Case #21: Scott

Summary

Symptomatic: Case #21 – Scott's Battle with a Hidden Heart Condition

Podcast: Symptomatic: A Medical Mystery Podcast
Host: Lauren Wright Pacheco
Episode: Case #21: Scott
Release Date: November 5, 2024

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Introduction

In this gripping episode of Symptomatic: A Medical Mystery Podcast, host Lauren Wright Pacheco delves into the harrowing journey of Scott Collins, a vibrant advertising professional whose life took an unexpected turn when he was diagnosed with a rare heart condition called cardiac sarcoidosis. This episode intricately explores Scott's struggle for an accurate diagnosis, the impact on his personal and professional life, and his relentless fight to regain his health.

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Scott's Background

Scott Collins is portrayed as a dynamic individual with a passion for motorcycles and tattoos, juxtaposed by his role as a devoted family man. Despite his outgoing personality and success in the advertising industry, Scott's life is overshadowed by a mysterious and debilitating illness.

Lauren Wright Pacheco introduces Scott:
"Tattoos and love for motorcycles might suggest a tough exterior, but beneath that, he's a warm and devoted family man. His big personality lights up any room." (00:53)

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Initial Symptoms and Misdiagnoses

Scott's medical journey began innocuously with a small bump on his nose, which led to a surprising diagnosis of sarcoidosis—a condition Scott initially dismissed. Believing his symptoms were mere acne, he ignored the persistent bump until a concerned doctor suggested a biopsy.

Scott Collins recounts:
"When they brought me into triage, the minute they put the connections on me for the monitors, all hell broke loose. Every alarm went off and there was just this panic." (00:09)

Despite the anxiety-inducing diagnosis, the doctors assured Scott that sarcoidosis was rare and often resolves on its own, prompting him to set aside his fears.

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The Critical Episode in Triage

A year after the initial diagnosis, Scott experienced severe heart-related symptoms, culminating in a life-threatening episode of ventricular tachycardia (VT). This sudden event was a wake-up call, revealing the severity of his condition.

Scott Collins describes the moment:
"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... I remember sitting up and just gasping for air." (09:11)

Despite numerous medical consultations and tests, Scott faced skepticism from his doctors, who initially labeled him a hypochondriac, further complicating his quest for answers.

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Diagnosis and Understanding Sarcoidosis

It wasn't until Scott sought a second opinion at Inova Fairfax Hospital that his condition was correctly identified as cardiac sarcoidosis. Dr. Mitchell Satka, the chief of heart failure and transplant at Inova Shaw Heart and Vascular, explained the complexities of the disease.

Dr. Mitchell Satka elaborates:
"Sarcoidosis is an inflammatory condition that is autoimmune, meaning it is your body fighting against itself... When it happens in the heart, it tends to be much more aggressive and tends to cause persistent inflammation that then leads to scar or permanent damage in the heart." (21:38)

This revelation highlighted the insidious nature of Scott's condition, which had been silently progressing despite his outward appearance of health.

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Treatment Journey

Scott's treatment journey was fraught with challenges. Initial treatments with prednisone provided temporary relief but brought severe side effects, including mood swings and a compromised immune system. His cardiologist recommended aggressive treatment to manage the cardiac involvement of sarcoidosis, leading to the implantation of a defibrillator to prevent fatal arrhythmias.

Scott Collins reflects on his mental state:
"It was a terrifying place to be. I wrote some really powerful letters to my kids... I had to process everything without being able to talk about it." (25:08)

Dr. Satka and his team tailored a treatment plan aimed at reducing Scott's reliance on prednisone while managing his heart condition more effectively.

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Personal Insights and Reflections

Throughout his ordeal, Scott grappled with immense psychological stress, including PTSD from the defibrillator shocks and anxiety over his uncertain prognosis. His partner, Rebecca, played a pivotal role in supporting him, highlighting the importance of a strong support system during medical crises.

Rebecca shares:
"He was definitely concerned about the future and if he was going to be a part of it." (00:32)
"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." (26:16)

Scott's resilience is further exemplified by his return to work and his entrepreneurial venture, despite the limitations imposed by his condition.

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Conclusion

Scott Collins' story is a testament to human resilience and the relentless pursuit of answers in the face of medical adversity. His journey underscores the complexities of diagnosing rare diseases and the profound impact they can have on one's life. Through unwavering determination and the support of dedicated medical professionals, Scott has managed to regain control over his health and personal life.

Scott Collins concludes with a message of hope:
"You can't be defined by a condition. You have to take it back." (36:24)

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Key Takeaways

• Rare Conditions Require Vigilance: Scott's case highlights the importance of persistent advocacy for one's health, especially when dealing with rare and poorly understood conditions like cardiac sarcoidosis.

