Speaker 1: Rube when they brought me into triage. The minute they
Speaker 1: put the connections on me for the monitors, all help
Speaker 1: broke loose. Every alarm went off and there was just
Speaker 1: this panic, and I asked a nurse, like, what is
Speaker 1: going on? And she said, your heart is beating so fast,
Speaker 1: it's not getting enough blood to your body, and we
Speaker 1: can't figure out why.
Speaker 2: Many people never really knew that they had it until
Speaker 2: something really bad happens.
Speaker 3: He was definitely concerned about the future and if he
Speaker 3: was going to be a part of it.
Speaker 1: And my fear was, this doesn't go well, there are
Speaker 1: going to be those kids that grew up saying, oh, yeah,
Speaker 1: my dad died when I was really young, and I
Speaker 1: didn't want that.
Speaker 4: How terrifying would it be to fight an unknown enemy,
Speaker 4: one you didn't recognize and didn't he coming. What if
Speaker 4: that enemy was coming from within a disease that even
Speaker 4: doctors couldn't identify. Nearly half of all Americans suffer from
Speaker 4: some chronic illness, and many struggle for an accurate diagnosis.
Speaker 4: These are their stories. I Lauren Brete Pacheco and this
Speaker 4: is symptomatic. Scott Collins tattoos and love for motorcycles might
Speaker 4: suggest a tough exterior, but beneath that, he's a warm
Speaker 4: and devoted family man. His big personality lights up any room. Confident, approachable,
Speaker 4: and the type of person who can strike up a
Speaker 4: friendship with anyone. Okay, so if we weren't sitting here
Speaker 4: right now, what would be dream place to be and
Speaker 4: what would you be doing? What do you love?
Speaker 1: My kids are growing up, so they're busy a lot now.
Speaker 1: I love to spend time with them. Me personally because
Speaker 1: of my job, because I'm constantly presenting to people and
Speaker 1: talking and in meetings. I just like to be quiet.
Speaker 1: I love to be on my motorcycle. I love to
Speaker 1: spend time with my dogs. Have three dogs, one small
Speaker 1: and two big Bernie Mountain dogs.
Speaker 4: And you're in advertising.
Speaker 1: In advertising, my business partner and I have been together
Speaker 1: as a team for fourteen years and it's an intense business,
Speaker 1: but it's a lot of fun, especially now that we're
Speaker 1: out on our own. Very rewarding. So working weekends and
Speaker 1: late nights says okay, because we're doing it for ourselves.
Speaker 4: Rebecca and Scott share a long history. Their story began
Speaker 4: at an advertising firm based in Washington, d c. Scott
Speaker 4: had just landed a prestigious automotive account and was in
Speaker 4: need of an art director. When Rebecca landed that role,
Speaker 4: neither of them knew this would mark the beginning of
Speaker 4: a lifelong friendship. If you had to describe just three
Speaker 4: characteristics that Scott has that you appreciate, what would they be.
Speaker 3: His ability to connect with people. I always tease him
Speaker 3: and say it annoys me because everyone loves him, But honestly,
Speaker 3: it's a skill. It's just something natural. I think that
Speaker 3: he can do is just come in and immediately make
Speaker 3: you feel comfortable and make you feel safe to express
Speaker 3: your ideas and really wants.
Speaker 4: People to succeed.
Speaker 1: We brought her in and the two of us just clicked.
Speaker 1: One of the things in this business as a writer
Speaker 1: looking for our directors, that connection you make as a
Speaker 1: team is very important because you're throwing ideas out, you're
Speaker 1: kind of laying an all online, and you need somebody
Speaker 1: you can trust. And early on, very quickly I found
Speaker 1: that with Rebecca and found that the work was not
Speaker 1: only incredible, but it was more rewarding because we had
Speaker 1: a great friendship and it was a lot of fun
Speaker 1: working together. The funny thing about Rebecca is early on
Speaker 1: she learned how to call BS. I kind of meander
Speaker 1: around things I don't want to talk about, and she
Speaker 1: figured that out really early on, and so she calls
Speaker 1: me on it. So when I was pushing myself and
Speaker 1: wasn't feeling well or she could tell and I wasn't
Speaker 1: talking about it, she called me on it and would
Speaker 1: kind of make me deal with that. The trust we
Speaker 1: have for each other and the willingness to get up
Speaker 1: and throw ourselves into the madness every day knowing that
Speaker 1: we've got, you know, a friend in the foxhole with us, and.
Speaker 4: She actually has been in the foxhole with you in
Speaker 4: terms of your health challenges.
Speaker 1: She's been there through the entire journey. It wasn't long
Speaker 1: after she came on as my partner when things went
Speaker 1: downhill really quick. So she saw it from the get.
Speaker 4: To go, which coincided with a major milestone for Scott,
Speaker 4: turning the Big four to h He decided to use
Speaker 4: this landmark as inspiration to get into peak physical shape.
Speaker 1: Growing up, I remember my mom making people cakes with
Speaker 1: a foot in the grave and all black, and it
Speaker 1: was like forty was the big, you know hump, and
Speaker 1: it wasn't a midlife crisis, but I just felt like
Speaker 1: I wanted to get back to working out and feeling
Speaker 1: my best. So I started working out vigorously six days
Speaker 1: a week. I wasn't drinking alcohol, I was eating only
Speaker 1: help food. It was great and everything was going just
Speaker 1: as planned. I was feeling my best and.
