Case #21: Scott

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 can't figure out why.

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

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

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.

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. These are their stories. I Lauren Brete Pacheco and this is symptomatic. Scott Collins tattoos and love for motorcycles might suggest a tough exterior, but beneath that, he's a warm

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.

And you're in advertising.

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.

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.

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.

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 only incredible, but it was more rewarding because we had a great friendship and it was a lot of fun

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

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.

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.

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 as planned. I was feeling my best.

And you were doing P ninety X, which is that is not for the week at.

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.

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

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

And you hear the word zeroed a hundred, it was.

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 was almost excited and fascinated because he said, I've never

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.

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 you immediately went on.

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.

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

It did.

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

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.

Did you think allergies, did you think?

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

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

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.

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 hard beats.

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

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.

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 talk about it a whole lot.

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.

Great, and you're physically presenting as someone who's an optimal.

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

So what was the reaction you were getting.

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,

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 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

Got away, and I say to hear that on a Friday is not ideal.

It wasn't well.

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.

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.

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

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 my wife had mentioned there's something wrong with his heart.

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?

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 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.

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 in.

Terms of concerns for his health or longevity. Do you remember Scott ever voicing his fears about the.

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 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.

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 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

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.

His heels and the Wizard of Oz.

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.

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.

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, and then being brought back to my room and a doctor came in and she said, we've figured out what's

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

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.

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

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

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.

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

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.

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,

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

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 isn't here, we should take a look at this. I think, like I said, the numbers are so rare.

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, and this is often from one of these heart rhythm problems called ventricular attach ofcardia.

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 step was to insert a defibrillator, a device that will literally shock his heart to a higher rate during an arrhythmia,

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.

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

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.

To my kids I can't even imagine.

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 down because I had asked to have it with me.

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 navigating his health challenges.

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.

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.

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

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.

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 was at the table in his little hicher and he

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

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 light. And that was the

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.

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, 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

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.

You mentioned that he was a challenging case, what in particular presented challenges for you?

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 was symptomatic, meaning he felt pretty terrible and also it wasangerous in that he was having these abnormal heart rhythms.

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.

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 him was very good as opposed to be more uncertain.

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.

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.

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

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.

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

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.

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.

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 in a very positive way and that I'm a success

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

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. 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.

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.

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.

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.

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.

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.

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 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