• Support Systems are Crucial: The unwavering support from Rebecca was instrumental in Scott's journey, emphasizing the role of family and friends in managing chronic illnesses.

• Mental Health Matters: The psychological toll of battling a chronic disease is significant, underscoring the need for comprehensive care that addresses both physical and mental health.

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Additional Resources

For more information on sarcoidosis and cardiac sarcoidosis, visit the Foundation for Sarcoidosis Research.

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Listen to this episode of Symptomatic to uncover more of Scott’s journey and gain deeper insights into the challenges of living with a rare medical condition.

Transcript

[Scott Collins]

When they brought me into triage, the minute they put the connections on me for the monitors, all hell 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 can't figure out why.

[Dr. Mitchell Satka]

Many people never really knew that they had it until something really bad happens.

[Rebecca]

He was definitely concerned about the future and if he was going to be a part of it.

[Scott Collins]

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.

[Lauren Wright Pacheco]

How terrifying would it be to fight an unknown enemy, one you didn't recognize and didn't see 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. These are their stories. I'm Lauren Wright Pacheco, and this is symptomatic Scott Collins. Tattoos and love for motorcycles might 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 your dream place to be and what would you be doing? What do you love?

[Scott Collins]

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. Bernese Mountain dogs.

[Lauren Wright Pacheco]

And you're in advertising?

[Scott Collins]

In advertising. My business partner and I have been together for as a team for 14 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 is okay because we're doing it for ourselves.

[Lauren Wright Pacheco]

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 characteristics that Scott has that you appreciate, what would they be?

[Rebecca]

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 people to succeed.

[Scott Collins]

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

[Lauren Wright Pacheco]

And she actually has been in the foxhole with you in terms of your health challenges.

[Scott Collins]

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 go.

[Lauren Wright Pacheco]

Which coincided with a major milestone for Scott turning the big four zero. He decided to use this landmark as inspiration to get into peak physical shape.

[Scott Collins]

Growing up, I remember my mom making people cakes with a foot in the grave and all black. And it was like 40 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 health food. It was great. And everything was going just as planned. I was feeling my best.

[Lauren Wright Pacheco]

And you were doing P90X, which is. That is not for the weak at heart.

[Scott Collins]

It's not. And it promises change in 90 days. And it did. I mean, I've got a photo my wife took of me with my kids on the beach right around the time I had finished the first 90 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.

[Lauren Wright Pacheco]

And then it took something visual, something physically visual for you to go to the doctor?

[Scott Collins]

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 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 be cancer just off the cuff, which you know is not what you're expecting.

[Lauren Wright Pacheco]

And you hear the word, that's 0 to 150.

[Scott Collins]

0 to 150. 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 send a postcard that didn't call. So I made an appointment and went in. And he 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.

[Lauren Wright Pacheco]

Sarcoidosis 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.

[Scott Collins]

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. And of course, I did.

[Lauren Wright Pacheco]

You immediately went on, I did, and.

[Scott Collins]

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.

[Lauren Wright Pacheco]

So the bump went away, and so did your thoughts about sarcoidosis?

[Scott Collins]

It did.

[Lauren Wright Pacheco]

Scott easily immersed himself back into his work. However, a year later, a persistent cough.

[Scott Collins]

Sparked new concerns and wasn't an allergy type cough wasn't 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.

[Lauren Wright Pacheco]

Did you think allergies?

[Scott Collins]

Did you think I'd never felt it? I grew up with allergies, I grew up with asthma and it was nothing like I'd 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 we were and I could not suppress it, so it became worrisome. But they did chest X rays and they said nothing looks off and over. In 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.

[Rebecca]

He didn't like to talk about it and dwell on it. He wanted to really just keep going, business as usual.

[Lauren Wright Pacheco]

Though they would come and go, the sporadic 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.

[Scott Collins]

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 11:30 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 hard beats.

[Lauren Wright Pacheco]

What did you make of it at the time? Did you think it was anxiety?

[Scott Collins]

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. Coff I'll watch that and, you know, things seem to go back to normal.

[Rebecca]

He doesn't always react the best to someone confronting him with things like that. 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 talk about it. A whole lot.

[Scott Collins]

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

[Lauren Wright Pacheco]

You'Re physically presenting as someone who's in optimal health.

[Scott Collins]

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 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 and goes, what are you doing here? And I explained, and he goes, you're in perfect health.

[Lauren Wright Pacheco]

So what was the reaction you were getting?

[Scott Collins]

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 antianxiety 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 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, will you promise to not come back? That's the deal. And I said, 100%, absolutely, let's do it.

[Lauren Wright Pacheco]

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 that nothing is found and you're hoping that something is found to validate what you've been feeling at.

[Scott Collins]

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 do 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 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've got to wait.

[Lauren Wright Pacheco]

To hear that on a Friday is not ideal.

[Scott Collins]

It wasn't.