Speaker 4: You were doing P ninety X, which is that is
Speaker 4: not for the week at.
Speaker 1: Heart, it's not, and it promises change in ninety days,
Speaker 1: and it did. I mean, I've got a photo my
Speaker 1: wife took me with my kids on a beach right
Speaker 1: around the time I had finished the first ninety days.
Speaker 1: I mean, it was exactly what I wanted to be.
Speaker 1: I was fit, I looked healthy, I was happy. And ironically,
Speaker 1: it was right around that time that I started to
Speaker 1: experience some symptoms and things that seemed off.
Speaker 4: And then it took something visual, something physically visual, for
Speaker 4: you to go to the doctor.
Speaker 1: Yeah, I had developed a little bump on the side
Speaker 1: of my nose that I just thought was adult acne
Speaker 1: or a pimple and just kind of annoying, and I
Speaker 1: let it go. But then a couple of weeks went by,
Speaker 1: I noticed it was still there, and I held a
Speaker 1: hot compress on it and tried a few things, and
Speaker 1: it just would not go away. So I went to
Speaker 1: a different doctor and the first thing he said was,
Speaker 1: you need to have a biopsy. This could have been
Speaker 1: cancer just off the cuff, which you know is not
Speaker 1: what you're expecting.
Speaker 4: And you hear the word zeroed a hundred, it was see.
Speaker 1: Zeroed one hundred and fifty. And I experienced that a
Speaker 1: few times in this journey. But so I did go
Speaker 1: have a biopsy, and about a week later received a
Speaker 1: postcard that my doctor wanted to see me during his
Speaker 1: office hours, which was frightening because your mind runs and
Speaker 1: I've dishard cancer and now they want to see me.
Speaker 1: But they sent a postcard that didn't call. So I
Speaker 1: made an appointment and went in and he was almost
Speaker 1: excited and fascinated because he said, I've never seen a
Speaker 1: case of this. He said, what you have is called sarcoidosis,
Speaker 1: which just sounds horrible in a way. I was glad
Speaker 1: because it wasn't cancer, but I was curious. I'd never
Speaker 1: heard of what sarcoidosis was, and he explained that it
Speaker 1: was incredibly rare.
Speaker 4: Sarakoidosis is an inflammatory disease that can affect various organs
Speaker 4: in the body. Due to its rarity, research is limited,
Speaker 4: making it difficult to fully understand or treat. It often
Speaker 4: presents as a mystery to doctors and patients alike, as
Speaker 4: the symptoms can vary greatly.
Speaker 1: He said, you're the first case I've ever seen. You're
Speaker 1: probably the last case I'll ever see. And the majority
Speaker 1: of people who get sarcoidosis it just resolves on its own.
Speaker 1: But he said, we're not going to do anything. We'll
Speaker 1: keep an eye. Don't go online and research it. If
Speaker 1: you go to WebMD, it'll scare the hell out of you.
Speaker 4: And of course you immediately went on.
Speaker 1: I did, and it was frightening, but I just kind
Speaker 1: of relied on what he said, which is this is
Speaker 1: going to resolve itself, and so I forgot about it.
Speaker 4: So the bump went away, and so did your thoughts
Speaker 4: about sarcoidosis. It did. Scott easily immersed himself back into
Speaker 4: his work. However, a year later, a persistent cough sparked new.
Speaker 1: Concerns and wasn't an allergy type cough. Like I had
Speaker 1: a cold. I couldn't not cough and it was loud,
Speaker 1: so I would close my door and it would happen
Speaker 1: for bouts of minutes at a time.
Speaker 4: Did you think allergies, did you think?
Speaker 1: I asked. I had never felt it. I grew up
Speaker 1: with allergies, I grew up with asthma, and it was
Speaker 1: nothing like I had experienced. So I went to my
Speaker 1: GP and he said, it's definitely allergies, and he gave
Speaker 1: me some medicine, and about a week later I went
Speaker 1: back and it hadn't subsided, and he tried another medication.
Speaker 1: At one point, the coughs were bad enough I actually
Speaker 1: cracked a rib. I mean, that's how violent were and
Speaker 1: I could not suppress it, so it became worrisome. But
Speaker 1: they did chest x rays and they said nothing looks off,
Speaker 1: and over about a month and a half or so,
Speaker 1: it started to taper off on its own. So to
Speaker 1: your point, I just forgot about it and I went
Speaker 1: back to working out. Everything seemed fine.
Speaker 4: He didn't like to.
Speaker 3: Talk about it and dwell on it. He wanted to
Speaker 3: really just keep going business as.
Speaker 4: Usual, though they would come and go. Erratic symptoms began
Speaker 4: to plant seeds of doubt in Scott's mind. After ignoring them,
Speaker 4: for another year and a half. New manifestations became impossible
Speaker 4: to overlook.
Speaker 1: The symptoms that really got me that I couldn't understand
Speaker 1: were heart related, and it started. I can remember the
Speaker 1: exact night. It was about eleven thirty or so. I
Speaker 1: was going to bed. It was quiet, and all of
Speaker 1: a sudden, in a completely resting state, my heart was racing,
Speaker 1: as if I'd been on a treadmill, and I remember
Speaker 1: sitting up and just gasping for air. It came out
Speaker 1: of nowhere, and then I would feel these just really
Speaker 1: hard beats.
