeah.
Something we didn't know about. Um, and what
was crazy is that, uh, so I got out in, uh, so
I got back from Afghanistan, like, you know,
whatever mid 2012, and then I had like six to
eight months left. And so when I got out, They
noted I had toxic exposure when I got out. I
didn't know it until I filed a claim, May 2024,
and it got immediately denied. But one of the
things that said certain things in your favor
was that we conceded you had toxic exposure.
That was the first time I ever knew about it.
It was 2023. And that word toxic, you went...
Well, what are they talking about here? When
did you get out of service? It was February 2013.
So you had noticed some time after that, I think
I read somewhere quite a number of months later,
you started to have some health issues. When
I got out, I didn't notice I had health issues
when I got out, but they put me on on some medications
a torvastatin and lisinopril for like cholesterol
i wasn't even sure why they put that on me but
they put it they just gave it to me i took it
and then um that was in 2014 i had moved to michigan
in 2014 to the up which you may you know that
Oh, yeah. Yeah. So I moved to I moved to the
U .P. in 2014. I actually was going to like Great
Lakes Boat Building School. So I did some traditional,
you know, got into a trade school and I got with
the VA there. They gave me those two medications
I mentioned. And then there's like they just
would be like, watch your fluids, your potassium,
your sodium. You're fine. You're good. And then
2015, I had gotten a sleep study done and I was
diagnosed with moderate severe sleep apnea. in
2015. And then after that, I really started focusing.
I was going to the gym. I was eating healthy,
you know, eating proteins. Just, you know, getting
really healthy. And then 2017 came around and
then they were like, you know, hey, let's do
a biopsy on your kidney. And I was like, okay.
So we did a biopsy. They're like, you have I.
g. nephropathy and FSGS. And I didn't know what
that meant at all. And it was this very, it was
this Indian nephrologist I say Indian because
he just had a very thick accent. So it was somewhat
hard to understand him. So he hands me this handwritten
script for like Predazone and for some other
meds. And he's like, go down to Walgreens, go
grab it. And I go down to Walgreens and like,
you're going to ask, are you going to pay for
this out of pocket? These are very expensive.
And I said, no, I can't afford this. So shortly
after that, that was late 2017. And then 2018,
I moved to Washington here and I get with the
VA here. And same thing. It's Lysinopril, Torvastatin.
They're like, hey, watch your sodiums. Watch
your potassiums. But you look great. You look
healthy. You're fantastic. How were you feeling
at that point? I felt fine. But when I think
about it, something deep inside me felt off.
Something felt off. I didn't feel quite right.
And that's why I was going to the gym. I was
eating really healthy. I was tracking all my
proteins, carbs, and fats. But despite me fighting
this feeling, it still felt off. Something felt
off still. So yeah, that was 2018, 2019. And
then, yeah, so it wasn't until 2023 that I went
into full kidney failure. Late 2022, I started
having more symptoms, itchy legs. I was having
unexplained tiredness, but I brushed it off.
It wasn't a big deal. Other than that, I was
like doing okay, working full time, busting my
butt. You're you're a young you're a young guy
you're healthy looking You're going like I don't
you know, maybe I just like party too much or
I gotta sleep more or something But yeah, I'll
sleep maybe I'm not sleeping good. I you know,
I got to sleep a CPAP machine So, you know, whatever
it could be that but I was still I'm eating healthy
I'm going to the gym. I'm working full -time
working my butt off and then yeah February 2023
January February I started retaining so much
fluid right it was getting so hard to breathe
I was getting exhausted just doing simple stuff
I finally went to the ER February 2023 and they're
like Sean you have NSAID kidney disease you're
gonna need dialysis you're gonna need a kidney
and those are the first time I've ever heard
those words I've never heard dialysis or organ
transplant in my life until 2023 of February
and then um yeah And this is what I want to get
across to folks is that it's a process of, you
outlined a number of years it took, and really
it was the fluid buildup that kind of manifested,
hey, my kidneys aren't working right. I'm not,
I'll use the polite term, I'm not voiding this
stuff out. I'm retaining all this fluid. But
prior to that, Nobody at the VA said, hey, you
might be starting some kidney problems. Nothing.
Even when I got that biopsy done and this nephrologist
has said you have IG nephropathy and FSGS, nobody
had ever mentioned dialysis or organ failure.
Not those two words. Or where that condition
could lead to. Absolutely. Nobody mentioned this.
Nothing. Not a single. And that's how it's always
been with the VA. It's like that last 10%. of
where it's like that last 10 % of care just is
not there. And that's where, that's where I've
had the hardest time. So, so after 2023 into
2024, you begin thinking about like, how did
this happen to me? Yeah. Yeah. Yep. And, and,
and kind of in your research or was there a doctor
or a nurse who said, Hey, you know, that toxic
exposure you had from the burn pits, that could
have been a source. No. No, I started dialysis
20 so may sorry. Yeah, February. I went into
failure and the VA still was like, hey, let's
put you on some diuretics. Let's put you on tarosamide
and frosamide and let's see if this goes away.