[Lauren Wright Pacheco]

While 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.

[Scott Collins]

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 very wrong. And I couldn't say it. I couldn't get the words out.

[Lauren Wright Pacheco]

Oh my gosh. So it's almost like those trapped nightmares where you can't even scream to wake yourself up.

[Scott Collins]

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. As 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 hell broke loose. Every alarm went off and there was just this panic. And for the remainder of that day and that evening, it. It was just a constant back and forth with doctors and nurses running in, they would run in, 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 ventricular tachycardia. And she said, the bottom of your heart is beating so fast, it's not getting enough blood to your body.

[Lauren Wright Pacheco]

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?

[Scott Collins]

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 was slipping into vt. At this point, Scott.

[Lauren Wright Pacheco]

Was on the brink. Bedridden with seemingly random symptoms now leading to ventricular tachycardia. The physical struggle was clear, but the mental toll was just beginning to surface.

[Scott Collins]

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. And trying to process all of this.

[Lauren Wright Pacheco]

In terms of concerns for his health or longevity. Do you remember Scott ever voicing his fears about the future?

[Rebecca]

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 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?

[Lauren Wright Pacheco]

We'll be right back with Symptomatic, a medical mystery podcast. I'm cyndi Lauper with fellow Cosentyx advocate Chef Michelle Bernstein. We'll share our experiences with plaque psoriasis with psoriatic arthritis and Dr. Panico will.

[Rebecca]

Talk about the possible connection.

[Cyndi Lauper]

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[Lauren Wright Pacheco]

Now back to Symptomatic A Medical Mystery Podcast At 40, Scott was in peak physical shape. Then a small bump on his nose led to a surprising sarcoidosis diagnosis. Doctors reassured him it was nothing serious, but his symptoms, including a racing heart, persisted. Scott 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.

[Scott Collins]

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 8 in the morning when a cardiologist 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 his heels and the wizard of Oz. It was, 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.

[Lauren Wright Pacheco]

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.

[Scott Collins]

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, Inova 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, 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 cardiac sarcoidosis. 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.

[Lauren Wright Pacheco]

The most insidious of medical mysteries, because it was solved in the beginning.

[Scott Collins]

It was solved in the beginning and then forgotten because nobody gets this and especially a 40 year old guy who's working out and everybody thought it would resolve itself.

[Lauren Wright Pacheco]

And so it's allowed to progress under your radar, under medical radar, until it arrives at the worst possible manifestation of the condition.

[Scott Collins]

Yeah. And by then it was in my lungs, my spleen, my liver, and my heart.

[Lauren Wright Pacheco]

Dr. Mitchell Satka is the chief of heart failure and transplant at Inova Shaw Heart and Vascular in Falls Church, Virginia. The expert Scott would later turn to in his journey, Dr. Satka breaks down the rarity of cardiac sarcoidosis.

[Dr. Mitchell Satka]

For us, it is a relatively rare disease and one that many people are not comfortable managing. Even cardiologists, even many heart failure specialist cardiologists.

[Lauren Wright Pacheco]

Just taking a little step back, could you define for the listener what sarcoidosis is and also explain why it's so challenging to treat?

[Dr. Mitchell Satka]

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

[Lauren Wright Pacheco]

Sarcoidosis never came up from the time you had the bump to the time you were getting EKGs.

[Scott Collins]

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, this is in 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.

[Dr. Mitchell Satka]

We know that many people, even with sarcoidosis of the heart, never really knew that they had it until something really bad happens. In fact, the most common presentation of patients first association with the medical system due to sarcoidosis, if they have it in their heart, is of suddenly dying. And this is often from one of these heart rhythm problems called ventricular tachycardia.

[Lauren Wright Pacheco]

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 the stress and flare ups. The next 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. Were you angry?

[Scott Collins]

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.

[Lauren Wright Pacheco]

As he lay in bed alone at night in the er, fearing what might come, Scott's creative instincts took over.

[Scott Collins]

The only way I could deal with it is to do what I do every day, which is write. And so I wrote some really powerful letters to my kids.

[Lauren Wright Pacheco]

I can't even imagine which they've never read really.

[Scott Collins]

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 down because I had asked to have it with me because I always have my computer and I didn't sleep and I couldn't tell you how I processed things because I don't think I was at that point.

[Lauren Wright Pacheco]

With the 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 reengage with the world. How difficult was it to watch him navigating his health challenges?

[Rebecca]

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

[Scott Collins]

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 gotta go, you need to go home.

[Lauren Wright Pacheco]

Do you remember how it was manifesting itself physically on him?

[Rebecca]

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, 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.

[Scott Collins]

I said, I gotta get out of this office. So she walked with me and there were some back steps, 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. It was embarrassing and it was frustrating. So we got home and I'll never forget, my son was at the table on his little high chair 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 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 flash white, your ears crack. And, I mean, it is like getting punched as hard as you can in the chest.