Speaker 4: What did you make of it at the time? Did
Speaker 4: you think it was anxiety?
Speaker 1: That's exactly what I thought. My whole life had been
Speaker 1: prone to overthinking things and being stressed and anxious about work,
Speaker 1: and so I figured that's what it was. And maybe
Speaker 1: i'd been drinking too much coffee. I'll watch that, and
Speaker 1: things seemed to go back to normal.
Speaker 3: He doesn't always react the best to someone confronting him
Speaker 3: with things like that, but I think he really likes
Speaker 3: to make everyone else feel at ease with humor and
Speaker 3: stories and making everything fun, so you know, on the surface,
Speaker 3: going through something like this, he doesn't really want to
Speaker 3: talk about it a whole lot.
Speaker 1: But then it started to pick up and it was
Speaker 1: happening again and again. I went in to see my
Speaker 1: doctors and explain what was happening. And what's interesting with
Speaker 1: things like this is the protocol is about a ten
Speaker 1: second EKG. They put all the electros on you, They
Speaker 1: run the EKG for about ten seconds, pull everything off,
Speaker 1: look at it, and they said everything was.
Speaker 4: Great, and you're physically presenting as someone who's an optimal.
Speaker 1: Health, absolutely great shape. They asked a lot of questions
Speaker 1: and I took comfort. That's what I wanted to hear
Speaker 1: was everything was fine. So I went home, but you know,
Speaker 1: your own body, and I started to experience this even
Speaker 1: during the day. I would feel like just out of
Speaker 1: the blue. It's hard to describe, but things would get
Speaker 1: kind of quiet. It was almost like they were cotton
Speaker 1: in your ears. You could hear your heart and it
Speaker 1: would start racing. So I think I went into the
Speaker 1: doctor probably four or five times with those same symptoms.
Speaker 1: And it was interesting because I went and the doctor
Speaker 1: who was going to be performing the test walked in.
Speaker 1: He goes, what are you doing here? And I explained it.
Speaker 1: He goes, you're imperfect health.
Speaker 4: So what was the reaction you were getting.
Speaker 1: The reaction was interesting. At first they were interested, and
Speaker 1: then I wouldn't say annoyed, but I was coming in
Speaker 1: with the same thing and I was getting the same results.
Speaker 1: At one point they gave me some anti anxiety medication
Speaker 1: and that did nothing. But after I mean, I don't
Speaker 1: know if it was four or five six times of
Speaker 1: going in, my doctor came in one day and just said,
Speaker 1: I fear that you're a hypochondriac. And he said it
Speaker 1: directly to me, and I was shocked because I had
Speaker 1: never been more in tune with my body and I
Speaker 1: knew something was off. And I was frustrated and explained
Speaker 1: to him there's something going on. I just know there is.
Speaker 1: And so his response was, if I just throw the
Speaker 1: book at it, if I run every test I can
Speaker 1: think of and they come back negative, promised to not
Speaker 1: come back, that's the deal. And I said, one hundred percent, absolutely,
Speaker 1: let's do it.
Speaker 4: Over the course of two days, Scott underwent a series
Speaker 4: of tests, including real time heart monitoring, multiple blood panels,
Speaker 4: and detailed imaging of his heart. What a strange mental
Speaker 4: challenge that must have been for you, because Normally, when
Speaker 4: people are subjected to that barrage of testing, they're hoping
Speaker 4: that nothing is found, and you're hoping that something is
Speaker 4: found to validate what you've been feeling.
Speaker 1: At this point. That's what I wanted. I didn't want
Speaker 1: to believe I was a hypochondriac, so a large part
Speaker 1: of me did want them to find something, because then
Speaker 1: at least there was a course, there was a path forward.
Speaker 1: Here's what we're going to treat this and to remedy
Speaker 1: this and to fix this. It was Friday afternoon and
Speaker 1: I'm thinking, I'm going to go home and I'm going
Speaker 1: to work out, and I got a phone call from
Speaker 1: a nurse at my doctor's office who said, the doctors
Speaker 1: have seen some things in the tests that are concerning
Speaker 1: to them, is what she said, and they'd like to
Speaker 1: see you Monday morning. And I remember hanging up and
Speaker 1: being so frustrated because now I have the whole weekend
Speaker 1: to overthink this. They found something, and now.
Speaker 4: I got away, and to say to hear that on
Speaker 4: a Friday is not ideal.
Speaker 1: It wasn't well.
Speaker 4: Scott's concerns that something was wrong were being validated. The
Speaker 4: lack of information going into the weekend added to a stress,
Speaker 4: but Scott wouldn't make it to Monday without answers.
Speaker 1: Saturday, my wife and I went over to my mother
Speaker 1: in law's house. I just remember that feeling came over
Speaker 1: me where I felt like my head was packed with cotton.
Speaker 1: I couldn't really hear them anymore, and I got numb,
Speaker 1: starting with my face. I remember my lips started to
Speaker 1: tingle and my arms got numb. So I sat down
Speaker 1: because I was afraid I was going to pass out.
