Scott Collins - Cardiac Saroidosis

Speaker 1 (00:04):
Rube when they brought me into triage. The minute they
put the connections on me for the monitors, all help
broke loose. Every alarm went off and there was just
this panic, and I asked a nurse, like, what is
going on? And she said, your heart is beating so fast,
it's not getting enough blood to your body, and we

(00:24):
can't figure out why.

Speaker 2 (00:26):
Many people never really knew that they had it until
something really bad happens.

Speaker 3 (00:33):
He was definitely concerned about the future and if he
was going to be a part of it.

Speaker 1 (00:39):
And my fear was, this doesn't go well, there are
going to be those kids that grew up saying, oh, yeah,
my dad died when I was really young, and I
didn't want that.

Speaker 4 (00:53):
How terrifying would it be to fight an unknown enemy,
one you didn't recognize and didn't he coming. What if
that enemy was coming from within a disease that even
doctors couldn't identify. Nearly half of all Americans suffer from
some chronic illness, and many struggle for an accurate diagnosis.

(01:17):
These are their stories. I Lauren Brete Pacheco and this
is symptomatic. Scott Collins tattoos and love for motorcycles might

(01:42):
suggest a tough exterior, but beneath that, he's a warm
and devoted family man. His big personality lights up any room. Confident, approachable,
and the type of person who can strike up a
friendship with anyone. Okay, so if we weren't sitting here
right now, what would be dream place to be and
what would you be doing? What do you love?

Speaker 1 (02:04):
My kids are growing up, so they're busy a lot now.
I love to spend time with them. Me personally because
of my job, because I'm constantly presenting to people and
talking and in meetings. I just like to be quiet.
I love to be on my motorcycle. I love to
spend time with my dogs. Have three dogs, one small
and two big Bernie Mountain dogs.

Speaker 4 (02:23):
And you're in advertising.

Speaker 1 (02:25):
In advertising, my business partner and I have been together
as a team for fourteen years and it's an intense business,
but it's a lot of fun, especially now that we're
out on our own. Very rewarding. So working weekends and
late nights says okay, because we're doing it for ourselves.

Speaker 4 (02:39):
Rebecca and Scott share a long history. Their story began
at an advertising firm based in Washington, d c. Scott
had just landed a prestigious automotive account and was in
need of an art director. When Rebecca landed that role,
neither of them knew this would mark the beginning of
a lifelong friendship. If you had to describe just three

(03:01):
characteristics that Scott has that you appreciate, what would they be.

Speaker 3 (03:06):
His ability to connect with people. I always tease him
and say it annoys me because everyone loves him, But honestly,
it's a skill. It's just something natural. I think that
he can do is just come in and immediately make
you feel comfortable and make you feel safe to express
your ideas and really wants.

Speaker 4 (03:27):
People to succeed.

Speaker 1 (03:29):
We brought her in and the two of us just clicked.
One of the things in this business as a writer
looking for our directors, that connection you make as a
team is very important because you're throwing ideas out, you're
kind of laying an all online, and you need somebody
you can trust. And early on, very quickly I found
that with Rebecca and found that the work was not

(03:51):
only incredible, but it was more rewarding because we had
a great friendship and it was a lot of fun
working together. The funny thing about Rebecca is early on
she learned how to call BS. I kind of meander
around things I don't want to talk about, and she
figured that out really early on, and so she calls
me on it. So when I was pushing myself and
wasn't feeling well or she could tell and I wasn't
talking about it, she called me on it and would

(04:13):
kind of make me deal with that. The trust we
have for each other and the willingness to get up
and throw ourselves into the madness every day knowing that
we've got, you know, a friend in the foxhole with us, and.

Speaker 4 (04:23):
She actually has been in the foxhole with you in
terms of your health challenges.

Speaker 1 (04:29):
She's been there through the entire journey. It wasn't long
after she came on as my partner when things went
downhill really quick. So she saw it from the get to.

Speaker 4 (04:38):
Go, which coincided with a major milestone for Scott, turning
the Big four to h He decided to use this
landmark as inspiration to get into peak physical shape.