And then so I went in February, March, April,
and it was just getting worse. It wasn't until
a civilian doctor in May said, Sean, if you don't
get emergency surgery, if you don't get emergency
dialysis this weekend, you're not going to make
it. So I had to do that. I had to go out of my
way, go to the ER, opt for dialysis and then
yeah the first time I experienced it you know
I had a little like a it was like a mini seizure
vasovagal little moment but finally I was getting
some fluid off of me and then I started dialysis
it wasn't until You know, it wasn't until I thought
of it until a year later, May 2024, when I was
like, damn, is this is this really my fault?
Like, is this is this not something to do with
the military? Because I'm at the time I'm 34.
Why do I? Like, why am I dealing with kidney
failure at 34? And then there was a luckily sweetheart,
the local VSO, the veteran service officer. I
reached out to her. She's like, file a claim.
And I'm like, oh, duh. I got 30 % when I got
out. And then I got 60 % through the sleep study.
And then that was it. I didn't even know. that
people are filing all the time, you know, for
everything, flat foot or whatever. So I just,
I was, you know, whatever they gave me, anything
I was happy for it. I wasn't trying to. So, but
yeah, so a year later, May 2024, I filed my first
claim for chronic kidney disease. And then that's
when I get denied. And that's when I find out
I had toxic exposure. Nobody told me this, not
for the first full year I was on dialysis. And
the first year was just was a whole thing too.
I went through the different, I started dialysis,
the hemo dialysis in center, and then within
a month, they were like, Sean, let's get you
out the in -home peritoneal dialysis. So I go
under the knife for that surgery. And then I
learn about a new process for dialysis. I learn
how to use the equipment at home. They throw
about 60 boxes in your house. And then your home
turns into a medical facility. And I'm like,
I'm just now learning this whole dialysis in
this life. And then I learn a new process. And
that, I started having problems. It moved. Within
four weeks, it moved. So I had to get a revisional
surgery again. And then it was still problematic.
So let me back you up. Yeah. Is VA providing
medical care on the kidney failure? No, I do
an in -center out of, it's like not through the
VA. There's a local one next to me. But it's
not community care. They're not paying for it.
They are paying for it. They must be paying for
it. Yeah, yes. Okay, through community care.
Okay, good. It's called a, yeah, it's called
Davida is the name of the company. David is a
national dialysis company. I've seen them all
around the country. One of the things here is
I want to highlight for folks is that while the
PACT Act of 2022 made all kinds of diseases related
to burn pits from Vietnam to Afghanistan, presumptive
conditions chronic kidney failure is not. No,
it's not. It's not one of them. So it took me
a year to fight. I was fighting for a year with
that. So you had to go out and get a private
medical, what they call a nexus letter. And for
folks who don't, you know, aren't intimately
involved in this area like you are, or I am as
a disability lawyer, you get a medical doctor
who says it's more likely than not, this is from
this exposure and service. Yes. Yes. So how did
Again, VA doesn't recognize it as presumptive.
How did your doctor convince them, hey, this
is tied back to his service? So I had my first
nephrologist, he retired shortly, but he wrote
me a letter and he had even mentioned about I
had some numbers showing that I had elevated
numbers when I was getting out. And so he had
noted it as least likely as it is not. Um, and
his letter was, uh, was actually pretty helpful.
And then when he retired, there was a new nephrologist
I was signed. And she also wrote me a letter
to, um, advocating saying, you know, that, Hey,
this, this is not, you know, this has, you know,
ties back to the burn pit exposure. And, um,
yeah, yeah. I mean, really those two letters
were huge for me. And one of the things that
a lot of veterans with non -presumptive problems
do is they kind of give up. They say, well, I
did. So shortly after getting denied, I got denied
twice. And then the VSO, she had reached out
to, referred me to the National Veteran Legal
Services Program, and they were wonderful. I
had a lawyer. you know, Mr. Ryan Kelly, he had
all of the information. He had all of the showing
the burn pits and everything tied back to the,
cause I went to, um, in Afghanistan, I was in
Camp Leatherneck, uh, fob Nolay and fob Delaram
and all three of those places had burn pits and
he had all the information on those three places.