Speaker 1: And all I could think was something's wrong, something is
Speaker 1: very wrong, and I couldn't say it. I couldn't get
Speaker 1: the words out.
Speaker 4: Oh my gosh. So it's almost like those trapped nightmares
Speaker 4: where you can't even scream to wake yourself up.
Speaker 1: It's exactly what it was. And I'm sitting on this
Speaker 1: couch and I can see the two of them talking
Speaker 1: and I don't know if I made a noise or what,
Speaker 1: but I remember my mother in law looking at me
Speaker 1: and she was like, my god, you're pale as a ghost.
Speaker 1: And at that point there was no question. They just
Speaker 1: got me to the car and my wife drove me
Speaker 1: to the hospital, and the minute we went in, they
Speaker 1: dropped me into a wheelchair and rushed me back. So
Speaker 1: my wife had mentioned there's something wrong with his heart.
Speaker 1: And when they brought me into triage, I mean the
Speaker 1: minute they put the connections on me, for the monitors,
Speaker 1: all help broke loose, every alarm went off, and there
Speaker 1: was just this panic. And for the remainder of that day,
Speaker 1: in that evening, it was just a constant back and
Speaker 1: forth with doctors and nurses running in. They would run in,
Speaker 1: tell me to take deep breaths, try to relax, and
Speaker 1: it's not easy to do when this is happening. And
Speaker 1: I finally was able to talk and interact again, and
Speaker 1: I asked a nurse what is going on? And she said,
Speaker 1: your heart is in VT and we can't figure out why.
Speaker 1: So I was in partricular tachycardia and she said, the
Speaker 1: bottom of your heart is beating so fast it is
Speaker 1: not getting enough blood to your body.
Speaker 4: Ventricular tachycardia is a serious condition where the heart beats
Speaker 4: abnormally fast, starting in the lower chambers. If left untreated,
Speaker 4: it can lead to fainting, heart failure, or even sudden
Speaker 4: cardiac arrest. How did you not die?
Speaker 1: One of my doctors feels that I was equal parts
Speaker 1: lucky and also because I had been working out so hard.
Speaker 1: He feels that my heart was just strong enough. It
Speaker 1: was barely getting me by. And in hindsight, leading up
Speaker 1: to this, I can remember trips we took as a family.
Speaker 1: I was walking around the beach, not feeling well, driving
Speaker 1: all these times this is happening, not realizing my heart
Speaker 1: was slipping into VT.
Speaker 4: At this point, Scott was on the brink in with
Speaker 4: seemingly random symptoms now leading to ventricular tachycardia. The physical
Speaker 4: struggle was clear that the mental toll was just beginning
Speaker 4: to surface.
Speaker 1: I laid in bed that night and it's like, I've
Speaker 1: got a family with young kids who you know, my
Speaker 1: daughter would remember me, my son maybe a bit. I've
Speaker 1: got a career like I can't afford to pay my
Speaker 1: bills if I'm not working. Rebecca had just come on. She's,
Speaker 1: you know, a brand new partner to me, and I'm
Speaker 1: texting people like I'm not going to be at work
Speaker 1: for a while. It's not looking good. Some things are happening.
Speaker 1: And trying to process all of this.
Speaker 4: In terms of concerns for his health or longevity. Do
Speaker 4: you remember Scott ever voicing his fears about the.
Speaker 3: Future, absolutely, because there were ups and downs for a
Speaker 3: very very long time. So I mean he was definitely
Speaker 3: concerned about the future and if he was going to
Speaker 3: be a part of it, which I think is something
Speaker 3: that was very difficult for him to wrap his mind
Speaker 3: around and live with every day. I mean, how do
Speaker 3: you live with not knowing? It's not like the doctors
Speaker 3: could say you have X number of years. They just
Speaker 3: didn't know, And how do you process that and live
Speaker 3: with that and go on with your life not knowing.
Speaker 4: We'll be right back with Symptomatic a Medical Mystery Podcast.
Speaker 4: Now back to Symptomatic a Medical Mystery Podcast. At forty,
Speaker 4: Scott was in peak physical shape. Then a small bump
Speaker 4: on his nose led to a surprising sarcoidosis diagnosis. Doctors
Speaker 4: reassured him it was nothing serious, but his symptoms, including
Speaker 4: a racing heart, persisted. Scott's concerns grew confident there was
Speaker 4: more to the story. Scott pushed for more tests. Then
Speaker 4: came a terrifying episode. Suddenly unable to speak or move,
Speaker 4: he faced a life threatening heart condition.
Speaker 1: And then as we got into the wee hours of the night,
Speaker 1: I couldn't sleep fewer doctors and nurses were coming in.
Speaker 1: They were starting to get it under control, and it
Speaker 1: was about eight in the morning when cardiologists came in.
Speaker 1: It was almost like a movie. He came in and
Speaker 1: as he was reading my chart, he would bounce on
Speaker 1: his toes, up and down on his toes, and then
Speaker 1: about every fourth time he would click.
Speaker 4: His heels and the Wizard of Oz.
Speaker 1: It was unsettling, but I'm just like, get to it.
Speaker 1: What is this? And he just kept bouncing and then
Speaker 1: he put the chart behind his back and looked at
Speaker 1: me and said, we may be looking at a transplant.