Speaker 1 (04:50):
Growing up, I remember my mom making people cakes with
a foot in the grave and all black and every
was like forty was the big you know hump, and
it wasn't a midlife crisis, but I just felt like
I wanted to get back to working out and feeling
my best. So I started working out vigorously six days
a week. I wasn't drinking alcohol, I was eating only
help food. It was great and everything was going just

(05:12):
as planned. I was feeling my best.

Speaker 4 (05:14):
And you were doing P ninety X, which is that
is not for the week at.

Speaker 1 (05:18):
Heart, it's not, and it promises change in ninety days,
and it did. I mean, I've got a photo my
wife took me with my kids on a beach right
around the time I had finished the first ninety days.
I mean, it was exactly what I wanted to be.
I was fit, I looked healthy, I was happy. And ironically,
it was right around that time that I started to
experience some symptoms and things that seemed off.

Speaker 4 (05:41):
And then it took something visual, something physically visual, for
you to go to the doctor.

Speaker 1 (05:48):
Yeah, I had developed a little bump on the side
of my nose that I just thought was adult acne
or a pimple and just kind of annoying, and I
let it go. But then a couple of weeks went by,
I noticed it was still there, and I held a
hot compress on it and tried a few things, and
it just would not go away. So I went to
a different doctor and the first thing he said was,
you need to have a biopsy. This could have been

(06:09):
cancer just off the cuff, which you know is not
what you're expecting.

Speaker 4 (06:13):
And you hear the word zeroed a hundred, it was.

Speaker 1 (06:17):
See zeroed one hundred and fifty. And I experienced that
a few times in this journey. But so I did
go have a biopsy, and about a week later received
a postcard that my doctor wanted to see me during
his office hours, which was frightening because your mind runs
and I've just heard cancer and now they want to
see me. But they sent a postcard that didn't call.
So I made an appointment and went in and he

(06:38):
was almost excited and fascinated because he said, I've never
seen a case of this. He said, what you have
is called sarcoidosis, which just sounds horrible in a way.
I was glad because it wasn't cancer, but I was curious.
I'd never heard of what sarcoidosis was, and he explained
that it was incredibly rare.

Speaker 4 (06:57):
Sarakoidosis is an inflammatory disease that can affect various organs
in the body. Due to its rarity, research is limited,
making it difficult to fully understand or treat. It often
presents as a mystery to doctors and patients alike, as
the symptoms can vary greatly.

Speaker 1 (07:16):
He said, you're the first case I've ever seen. You're
probably the last case I'll ever see. And the majority
of people who get sarcoidosis it just resolves on its own.
But he said, we're not going to do anything. We'll
keep an eye. Don't go online and research it. If
you go to WebMD, it'll scare the hell out of you.

Speaker 4 (07:33):
And of course you immediately went on.

Speaker 1 (07:35):
I did, and it was frightening, but I just kind
of relied on what he said, which is this is
going to resolve itself, and so I forgot about it.

Speaker 4 (07:42):
So the bump went away, and so did your thoughts
about sarcoidosis.

Speaker 1 (07:48):
It did.

Speaker 4 (07:49):
Scott easily immersed himself back into his work. However, a
year later, a persistent cough sparked new.

Speaker 1 (07:56):
Concerns and wasn't an allergy type cough. Like I had
a cold. I couldn't not cough and it was loud,
so I would close my door and it would happen
for bouts of minutes at a time.

Speaker 4 (08:07):
Did you think allergies, did you think?

Speaker 1 (08:09):
I asked. I had never felt it. I grew up
with allergies, I grew up with asthma, and it was
nothing like I had experienced. So I went to my
GP and he said, it's definitely allergies, and he gave
me some medicine, and about a week later I went
back and it hadn't subsided, and he tried another medication.
At one point, the coughs were bad enough I actually
cracked a rib. I mean, that's how violent were and

(08:32):
I could not suppress it, so it became worrisome. But
they did chest x rays and they said nothing looks off,
and over about a month and a half or so,
it started to taper off on its own. So to
your point, I just forgot about it and I went
back to working out. Everything seemed fine.

Speaker 3 (08:48):
He didn't like to talk about it and dwell on it.
He wanted to really just keep going business as usual.

Speaker 4 (08:58):
Though they would come and go. Erratic symptoms began to
plant seeds of doubt in Scott's mind. After ignoring them,
for another year and a half. New manifestations became impossible
to overlook.