And so he was really, really advocating and fighting
for me and it took a lot. I think I was, I think
five denials and we were caught in this loop
because the VA, whenever they um when they get
uh whatever just the process they go because
you know they won't make the decision on themselves
but they will always hire a medical examiner
to do it always an outside medical examiner so
i would they would assign a medical examiner
that medical examiner i swear they are trained
to say no because I I filed complaints with each
of the companies that those medical examiners
were working for because like they'd call me
on the phone I'm like coming out dialysis and
for example the first one she's like so what
symptoms are you having to tell you you have
kidney failure and I'm coming out dialysis so
I was like are you kidding me right now and so
she I knew my little attitude to her I know is
gonna get denied but yeah she was like no not
related and then get denied you know but then
you can submit um what is the word for it a revision
or supplemental claim for more information. Thank
you. Yeah, so I submitted that and then they
go back to another medical examiner and then
I see that person in person. Uh, and then she,
despite all, she denies me and then we go back
again and then I get another person and then
we get denied again. So we're in this circle
and then I finally get approved by, um, because
you know, once you get denied, you can have a
request, an informal hearing with a decision
maker. Right. And that's a rule. I didn't know
about that. I mean, Mr. Ryan Kelly, the lawyer
for NVLSP, he knew, but I mean, how could any
veteran on their own ever know that you can request
an informally here with the decision maker? No.
So we get in this and we're like, hey, we're
just we're getting caught in this loop here like
every single time. So after a year, I finally
got approved for it. And that has been, you know,
a godsend being able to at least I was like I
was coming into financial like losing my home.
I was going to lose my car. I was falling months
behind on all my payments. And despite all so
luckily that worked out. I'm very thankful for
that. You are now getting your disability payments,
but you're getting your dialysis in the community.
Yes. But you're on a transplant list, right?
This is the part, again, most folks never have
experienced this, so I want to educate our veteran
radio listeners a little bit here, Sean. Kidney
disease, chronic kidney disease, Doesn't reverse
itself. There isn't a medication that fixes this
or a surgery, you know clip a little this take
so so You're on a transplant list you you needed
a kidney from somebody Mm -hmm. I do. Yes, and
and when you get with like I'm active on the
VA Portland transplant list and I am I'm inactive
but I'm accepted on the Swedish transplant out
of Seattle because when you are a veteran you
get to have you can have one VA transplant and
one non -VA so you get to be dual listed which
is great. I'm currently I'm working with Swedish
because I'm in I'm inactive until I get a few
things settled with them that would satisfy theirs
because they're they are a little bit more in
depth about their process than the VA is but
both of those are a you know deceased donor And
that's, I mean, to get off dialysis and have
more normal life is absolutely, that's my life
goal now is to have that. But a deceased donor
has an average of eight to 12 years versus a
live donor, which can be 20 plus. So it's just
the difference in life is just so much longer
whenever you get a live donor versus a deceased
one. I want to give a little background of research
that I did getting ready for this, because we've
never talked to anybody in this situation on
Veterans Radio in 22 years of doing it. VA performs
over 150 kidney transplants annually at its VA
transplant centers. I didn't even know they had
VA transplant centers. They have a number of
them, I guess five of them or something. About
16 % of veterans who need kidney transplants
actually go through the vidni. VA transplant
center, but 84 % received a kidney at a non -VA
transplant center. That's what you're talking
about where you're with in Seattle with us. So
these are the sorts of things that like people
don't think about. Wow. I mean this is and I
found on the internet there's like a hundred
thousand people on kidney transplant lists. So
when Sean says, man, I'm waiting. I'm waiting.
I'm on too long a list, but I'm waiting. That's
a lot of people. If people are like waking up
to this because they're listening into you and
saying, man, this guy got a raw deal. How do
you help out? And maybe not even just help out
Sean, that'd be great. But how do people help
others who may need a kidney on a transplant
list? think advocating for yourself I think advocating
for yourself like instead of because you know
in the military it's always like you know you
go and you change your socks you take some Motrin
you keep going like that's that's that's what
I did but like you really need to advocate for
yourself like not just a What are we at? Just
a few months ago, I had another Marine buddy
that I was with. We were in Afghanistan a little
time. He's like, hey, I'm having issues. I'm
getting tired. My legs are itching. I'm having
problems. And I'm like, bro, you need to bring
this up now. You need to take this seriously.
So it's really, if something doesn't feel right,
you have to say something. You really need to
advocate for yourself. Because I don't know what
the system like. It feels like the system is
just overloaded. And so it's so hard that if
you don't advocate for yourself, they're going
to think you're fine. You really need to. One
of the things I'd add to that is at least the
VA doctors know what burn pits are and what tax
exposure is. But if you're out in the community
and you've got a private doctor, they have no
idea what you experienced in the military. That's
true. They don't know what a burn pit is. They
don't know the tax exposure issue. you're right
you have to advocate for yourself if something
just I think you said at the outset something
just didn't feel right in the core something
yeah something didn't feel right that's why I
was like I was always striving to be healthy
and eat healthy and eat right because like something
didn't feel right inside me and it's like at
the end like even if I mean again at least if
they had just been transparent and be like, Sean,
just so you know, like we don't really even if
they had even been like, we don't even care.