Speaker 4: The news was a lot to take in, hard to
Speaker 4: even process, but Scott wasn't about to accept that without
Speaker 4: seeking a second opinion.
Speaker 1: Another doctor came in and said, we've got tricks up
Speaker 1: our sleeves and we're going to get to the bottom
Speaker 1: of this. So they transferred me to another hospital in
Speaker 1: Virginia and Nova Fairfax, which has got a great cardiologist
Speaker 1: department and is known for dealing with severe heart issues.
Speaker 1: I was given a very long MRI. I remember it
Speaker 1: taking forever. It just kept going and going and going,
Speaker 1: and then being brought back to my room and a
Speaker 1: doctor came in and she said, we've figured out what's
Speaker 1: happening is you have cardiacs arquidosis. And that's when my
Speaker 1: brain reeled back and I was like, my god, we
Speaker 1: knew all along, and we somehow all dropped the ball
Speaker 1: on this.
Speaker 4: The most insidious of medical mysteries because it was solved
Speaker 4: in the beginning.
Speaker 1: It was solved in the beginning and then forgotten because
Speaker 1: nobody gets this, and especially a forty year old guy
Speaker 1: who's working out, and everybody thought it would resolve itself.
Speaker 4: And so it's allowed to progress under your radar, under
Speaker 4: medical radar, until it arrives at the worst possible manifestation
Speaker 4: of the condition.
Speaker 1: Yeah, and by then it was in my lungs, my spleen,
Speaker 1: my liver, and my heart.
Speaker 4: Doctor Mitchell Sotka is the chief of heart Failure and
Speaker 4: transplant at a Nova Shaw Heart and Vascular in Falls Church, Virginia,
Speaker 4: the expert Scott would later turn to in his journey.
Speaker 4: Doctor Sotka breaks down the rarity of cardiac sarcoidosis.
Speaker 2: For us, it is a relatively rare disease and one
Speaker 2: that many people are not comfortable managing, even cardiologists, even
Speaker 2: many heartfare specialist cardiologists.
Speaker 4: Just taking a little step back, could you define for
Speaker 4: the listener what sarcardosis is and also explain why it's
Speaker 4: so challenging to treat.
Speaker 2: Sure so, sarcoidosis as a broad condition is probably an
Speaker 2: inflammatory condition that is autoimmune, meaning it is your body
Speaker 2: fighting against itself or attacking itself. But what happens is
Speaker 2: it is inflammation caused by your immune system attacking your body.
Speaker 2: And this disease can occur in quite literally any part
Speaker 2: of the body and is most common in the lungs,
Speaker 2: but can also happen more infrequently in the heart. This
Speaker 2: inflammation that is part of the disease can come and
Speaker 2: go and in many cases is not very injurious and
Speaker 2: can be watched pretty conservatively. For whatever reason, when it
Speaker 2: happens in the heart, it tends to be much more
Speaker 2: aggressive and tends to cause persistent inflammation that then leads
Speaker 2: to scar or permanent damage in the heart, and this
Speaker 2: can be associated with a number of problems this can
Speaker 2: cause in the heart, heart rhythm problems that can be deadly.
Speaker 2: It can cause the heart muscle not to do its
Speaker 2: primary job, which is to pump blood very well and
Speaker 2: cause something called heart failure, and it can cause another
Speaker 2: rhythm problem, which is called heart block, where the heart
Speaker 2: does not receive the signals it needs to know and
Speaker 2: to pump or to beat, and can actually just stop beating.
Speaker 4: Sarcotis has never came up from the time you had
Speaker 4: the bump to the time you were getting EKGs.
Speaker 1: Correct, and I take responsibility for some of that. I
Speaker 1: think hearing the word cancer and then hearing this word
Speaker 1: sarcoidosis were things I didn't want to think about, so
Speaker 1: I just kind of pushed those in the back of
Speaker 1: my head and thought, I don't have to worry about those.
Speaker 1: Something else is happening. So it never even crossed my mind.
Speaker 1: And during all of those doctor's appointments, no one ever said, Hey,
Speaker 1: this isn't here, we should take a look at this.
Speaker 1: I think, like I said, the numbers are so rare.
Speaker 1: There are very few doctors in the world that have
Speaker 1: experience with it. There are very few specialists.
Speaker 2: We know that many people, even with sarcotis of the heart,
Speaker 2: never really knew that they had it until something really
Speaker 2: bad happens. In fact, the most common preason of patients'
Speaker 2: first association with the medical system due to sarcoidosis. If
Speaker 2: they have it in their heart is of suddenly dying,
Speaker 2: and this is often from one of these heart rhythm
Speaker 2: problems called ventricular attachycardia.
Speaker 4: Scott was incredibly lucky to survive his VT episode, something
Speaker 4: often fatal for those with cardiac sarcoidosis. Now recognizing the
Speaker 4: clues that had been there all along and understanding the
Speaker 4: severity of his condition, he realized his heart remained far
Speaker 4: from stable after all distress and flare ups. The next
Speaker 4: step was to insert a defibrillator, a device that will
Speaker 4: literally shock his heart to a higher rate during an arrhythmia,
Speaker 4: then slow it back to a normal pulse. I think
Speaker 4: that there has to be in your case, particularly such
Speaker 4: disbelief because you were so healthy, you were trying so
Speaker 4: hard to do all the right things to achieve longevity.