Speaker 1 (09:11):
The symptoms that really got me that I couldn't understand
were heart related, and it started. I can remember the
exact night. It was about eleven thirty or so. I
was going to bed. It was quiet, and all of
a sudden, in a completely resting state, my heart was racing,
as if I'd been on a treadmill, and I remember
sitting up and just gasping for air. It came out
of nowhere, and then I would feel these just really

(09:34):
hard beats.

Speaker 4 (09:37):
What did you make of it at the time? Did
you think it was anxiety?

Speaker 1 (09:41):
That's exactly what I thought. My whole life had been
prone to overthinking things and being stressed and anxious about work,
and so I figured that's what it was. And maybe
i'd been drinking too much coffee. I'll watch that, and
things seemed to go back to normal.

Speaker 3 (09:54):
He doesn't always react the best to someone confronting him
with things like that, but I think he really likes
to make everyone else feel at ease with humor and
stories and making everything fun, so you know, on the surface,
going through something like this, he doesn't really want to

(10:16):
talk about it a whole lot.

Speaker 1 (10:19):
But then it started to pick up and it was
happening again and again. I went in to see my
doctors and explain what was happening. And what's interesting with
things like this is the protocol is about a ten
second EKG. They put all the electros on you, They
run the EKG for about ten seconds, pull everything off,
look at it, and they said everything was.

Speaker 4 (10:37):
Great, and you're physically presenting as someone who's an optimal.

Speaker 1 (10:41):
Health, absolutely great shape. They asked a lot of questions
and I took comfort. That's what I wanted to hear
was everything was fine. So I went home, but you know,
your own body, and I started to experience this even
during the day. I would feel like just out of
the blue. It's hard to describe, but things would get
kind of quiet. It was almost like they were cotton
in your ears. You could hear your heart and it
would start racing. So I think I went into the

(11:02):
doctor probably four or five times with those same symptoms.
And it was interesting because I went and the doctor
who was going to be performing the test walked in.
He goes, what are you doing here? And I explained it.
He goes, you're imperfect health.

Speaker 4 (11:18):
So what was the reaction you were getting.

Speaker 1 (11:20):
The reaction was interesting. At first they were interested, and
then I wouldn't say annoyed, but I was coming in
with the same thing and I was getting the same results.
At one point they gave me some anti anxiety medication
and that did nothing. But after I mean, I don't
know if it was four or five six times of
going in, my doctor came in one day and just said,
I fear that you're a hypochondriac. And he said it

(11:41):
directly to me, and I was shocked because I had
never been more in tune with my body and I
knew something was off. And I was frustrated and explained
to him there's something going on. I just know there is.
And so his response was, if I just throw the
book at it, if I run every test I can
think of and they come back negative, promised to not
come back, that's the deal. And I said, one hundred percent, absolutely,

(12:03):
let's do it.

Speaker 4 (12:05):
Over the course of two days, Scott underwent a series
of tests, including real time heart monitoring, multiple blood panels,
and detailed imaging of his heart. What a strange mental
challenge that must have been for you, because Normally, when
people are subjected to that barrage of testing, they're hoping

(12:29):
that nothing is found, and you're hoping that something is
found to validate what you've been feeling.

Speaker 1 (12:37):
At this point. That's what I wanted. I didn't want
to believe I was a hypochondriac, so a large part
of me did want them to find something, because then
at least there was a course, there was a path forward.
Here's what we're going to treat this and to remedy
this and to fix this. It was Friday afternoon and
I'm thinking, I'm going to go home and I'm going
to work out, and I got a phone call from
a nurse at my doctor's office who said, the doctors

(13:00):
have seen some things in the tests that are concerning
to them, is what she said, and they'd like to
see you Monday morning. And I remember hanging up and
being so frustrated because now I have the whole weekend
to overthink this. They found something, and now I.

Speaker 4 (13:13):
Got away, and I say to hear that on a
Friday is not ideal.

Speaker 1 (13:18):
It wasn't well.

Speaker 4 (13:20):
Scott's concerns that something was wrong were being validated. The
lack of information going into the weekend added to his stress,
but Scott wouldn't make it to Monday without answers.