[Lauren Wright Pacheco]

Paramedics arrived quickly, distracting his son to shield him from the harsh reality of his father's condition and rush to stabilize Scott.

[Scott Collins]

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 he was on speakerphone, said, he is not stable enough to move. Cancel the life flight. 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 amiodarone, which is for heart arrhythmias. And all day and all night, just nurses coming in and checking on me and making sure my meds were in.

[Lauren Wright Pacheco]

Scott's worst fears came to life when his device fired. Thankfully, doctors stabilized him with a cardiac ablation, a procedure that kills small areas of the heart tissue that are causing irregular heartbeats. It was enough to get him back home, where he began to take high doses of prednisone, hoping to avoid another cardiac episode.

[Scott Collins]

And at one point, they had me at 40 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, 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 pulmonologist introduced me to Dr. Satka, who he Said, you really need to go see him. And he spent about 45 minutes with me, just talking to me and asking me 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 of prednisone. At the time, I think I was at 25 milligrams a day.

[Dr. Mitchell Satka]

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. 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 place symptomatically and with his disease.

[Lauren Wright Pacheco]

You mentioned that he was a challenging case. What in particular presented challenges for you?

[Dr. Mitchell Satka]

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 immunosuppression, he had recurrence of his sarcoidosis of his heart. And this was symptomatic, meaning he felt pretty terrible. And also it was dangerous 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 immunosuppression therapy and regimen to get him onto alternative agents that wouldn't have so many side effects.

[Lauren Wright Pacheco]

Dr. Satka's first goal was to gradually reduce Scott's prednisone 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 system.

[Dr. Mitchell Satka]

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 regimen. 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 him was very good as opposed to being more uncertain.

[Scott Collins]

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.

[Lauren Wright Pacheco]

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.

[Scott Collins]

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. And then being able to get back to my 9 to 5 where it's just like, I wake up and I've got a job to do and when I'm done with work, I've got my kids and my dogs and my, you know, my motorcycle. Like, I'm just trying to normalize the life.

[Dr. Mitchell Satka]

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.

[Lauren Wright Pacheco]

In terms of your milestones, how many of you blown away at this point?

[Scott Collins]

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 10, get past 10 and you should expect to live a fairly normal lifespan. And so for me, that was my goal, is I gotta get to 10. And 20. 22 was 11.

[Lauren Wright Pacheco]

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.

[Scott Collins]

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

[Lauren Wright Pacheco]

What do you hope that people take away from Scott's story?

[Rebecca]

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 deserved, 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 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.

[Scott Collins]

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 back because that's what we all deserve. I think we all have to have that part of ourselves.

[Lauren Wright Pacheco]

You can find out more about sarcoidosis and cardiac sarcoidosis in particular on the foundation for Sarcoidosis research [e-mail] My name.

[Scott Collins]

Is Scott Collin and for 13 years I've been in and out of hospitals battling life threatening complications brought on by a rare disease called sarcoidosis.

[Lauren Wright Pacheco]

On next week's episode of Symptomatic, Mila 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 as escalating to full on exhaustion and rapid weight loss until things took a more serious turn.

[Cyndi Lauper]

I was making myself breakfast and I.

[Scott Collins]

Fainted and I kind of like came to. I woke up, I was really confused and I was like, I don't know.

[Lauren Wright Pacheco]

What just happened but I know that's.

[Scott Collins]

Not normal and I just started bawling because I was so scared and frustrated.

[Lauren Wright Pacheco]

Diligently working to combat her symptoms, Mila's diagnosis posed 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@ symptomaticheartmedia.com and please rate and 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 Bright Pacheco. Executive producers are Matt Romano and myself. Our EP of post production is James Foster, our supervising producer is Ciara Kaiser, our writers are John Irwin and Diana Davis and our editor is Ciara Spreen. I'm Cyndi Lauper with fellow Cosentyx advocate Chef Michelle Bernstein. We'll share our experiences with plaque psoriasis with psoriatic arthritis and Dr. Panico will.

[Rebecca]

Talk about the possible connection.

[Cyndi Lauper]

Cosentyx Secukinumab is prescribed for adults with moderate to severe plaque psoriasis 300 milligram dose and adults with active psoriatic arthritis 150 milligrams dose. Don't use if you're allergic to Cosentyx. Before starting, get checked for tb, serious allergic reactions, severe skin reactions that look like eczema and an increased risk of infections, some fatal have occurred. It may lower your ability to fight infections, so tell your doctor if you have an infection or symptoms like fevers, sweats, chills, muscle aches or cough, had a vaccine or plan to, or if IBD symptoms develop or worsen. Learn more at 1844cosentyx or cosentyx.com chefmichelle.