Just so you know, you had toxic exposure and
it could lead to this. Like even if they had
said something and even if it ended up with me
on dialysis, I at least could have maybe helped
myself out, you know, by five or 10 years or
something, because I could have been less on
protein or less on fluids, you know, a little
bit more strict than I was. But I. didn't know
anything was really wrong. When I got out, there
was a floodgate that was starting to just slowly
open up and led me to here now. Is there a way
for folks to find out if they have a kidney that
works for you? Or is this more of you're trying
to get the word out that, hey, sign the donor
form on the back of your driver's license so
that if you pass away and your kidney is still
good, somebody else gets it? I do have some.
I have been working with this sweet, sweet lady,
Miss Mickey Jackson. I think she reached out
to you guys. She did. She wrote me an article
asking for a live donor. And so there is a person
on here trying to help me out because my blood
type is O, which means I'm the most common one,
which means a type O usually is like the longest,
like seven to eight years on dialysis before
you get a kidney. And so it's harder as a type
O because everybody can receive one, but only
O can receive O. Um, so, I mean, there was, there's
a person that she had wrote with a phone number
on here. Um, she's a dialysis social worker,
local to here. I can give you her name and number
if anybody wants to reach out and see if they
are. I think that's a good thing. Let's do that.
It's, it's Angie, right? Yes. That's it. So Angie
is the dialysis social worker. Her number in
Seattle is three six zero seven three four. 4243.
I don't have an email for her, but again, I think
you can probably check that out, people, if you're
like, hey man, this motivates me. I want to make
sure that. I got good organs and they don't go
to waste. Absolutely. That would be, I mean,
yeah, it's, uh, I mean, through, through my faith
in God, you know, I believe that I'm here from
fighting for a purpose and a reason. Um, you
know, and I, I've been fighting my whole life,
um, through just my adverse, you know, just problems,
overcoming obstacles. And so, yeah, I just, if
anybody can, that'd be the, that'd be the most
amazing thing possible. I would definitely be
grateful every day of my life for something like
that. Well, you know, it's hard to transition
out of the military. I'm sure you had the same
experience as everybody else does when you transition
out and you were in the process of learning a
new trade, something to get motivated on and
have a passion on, which is what you have to
have when you get out of the military. You got
to find a new passion. Absolutely. And then to
have this huge roadblock is really challenging,
to say the least. So let me give Angie's phone
number again. She's a dialysis social worker,
360 -734 -4243. And tell her, hey, I listened
to Sean and man, you know, Sean Libby made me
call you and I want to figure out how I can help.
Absolutely. That'd be wonderful. Sean, as we
come to the close of this segment, um what do
you want to say to your other veterans and what
do you want to say to the public in general uh
i think you're really advocating for yourself
like it's it's hard because of not it's not the
people that work in the vh but the system itself
it's just everybody stretched so thin um you
know It's just it can be hard and just advocating
for yourself. And if you if there's something
that you think is wrong, like bring it up to
not hold it in. And that was the thing I always
said I always like I put my work in front of
my health for those last few years that really
could have helped me a little bit more. I put
it all into work and I put all my health problems,
all of my concerns to the side. And and it's
hard because I mean, I'm a single guy like I
don't have children. But like I said, I just
you know, I have full time job. whatever, come
out of these. But I don't have a wife and kids.
And if I did, it'd be even harder to step aside
from work and go to your appointments and go
do the blood work. But that's the biggest thing.
Advocating for yourself is the biggest thing
I can say. Well, we appreciate you coming on
Veterans Radio to talk about your situation and
give some advice to your fellow veterans. And
hopefully somebody out there gets motivated.
and reaches out either locally in their own area
or reach out to Angie, see where that might lead,
God may lead it in a direction that neither of
us can imagine at the moment. But stay strong
and we really appreciate you coming on Veterans
Radio. Thank you, Jim. I really appreciate it
for what you do too. I really, really couldn't
be, you know, I appreciate everything that you're
doing and how you're advocating for us veterans
out here. And you've been doing it for how long
you've been doing this? 22 years. 22 years. That's
a lifetime. You know, that is, that's a lifetime.
So thank you. I can't imagine how many thousands
or tens or hundreds of thousands of veterans
have heard you and, and have, you know, benefited
from you. So thank you. And I want to thank everybody
for listening to Veterans Radio today. I am Jim
Fossone. It's been a pleasure to be your host.
I'm a Veterans Disability Lawyer at Legal Help
for Veterans and you can reach us at 800 -693
-4800 or legalhelpforveterans .com on the web.
You can follow Veterans Radio on Facebook and
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