Speaker 1 (13:34):
Saturday, my wife and I went over to my mother
in law's house. I just remember that feeling came over
me where I felt like my head was packed with cotton.
I couldn't really hear them anymore, and I got numb,
starting with my face. I remember my lips started to
tingle and my arms got numb. So I sat down
because I was afraid I was going to pass out.
And all I could think was something's wrong, something is

(13:56):
very wrong, and I couldn't say it. I couldn't get
the words out.

Speaker 4 (14:00):
Oh my gosh. So it's almost like those trapped nightmares
where you can't even scream to wake yourself up.

Speaker 1 (14:06):
It's exactly what it was. And I'm sitting on this
couch and I can see the two of them talking,
and I don't know if I made a noise or what,
but I remember my mother in law looking at me
and she was like, my god, you're pale as a ghost.
And at that point there was no question. They just
got me to the car and my wife drove me
to the hospital, and the minute we went in, they
dropped me into a wheelchair and rushed me back. So

(14:29):
my wife had mentioned there's something wrong with his heart.
And when they brought me into triage, I mean the
minute they put the connections on me, for the monitors,
all help broke loose, every alarm went off, and there
was just this panic. And for the remainder of that day,
in that evening, it was just a constant back and
forth with doctors and nurses running in. They would run in,

(14:50):
tell me to take deep breaths, try to relax, and
it's not easy to do when this is happening. And
I finally was able to talk and interact again, and
I asked a nurse what is going on? And she said,
your heart is in VT and we can't figure out why.
So I was in partricular tachycardia and she said, the
bottom of your heart is beating so fast it is
not getting enough blood to your body.

Speaker 4 (15:15):
Ventricular tachycardia is a serious condition where the heart beats
abnormally fast, starting in the lower chambers. If left untreated,
it can lead to fainting, heart failure, or even sudden
cardiac arrest. How did you not die?

Speaker 1 (15:32):
One of my doctors feels that I was equal parts
lucky and also because I had been working out so hard.
He feels that my heart was just strong enough. It
was barely getting me by. And in hindsight, leading up
to this, I can remember trips we took as a family.
I was walking around the beach, not feeling well, driving
all these times this is happening, not realizing my heart

(15:54):
was slipping into VT.

Speaker 4 (15:57):
At this point, Scott was on the brink in with
seemingly random symptoms now leading to ventricular tachycardia. The physical
struggle was clear that the mental toll was just beginning
to surface.

Speaker 1 (16:11):
I laid in bed that night and it's like, I've
got a family with young kids who you know, my
daughter would remember me, my son maybe a bit. I've
got a career like I can't afford to pay my
bills if I'm not working. Rebecca had just come on. She's,
you know, a brand new partner to me, and I'm
texting people like I'm not going to be at work
for a while. It's not looking good. Some things are happening.

(16:32):
And trying to process all of this in.

Speaker 4 (16:36):
Terms of concerns for his health or longevity. Do you
remember Scott ever voicing his fears about the.

Speaker 3 (16:47):
Future, absolutely, because there were ups and downs for a
very very long time. So I mean he was definitely
concerned about the future and if he was going to
be a part of it, which I think is something
that was very difficult for him to wrap his mind
around and live with every day. I mean, how do

(17:09):
you live with not knowing? It's not like the doctors
could say you have X number of years. They just
didn't know, And how do you process that and live
with that and go on with your life not knowing.

Speaker 4 (17:23):
We'll be right back with Symptomatic a Medical Mystery Podcast.
Now back to Symptomatic a Medical Mystery Podcast. At forty,
Scott was in peak physical shape. Then a small bump
on his nose led to a surprising sarcoidosis diagnosis. Doctors

(17:48):
reassured him it was nothing serious, but his symptoms, including
a racing heart, persisted. Scott's concerns grew confident there was
more to the story. Scott pushed for more tests. Then
came a terrifying episode. Suddenly unable to speak or move,
he faced a life threatening heart condition.

Speaker 1 (18:22):
And then as we got into the wee hours of the night,
I couldn't sleep fewer doctors and nurses were coming in.
They were starting to get it under control, and it
was about eight in the morning when cardiologists came in.
It was almost like a movie. He came in and
as he was reading my chart, he would bounce on
his toes, up and down on his toes, and then
about every fourth time he would click.

Speaker 4 (18:40):
His heels and the Wizard of Oz.