Speaker 4: Were you angry? I was.
Speaker 1: I went through all of the feelings, just depression, the anger,
Speaker 1: why me, the embarrassment to be honest with you, and
Speaker 1: no clear cut path. I asked every doctor like, what's
Speaker 1: the prognosis? And they wouldn't give me one because they couldn't.
Speaker 4: As he lay in bed alone at night in the
Speaker 4: er Fearing what might come, Scott's creative instincts took over.
Speaker 1: The only way I could deal with it is to
Speaker 1: do what I do every day, which is right. And
Speaker 1: so I wrote some really powerful letters.
Speaker 4: To my kids I can't even imagine.
Speaker 1: Which they've never read. Really, and my fear was this
Speaker 1: doesn't go well. There are going to be those kids
Speaker 1: that grow up saying, oh, yeah, my dad died when
Speaker 1: I was really young, and I didn't want that, and
Speaker 1: so I wrote each of them an exhaustive letter. It
Speaker 1: was basically an apology, but just wanted them to know
Speaker 1: who I was. And that was the last thing I
Speaker 1: could do that night. And I remember putting my computer
Speaker 1: down because I had asked to have it with me.
Speaker 1: I always had my computer, and I didn't sleep, and
Speaker 1: I couldn't tell you how I process things because I
Speaker 1: don't think I was at that point.
Speaker 4: With a defibrillator now in place, workouts were off limits,
Speaker 4: and an uneasy fear of being shocked loomed over. Scott
Speaker 4: restless at home. Recovery was taking a toll. Despite doctors' orders,
Speaker 4: he pushed to return to work, hoping to re engage
Speaker 4: with the world. How difficult was it to watch him
Speaker 4: navigating his health challenges.
Speaker 3: At times it's extremely difficult, but at other times I
Speaker 3: almost forget, which I feel bad about because he's so
Speaker 3: good at masking it and just powering on and being
Speaker 3: business as usual. There have been many times I try
Speaker 3: my best to understand, but knowing full well, I can't
Speaker 3: fully understand. So I just try to give him as
Speaker 3: much professional support and support as a friend that I
Speaker 3: possibly can.
Speaker 1: There was one day I was in a meeting and
Speaker 1: I started to feel and I'm pretty sure it was
Speaker 1: the VT, just short little bursts and I wasn't being shocked,
Speaker 1: but something was happening. And I went back to my
Speaker 1: office and she walked in and she said, you don't
Speaker 1: look like you're feeling well. And she would say, like,
Speaker 1: you've got to go, you need to go home.
Speaker 4: Do you remember how it was manifesting itself physically on him.
Speaker 3: It was everything, It was his body language. He was pale.
Speaker 3: As soon as I walked in the office and actually
Speaker 3: took a moment to look at him. I knew in
Speaker 3: a second something very bad was happening, you know, And
Speaker 3: I knew at that point it was going to take
Speaker 3: a lot for him to do something about it. I said,
Speaker 3: we will leave right now. I will go pull my
Speaker 3: car up and I will drive you to the hospital.
Speaker 3: Like I just had this overwhelming feeling that things were
Speaker 3: not okay at all, and you were right Unfortunately.
Speaker 1: I said, I got to get out of this office.
Speaker 1: So she walked with me and there were some backsteps
Speaker 1: back exit by the garage, and I just wanted to
Speaker 1: sit out there, and she sat with me and waited
Speaker 1: for my wife to come. And it was equal parts
Speaker 1: comforting having somebody there, but also I just wanted to
Speaker 1: be alone, because again, it was just that's the only
Speaker 1: way I can put it. Was embarrassing and it was frustrating.
Speaker 1: So we got home and I'll never forget my son
Speaker 1: was at the table in his little hicher and he
Speaker 1: was eating He's four years old. And I did not
Speaker 1: feel well, and I walked into the kitchen and out
Speaker 1: of the blue, my device fired and I won't say
Speaker 1: what I said, and I yelled it and my son
Speaker 1: learned a new word. I mean, it just came out
Speaker 1: of nowhere and dropped me to the floor. And I've
Speaker 1: even had doctors ask me what does it feel like
Speaker 1: for your device to fire? And the only way I
Speaker 1: could put it was imagine a horse with electrified shoes
Speaker 1: kicking you right in the chest. Your eyes flashway, your
Speaker 1: ears crack, and I mean it is like getting punched
Speaker 1: as hard as you can in the chest.
Speaker 4: Paramedics arrived, quickly, distracting his son to shield him from
Speaker 4: the harsh reality of his father's condition, and rush to
Speaker 4: stabilize Scott.
Speaker 1: They're wiring me up and cutting my shirt off and
Speaker 1: getting me on a gurney and getting me out of there,
Speaker 1: and you know, you've got an ambulance sirens going, and
Speaker 1: it was frightening. And I got to the hospital and
Speaker 1: they had me on monitors and I think the scariest
Speaker 1: thing I've ever heard was the doctor at Hopkins, who
Speaker 1: could see everything he was watching on their monitors, and
Speaker 1: he was on speakerphone, said he is not stable enough
Speaker 1: to move. Cancel the life light. And that was the
Speaker 1: moment I was like, this is it. This is where
Speaker 1: I go. I'm in the ICU and they can't stop this.