Speaker 1 (18:43):
It was unsettling, but I'm just like, get to it.
What is this? And he just kept bouncing and then
he put the chart behind his back and looked at
me and said, we may be looking at a transplant.

Speaker 4 (18:54):
The news was a lot to take in, hard to
even process, but Scott wasn't about to accept that without
seeking a second opinion.

Speaker 1 (19:02):
Another doctor came in and said, we've got tricks up
our sleeves and we're going to get to the bottom
of this. So they transferred me to another hospital in
Virginia and Nova Fairfax, which has got a great cardiologist
department and is known for dealing with severe heart issues.
I was given a very long MRI. I remember it
taking forever. It just kept going and going and going,

(19:24):
and then being brought back to my room and a
doctor came in and she said, we've figured out what's
happening is you have cardiacs arquidosis. And that's when my
brain reeled back and I was like, my god, we
knew all along, and we somehow all dropped the ball
on this.

Speaker 4 (19:42):
The most insidious of medical mysteries because it was solved
in the beginning.

Speaker 1 (19:48):
It was solved in the beginning and then forgotten because
nobody gets this, and especially a forty year old guy
who's working out, and everybody thought it would resolve itself.

Speaker 4 (19:56):
And so it's allowed to progress under your radar, under
medical radar, until it arrives at the worst possible manifestation
of the condition.

Speaker 1 (20:09):
Yeah, and by then it was in my lungs, my spleen,
my liver, and my heart.

Speaker 4 (20:15):
Doctor Mitchell Sotka is the chief of heart Failure and
transplant at a Nova Shaw Heart and Vascular in Falls Church, Virginia,
the expert Scott would later turn to in his journey.
Doctor Sotka breaks down the rarity of cardiac sarcoidosis.

Speaker 2 (20:31):
For us, it is a relatively rare disease and one
that many people are not comfortable managing, even cardiologists, even
many heartfare specialist cardiologists.

Speaker 4 (20:43):
Just taking a little step back, could you define for
the listener what sarcardosis is and also explain why it's
so challenging to treat.

Speaker 2 (20:53):
Sure so, sarcoidosis as a broad condition is probably an
inflammatory condition that is autoimmune, meaning it is your body
fighting against itself or attacking itself. But what happens is
it is inflammation caused by your immune system attacking your body.
And this disease can occur in quite literally any part

(21:16):
of the body and is most common in the lungs,
but can also happen more infrequently in the heart. This
inflammation that is part of the disease can come and
go and in many cases is not very injurious and
can be watched pretty conservatively. For whatever reason, when it
happens in the heart, it tends to be much more
aggressive and tends to cause persistent inflammation that then leads

(21:38):
to scar or permanent damage in the heart, and this
can be associated with a number of problems this can
cause in the heart, heart rhythm problems that can be deadly.
It can cause the heart muscle not to do its
primary job, which is to pump blood very well and
cause something called heart failure, and it can cause it's

(22:00):
another rhythm problem, which is called heart block, where the
heart does not receive the signals it needs to know
and to pump or to beat, and can actually just
stop beating.

Speaker 4 (22:10):
Sarcotisis never came up from the time you had the
bump to the time you were getting EKGs.

Speaker 1 (22:17):
Correct, and I take responsibility for some of that. I
think hearing the word cancer and then hearing this word
sarcoidosis were things I didn't want to think about, so
I just kind of pushed those in the back of
my head and thought, I don't have to worry about those.
Something else is happening. So it never even crossed my mind.
And during all of those doctor's appointments, no one ever said, Hey,

(22:38):
this isn't here, we should take a look at this.
I think, like I said, the numbers are so rare.
There are very few doctors in the world that have
experience with it. There are very few specialists.

Speaker 2 (22:48):
We know that many people even with sarcotis that the
heart never really knew that they had it until something
really bad happens. In fact, the most common preason of patients'
first association with the medical system due to sarcoidosis if
they have it in their heart is of suddenly dying,

(23:08):
and this is often from one of these heart rhythm
problems called ventricular attach ofcardia.

Speaker 4 (23:13):
Scott was incredibly lucky to survive his VT episode, something
often fatal for those with cardiac sarcoidosis. Now recognizing the
clues that had been there all along and understanding the
severity of his condition, he realized his heart remained far
from stable after all distress and flare ups. The next

(23:33):
step was to insert a defibrillator, a device that will
literally shock his heart to a higher rate during an arrhythmia,
then slow it back to a normal pulse. I think
that there has to be in your case, particularly such
disbelief because you were so healthy, you were trying so
hard to do all the right things to achieve longevity.

(23:59):
Were you angry?

Speaker 1 (24:00):
I was. I went through all of the feelings, just depression,
the anger, why me, the embarrassment to be honest with you,
and no clear cut path. I asked every doctor like,
what's the prognosis? And they wouldn't give me one because
they couldn't.

Speaker 4 (24:15):
As he lay in bed alone at night in the er.
Fearing what might come, Scott's creative instincts took over.

Speaker 1 (24:23):
The only way I could deal with it is to
do what I do every day, which is right. And
so I wrote some really powerful letters.

Speaker 4 (24:32):
To my kids I can't even imagine.

Speaker 1 (24:34):
Which they've never read. Really, and my fear was this
doesn't go well. There are going to be those kids
that grow up saying, oh, yeah, my dad died when
I was really young, and I didn't want that, and
so I wrote each of them an exhaustive letter. It
was basically an apology, but just wanted them to know
who I was. And that was the last thing I
could do that night. And I remember putting my computer

(24:56):
down because I had asked to have it with me.
I always had my computer, and I didn't sleep, and
I couldn't tell you how I process things because I
don't think I was at that point.

Speaker 4 (25:08):
With a defibrillator now in place, workouts were off limits,
and an uneasy fear of being shocked loomed over. Scott
restless at home. Recovery was taking a toll. Despite doctors' orders,
he pushed to return to work, hoping to re engage
with the world. How difficult was it to watch him

(25:28):
navigating his health challenges.

Speaker 3 (25:31):
At times it's extremely difficult, but at other times I
almost forget, which I feel bad about because he's so
good at masking it and just powering on and being
business as usual. There have been many times I try
my best to understand, but knowing full well, I can't

(25:54):
fully understand. So I just try to give him as
much professional support and support as a friend that I
possibly can.

Speaker 1 (26:06):
There was one day I was in a meeting and
I started to feel and I'm pretty sure it was
the VT, just short little bursts and I wasn't being shocked,
but something was happening. And I went back to my
office and she walked in and she said, you don't
look like you're feeling well. And she would say, like,
you've got to go, you need to go home.

Speaker 4 (26:24):
Do you remember how it was manifesting itself physically on him.

Speaker 3 (26:28):
It was everything, It was his body language. He was pale.
As soon as I walked in the office and actually
took a moment to look at him. I knew in
a second something very bad was happening, you know, And
I knew at that point it was going to take
a lot for him to do something about it. I said,

(26:50):
we will leave right now. I will go pull my
car up and I will drive you to the hospital.
Like I just had this overwhelming feeling that things were
not okay at all, and you were right Unfortunately.

Speaker 1 (27:06):
I said, I got to get out of this office.
So she walked with me and there were some backsteps
back exit by the garage, and I just wanted to
sit out there, and she sat with me and waited
for my wife to come. And it was equal parts
comforting having somebody there, but also I just wanted to
be alone, because again, it was just that's the only
way I can put it. Was embarrassing and it was frustrating.
So we got home and I'll never forget my son

(27:29):
was at the table in his little hicher and he
was eating He's four years old. And I did not
feel well, and I walked into the kitchen and out
of the blue, my device fired and I won't say
what I said, and I yelled it and my son
learned a new word. I mean, it just came out
of nowhere and dropped me to the floor. And I've
even had doctors ask me, what does it feel like

(27:51):
for your device to fire? And the only way I
could put it was imagine a horse with electrified shoes
kicking you right in the chest. Your eyes flashway, your
ears crack, and I mean it is like getting punched
as hard as you can in the chest.

Speaker 4 (28:08):
Paramedics arrived, quickly, distracting his son to shield him from
the harsh reality of his father's condition, and rush to
stabilize Scott.