Speaker 1: They came in and they put in my IV. They
Speaker 1: started to drip an insane amount of a drug called
Speaker 1: amiotor room, which is for heart arrhythmias, and all day
Speaker 1: and all night, just nurses coming in and checking on
Speaker 1: me and making sure my meds were in.
Speaker 4: Scott's worst fears came to life when his device fired. Thankfully,
Speaker 4: doctor stabilized him with a cardiac ablation, a procedure that
Speaker 4: kills small areas of the heart tissue that are causing
Speaker 4: irregular heart beats. It was enough to get him back home,
Speaker 4: where he began to take high doses of predmozone hoping
Speaker 4: to avoid another cardiac episode.
Speaker 1: And at one point they had me at forty milligrams
Speaker 1: a day, which you feel like you're going crazy. You're
Speaker 1: in fight or flight mode. So my cardiologist left, moved
Speaker 1: out of state, and the rest of the practice had
Speaker 1: no experience. My device only fired one more time. It
Speaker 1: was about a year later, and I was on the
Speaker 1: treadmill and suddenly I felt funny and that was a burst,
Speaker 1: and then it lit me up. So I had my
Speaker 1: second ablation surgery. And that practice it felt like just
Speaker 1: a shrug, like we don't know what else we can
Speaker 1: do for you. And that's when my pulmonologists introduced me
Speaker 1: to doctor Sukka, who he said, do you really need
Speaker 1: to go see him? And he spent about forty five
Speaker 1: minutes with me, just talking to me and asking me
Speaker 1: questions and wanted to really fully understand everything that had
Speaker 1: happened and how I arrived at his door. And when
Speaker 1: we were done, he said, I will treat you, but
Speaker 1: I will go at this aggressively, and I need you
Speaker 1: to understand that if you're willing to go with me
Speaker 1: on this journey, I will treat you. And he said,
Speaker 1: one of the first things I want to do is
Speaker 1: I want to get you off a pregtizone. At the time,
Speaker 1: I think I was at twenty five milligrams a day.
Speaker 2: I do remember meeting him the first time. He was
Speaker 2: referred to me by another physician very appropriately to help
Speaker 2: out with his case, which was complicated and he had
Speaker 2: struggled with his disease for a long time, and I
Speaker 2: remember he was in the room and clearly struggling with
Speaker 2: the diagnosis and the treatments and where to go next.
Speaker 2: I remember him being very excited when I said to him,
Speaker 2: I think I have something that we can do differently.
Speaker 2: And it was not just me, it was a team
Speaker 2: of people that could get together and really offer him
Speaker 2: a different treatment course that I think would be much
Speaker 2: more palatable for him and put him in a better
Speaker 2: place symptomatically and with his disease.
Speaker 4: You mentioned that he was a challenging case, what in
Speaker 4: particular presented challenges for you?
Speaker 2: So I think in his case, as I mentioned, heart
Speaker 2: sarcoidosis can be particularly refractory to treatment over time, and
Speaker 2: in his case, that is what a lot of his
Speaker 2: other physicians had been struggling with, is that every time
Speaker 2: they tried to reduce his dosing of immuna suppression, he
Speaker 2: had recurrence of his sarcodosis of his heart. And this
Speaker 2: was symptomatic, meaning he felt pretty terrible and also it
Speaker 2: wasangerous in that he was having these abnormal heart rhythms.
Speaker 2: So his clinical team before he got to us really
Speaker 2: didn't know how to handle that, didn't know how to
Speaker 2: adjust his immune suppression therapy and regimen to get him
Speaker 2: onto alternative agents that wouldn't have so many side effects.
Speaker 4: Doctor Sotka's first goal was to gradually reduce Scott's preadnizone
Speaker 4: due to its severe side effects including weight gain, mood swings,
Speaker 4: and high blood pressure. However, attempts to taper off were
Speaker 4: challenging as infections took over his weekend immune.
Speaker 2: System, and I think it really took us years to
Speaker 2: get to the place where I felt like we had
Speaker 2: gotten him where I said, I was going to try
Speaker 2: to get him to a place where he was on
Speaker 2: a regiment that did not cause him a lot of
Speaker 2: side effects, where he felt better, where he could exercise more,
Speaker 2: and where I felt like the long term outlook for
Speaker 2: him was very good as opposed to be more uncertain.
Speaker 1: He said, if we can get you to where it's
Speaker 1: not showing up on pet scans, then we know the
Speaker 1: medications are working. And that's where I've been for a
Speaker 1: number of years now. So I'm kind of in maintenance mode.
Speaker 4: After years of searching for a diagnosis and navigating near
Speaker 4: death experiences, Scott was still grappling with the anxiety attached
Speaker 4: to the very device that keeps him alive.
Speaker 1: It's taken me a long time to mentally get back
Speaker 1: to where I feel like I'm kind of myself again.
Speaker 1: For me, there was PTSD from my device firing. There
Speaker 1: were nights I couldn't sleep because I was so for
Speaker 1: any little thing in my chest. I felt like, here
Speaker 1: it comes, and I would brace and it was a
Speaker 1: terrible place to be and seeking out people I could
Speaker 1: speak to to get through that made a huge difference,
Speaker 1: and then being able to get back to my nine
Speaker 1: to five where it's just like I wake up and
Speaker 1: I've got a job to do, and I when I'm
Speaker 1: done with work, I've got my kids and my dogs
Speaker 1: and you know, my motorcycle. Like I'm just trying to
Speaker 1: normal life.
Speaker 2: His mental fortitude, as you mentioned, despite all the shocks
Speaker 2: that he had had and the anxiety that that can
Speaker 2: produce and the complicated path, was really down to him
Speaker 2: mentally being strong enough to get through this process. But
Speaker 2: I hope that we helped him get there along the way.
Speaker 4: In terms of your milestones, how many of you blown
Speaker 4: away at this point?
Speaker 1: So it was one year and they said, if we
Speaker 1: can get you to a year, we believe we'll get
Speaker 1: you to three. If we get you to three, you're
Speaker 1: going to ten. Get past ten, and you should expect
Speaker 1: to live a fairly normal lifespan. And so for me,
Speaker 1: that was my goal is I got to get to ten.
Speaker 1: And twenty twenty two was eleven.
Speaker 4: With his symptoms finally under control, Scott decided to take
Speaker 4: a chance with Rebecca and start their own advertising agency,
Speaker 4: The Creative Cartel. Now he's working on a memoir to
Speaker 4: share his journey in the industry and his fight with
Speaker 4: the disease. But there's one part of his story that
Speaker 4: matters most his kids.
Speaker 1: The cool thing about my kids is that they don't
Speaker 1: look at me as being sick. They've kind of put
Speaker 1: it in terms for me, and I think in a
Speaker 1: way they sensed I needed to hear it, that I
Speaker 1: beat it, I conquered it, and I was strong enough
Speaker 1: to get through it. I remember my son saying, you're
Speaker 1: kind of like Iron Man. Now, that was the way
Speaker 1: he looked at it. But hearing them talk about it
Speaker 1: in a very positive way and that I'm a success
Speaker 1: is great. My daughter's even said, like, the things you've
Speaker 1: gotten through and your work ethic is so apparent that
Speaker 1: it's inspiring to them.
Speaker 4: What do you hope that people take away from Scott's story.
Speaker 3: I think how you deal with something that comes your way,
Speaker 3: even if it's just the worst possible situation and not
Speaker 3: fair and not deserve. You know, you've gone through so much,
Speaker 3: how you come out on the other end of it
Speaker 3: is up to you. You can navigate that to some extent.
Speaker 3: Is how you think about it and how you move
Speaker 3: forward and the attitude you take on, and that can
Speaker 3: have a profound impact on your health and your well being.
Speaker 1: I hate to sound too optimistic, because I was at
Speaker 1: a point in my life where I wasn't and can
Speaker 1: be very understanding of how frustrating and scary that is.
Speaker 1: You can't be defined by a condition. You have to
Speaker 1: take it back. Last year, I took a motorcycle trip
Speaker 1: from northern Virginia to Kansas to go speak at my
Speaker 1: high school. I'm doing everything I can to take me
Speaker 1: back because that's what we all deserve. I think we
Speaker 1: all have to have that part of ourselves.
Speaker 4: You can find out more about sar coidosis and cardiac
Speaker 4: sar coidosis in particular on the Foundation for sar Codosis
Speaker 4: Research website at Stop Sarkoidosis dot org.
Speaker 1: My name is Scott Colin, and for thirteen years I've
Speaker 1: been in and out of hospitals battling life threatening complications
Speaker 1: brought on by a rare disease called sarcoidosis.
Speaker 4: On next week's episode of Symptomatic Mela Clark was a
Speaker 4: busy crisis communications professional working in a fast paced, high
Speaker 4: pressure environment. The constant stress made it hard for her
Speaker 4: to notice the symptoms creeping in, at first feeling tired
Speaker 4: and thirsty, then escalating to full on exhaustion and rapid
Speaker 4: weight loss, until things took a more serious turn.
Speaker 5: I was making myself breakfast and I fainted and I
Speaker 5: kind of like came to I woke up. I was
Speaker 5: really confused, and I was like, I don't know what
Speaker 5: just happened, but I know that's not normal. And I
Speaker 5: just started bawling because I was so scared and frustrated.
Speaker 4: Diligently working to combat her symptoms. Mela's diagnosis post complications
Speaker 4: even her doctors didn't see coming. As always, we would
Speaker 4: love to hear from you. Send us your thoughts on
Speaker 4: this episode or share a medical mystery of your own
Speaker 4: at Symptomatic at iHeartMedia dot com, and please rate and
Speaker 4: review Symptomatic wherever you get your podcasts. We'll see you
Speaker 4: next time. Until then, be well. Symptomatic is a production
Speaker 4: of Ruby Studio from iHeartMedia. Our show is hosted by
Speaker 4: me Lauren Bret Pacheco. Executive producers are Matt Ramano and myself.
Speaker 4: Our EP of post production is James Foster. Our supervising
Speaker 4: producer is Cierra Kaiser. Our writers are John Erwin and
Speaker 4: Diana Davis, and our editor is Cierra Spreen.