Speaker 1 (28:17):
They're wiring me up and cutting my shirt off and
getting me on a gurney and getting me out of there,
and you know, you've got an ambulance sirens going, and
it was frightening. And I got to the hospital and
they had me on monitors and I think the scariest
thing I've ever heard was the doctor at Hopkins, who
could see everything he was watching on their monitors, and

(28:40):
he was on speakerphone said he is not stable enough
to move. Cancel the life light. And that was the
moment I was like, this is it. This is where
I go. I'm in the ICU and they can't stop this.
They came in and they put in my IV. They
started to drip an insane amount of a drug called
amiotor room, which is for heart arrhythmias and all day

(29:04):
and all night, just nurses coming in and checking on
me and making sure my meds were in.

Speaker 4 (29:08):
Scott's worst fears came to life when his device fired. Thankfully,
doctor stabilized him with a cardiac ablation, a procedure that
kills small areas of the heart tissue that are causing
irregular heart beats. It was enough to get him back home,
where he began to take high doses of predmozone hoping
to avoid another cardiac episode.

Speaker 1 (29:30):
And at one point they had me at forty milligrams
a day, which you feel like you're going crazy. You're
in fight or flight mode. So my cardiologist left, moved
out of state, and the rest of the practice had
no experience. My device only fired one more time. It
was about a year later, and I was on the
treadmill and suddenly I felt funny and that was a burst,

(29:51):
and then it lit me up. So I had my
second ablation surgery. And that practice it felt like just
a shrug, like we don't know what else we can
do for you. And that's when my pulmonologists introduced me
to doctor Sukka, who he said, do you really need
to go see him? And he spent about forty five
minutes with me, just talking to me and asking me

(30:12):
questions and wanted to really fully understand everything that had
happened and how I arrived at his door. And when
we were done, he said, I will treat you, but
I will go at this aggressively, and I need you
to understand that if you're willing to go with me
on this journey, I will treat you. And he said,
one of the first things I want to do is
I want to get you off a pregtizone. At the time,

(30:33):
I think I was at twenty five milligrams a day.

Speaker 2 (30:37):
I do remember meeting him the first time. He was
referred to me by another physician very appropriately to help
out with his case, which was complicated and he had
struggled with his disease for a long time, and I
remember he was in the room and clearly struggling with
the diagnosis and the treatments and where to go next.

(31:01):
I remember him being very excited when I said to him,
I think I have something that we can do differently.
And it was not just me, it was a team
of people that could get together and really offer him
a different treatment course that I think would be much
more palatable for him and put him in a better

(31:22):
place symptomatically and with his disease.

Speaker 4 (31:26):
You mentioned that he was a challenging case, what in
particular presented challenges for you?

Speaker 2 (31:32):
So I think in his case, as I mentioned, heart
sarcoidosis can be particularly refractory to treatment over time, and
in his case, that is what a lot of his
other physicians had been struggling with, is that every time
they tried to reduce his dosing of immuna suppression, he
had recurrence of his sarcodosis of his heart. And this

(31:55):
was symptomatic, meaning he felt pretty terrible and also it
wasangerous in that he was having these abnormal heart rhythms.
So his clinical team before he got to us really
didn't know how to handle that, didn't know how to
adjust his immune suppression therapy and regimen to get him

(32:16):
onto alternative agents that wouldn't have so many side effects.

Speaker 4 (32:20):
Doctor Sotka's first goal was to gradually reduce Scott's preadnizone
due to its severe side effects including weight gain, mood swings,
and high blood pressure. However, attempts to taper off were
challenging as infections took over his weekend immune.

Speaker 2 (32:36):
System, and I think it really took us years to
get to the place where I felt like we had
gotten him where I said, I was going to try
to get him to a place where he was on
a regiment that did not cause him a lot of
side effects, where he felt better, where he could exercise more,
and where I felt like the long term outlook for

(32:59):
him was very good as opposed to be more uncertain.

Speaker 1 (33:04):
He said, if we can get you to where it's
not showing up on pet scans, then we know the
medications are working. And that's where I've been for a
number of years now. So I'm kind of in maintenance mode.

Speaker 4 (33:15):
After years of searching for a diagnosis and navigating near
death experiences, Scott was still grappling with the anxiety attached
to the very device that keeps him alive.

Speaker 1 (33:26):
It's taken me a long time to mentally get back
to where I feel like I'm kind of myself again.
For me, there was PTSD from my device firing. There
were nights I couldn't sleep because I was so for
any little thing in my chest. I felt like, here
it comes, and I would brace and it was a
terrible place to be and seeking out people I could
speak to to get through that made a huge difference,

(33:48):
and then being able to get back to my nine
to five where it's just like I wake up and
I've got a job to do, and I when I'm
done with work, I've got my kids and my dogs
and you know, my motorcycle. Like I'm just trying to
normal life.

Speaker 2 (34:01):
His mental fortitude, as you mentioned, despite all the shocks
that he had had and the anxiety that that can
produce and the complicated path, was really down to him
mentally being strong enough to get through this process. But
I hope that we helped him get there along the way.

Speaker 4 (34:17):
In terms of your milestones, how many of you blown
away at this point?

Speaker 1 (34:20):
So it was one year and they said, if we
can get you to a year, we believe we'll get
you to three. If we get you to three, you're
going to ten. Get past ten, and you should expect
to live a fairly normal lifespan. And so for me,
that was my goal is I got to get to ten.
And twenty twenty two was eleven.

Speaker 4 (34:41):
With his symptoms finally under control, Scott decided to take
a chance with Rebecca and start their own advertising agency,
The Creative Cartel. Now he's working on a memoir to
share his journey in the industry and his fight with
the disease. But there's one part of his story that
matters most his kids.

Speaker 1 (35:00):
The cool thing about my kids is that they don't
look at me as being sick. They've kind of put
it in terms for me, and I think in a
way they sensed I needed to hear it, that I
beat it, I conquered it, and I was strong enough
to get through it. I remember my son saying, you're
kind of like Iron Man. Now, that was the way
he looked at it. But hearing them talk about it

(35:23):
in a very positive way and that I'm a success
is great. My daughter's even said, like, the things you've
gotten through and your work ethic is so apparent that
it's inspiring to them.

Speaker 4 (35:36):
What do you hope that people take away from Scott's story.

Speaker 3 (35:39):
I think how you deal with something that comes your way,
even if it's just the worst possible situation and not
fair and not deserve. You know, you've gone through so much,
how you come out on the other end of it
is up to you. You can navigate that to some extent.

(36:04):
Is how you think about it and how you move
forward and the attitude you take on, and that can
have a profound impact on your health and your well being.

Speaker 1 (36:14):
I hate to sound too optimistic, because I was at
a point in my life where I wasn't and can
be very understanding of how frustrating and scary that is.
You can't be defined by a condition. You have to
take it back. Last year, I took a motorcycle trip
from northern Virginia to Kansas to go speak at my
high school. I'm doing everything I can to take me

(36:35):
back because that's what we all deserve. I think we
all have to have that part of ourselves.

Speaker 4 (36:41):
You can find out more about sar coidosis and cardiac
sar coidosis in particular on the Foundation for sar Codosis
Research website at Stop Sarkoidosis dot org.

Speaker 1 (36:54):
My name is Scott Colin, and for thirteen years I've
been in and out of hospitals battling life threatening complications
brought on by a rare disease called sarcoidosis.

Speaker 4 (37:04):
On next week's episode of Symptomatic Mela Clark was a
busy crisis communications professional working in a fast paced, high
pressure environment. The constant stress made it hard for her
to notice the symptoms creeping in, at first feeling tired
and thirsty, then escalating to full on exhaustion and rapid
weight loss, until things took a more serious turn.

Speaker 5 (37:28):
I was making myself breakfast and I fainted and I
kind of like came to I woke up. I was
really confused, and I was like, I don't know what
just happened, but I know that's not normal. And I
just started bawling because I was so scared and frustrated.

Speaker 4 (37:47):
Diligently working to combat her symptoms. Mela's diagnosis post complications
even her doctors didn't see coming. As always, we would
love to hear from you. Send us your thoughts on
this episode or share a medical mystery of your own
at Symptomatic at iHeartMedia dot com, and please rate and

(38:09):
review Symptomatic wherever you get your podcasts. We'll see you
next time. Until then, be well. Symptomatic is a production
of Ruby Studio from iHeartMedia. Our show is hosted by
me Lauren Bret Pacheco. Executive producers are Matt Ramano and myself.
Our EP of post production is James Foster. Our supervising

(38:30):
producer is Cierra Kaiser. Our writers are John Erwin and
Diana Davis, and our editor is Cierra Spreen.