WEBVTT - Case #21: Scott 0:00:04.400 --> 0:00:12.239 Rube when they brought me into triage. The minute they 0:00:12.240 --> 0:00:14.680 put the connections on me for the monitors, all help 0:00:14.720 --> 0:00:17.119 broke loose. Every alarm went off and there was just 0:00:17.200 --> 0:00:19.959 this panic, and I asked a nurse, like, what is 0:00:20.000 --> 0:00:22.799 going on? And she said, your heart is beating so fast, 0:00:22.880 --> 0:00:24.959 it's not getting enough blood to your body, and we 0:00:24.960 --> 0:00:26.000 can't figure out why. 0:00:26.800 --> 0:00:29.960 Many people never really knew that they had it until 0:00:30.520 --> 0:00:32.200 something really bad happens. 0:00:33.000 --> 0:00:37.040 He was definitely concerned about the future and if he 0:00:37.200 --> 0:00:38.279 was going to be a part of it. 0:00:39.000 --> 0:00:42.280 And my fear was, this doesn't go well, there are 0:00:42.320 --> 0:00:44.000 going to be those kids that grew up saying, oh, yeah, 0:00:44.040 --> 0:00:45.760 my dad died when I was really young, and I 0:00:45.840 --> 0:00:46.519 didn't want that. 0:00:53.920 --> 0:00:57.520 How terrifying would it be to fight an unknown enemy, 0:00:58.040 --> 0:01:01.880 one you didn't recognize and didn't he coming. What if 0:01:01.880 --> 0:01:05.959 that enemy was coming from within a disease that even 0:01:06.120 --> 0:01:11.760 doctors couldn't identify. Nearly half of all Americans suffer from 0:01:11.840 --> 0:01:16.520 some chronic illness, and many struggle for an accurate diagnosis. 0:01:17.600 --> 0:01:24.200 These are their stories. I Lauren Brete Pacheco and this 0:01:24.680 --> 0:01:42.720 is symptomatic. Scott Collins tattoos and love for motorcycles might 0:01:42.840 --> 0:01:46.400 suggest a tough exterior, but beneath that, he's a warm 0:01:46.440 --> 0:01:52.000 and devoted family man. His big personality lights up any room. Confident, approachable, 0:01:52.320 --> 0:01:54.120 and the type of person who can strike up a 0:01:54.160 --> 0:01:58.000 friendship with anyone. Okay, so if we weren't sitting here 0:01:58.080 --> 0:02:01.480 right now, what would be dream place to be and 0:02:01.520 --> 0:02:03.000 what would you be doing? What do you love? 0:02:04.800 --> 0:02:07.640 My kids are growing up, so they're busy a lot now. 0:02:07.680 --> 0:02:11.079 I love to spend time with them. Me personally because 0:02:11.120 --> 0:02:14.520 of my job, because I'm constantly presenting to people and 0:02:14.600 --> 0:02:17.360 talking and in meetings. I just like to be quiet. 0:02:17.720 --> 0:02:19.519 I love to be on my motorcycle. I love to 0:02:19.560 --> 0:02:21.960 spend time with my dogs. Have three dogs, one small 0:02:21.960 --> 0:02:23.400 and two big Bernie Mountain dogs. 0:02:23.960 --> 0:02:25.240 And you're in advertising. 0:02:25.400 --> 0:02:27.800 In advertising, my business partner and I have been together 0:02:28.160 --> 0:02:32.120 as a team for fourteen years and it's an intense business, 0:02:32.120 --> 0:02:33.880 but it's a lot of fun, especially now that we're 0:02:33.880 --> 0:02:36.239 out on our own. Very rewarding. So working weekends and 0:02:36.280 --> 0:02:38.600 late nights says okay, because we're doing it for ourselves. 0:02:39.000 --> 0:02:42.320 Rebecca and Scott share a long history. Their story began 0:02:42.440 --> 0:02:46.240 at an advertising firm based in Washington, d c. Scott 0:02:46.320 --> 0:02:49.880 had just landed a prestigious automotive account and was in 0:02:50.000 --> 0:02:53.480 need of an art director. When Rebecca landed that role, 0:02:53.800 --> 0:02:56.120 neither of them knew this would mark the beginning of 0:02:56.120 --> 0:03:00.680 a lifelong friendship. If you had to describe just three 0:03:01.160 --> 0:03:05.919 characteristics that Scott has that you appreciate, what would they be. 0:03:06.520 --> 0:03:09.520 His ability to connect with people. I always tease him 0:03:09.560 --> 0:03:13.160 and say it annoys me because everyone loves him, But honestly, 0:03:13.200 --> 0:03:16.280 it's a skill. It's just something natural. I think that 0:03:16.400 --> 0:03:20.480 he can do is just come in and immediately make 0:03:20.560 --> 0:03:24.280 you feel comfortable and make you feel safe to express 0:03:24.320 --> 0:03:27.440 your ideas and really wants. 0:03:27.160 --> 0:03:28.040 People to succeed. 0:03:29.400 --> 0:03:32.000 We brought her in and the two of us just clicked. 0:03:32.560 --> 0:03:34.560 One of the things in this business as a writer 0:03:34.960 --> 0:03:38.320 looking for our directors, that connection you make as a 0:03:38.360 --> 0:03:41.840 team is very important because you're throwing ideas out, you're 0:03:41.880 --> 0:03:43.600 kind of laying an all online, and you need somebody 0:03:43.600 --> 0:03:47.280 you can trust. And early on, very quickly I found 0:03:47.320 --> 0:03:51.480 that with Rebecca and found that the work was not 0:03:51.520 --> 0:03:53.640 only incredible, but it was more rewarding because we had 0:03:53.640 --> 0:03:54.920 a great friendship and it was a lot of fun 0:03:54.960 --> 0:03:58.160 working together. The funny thing about Rebecca is early on 0:03:58.280 --> 0:04:01.920 she learned how to call BS. I kind of meander 0:04:01.960 --> 0:04:04.000 around things I don't want to talk about, and she 0:04:04.160 --> 0:04:06.400 figured that out really early on, and so she calls 0:04:06.440 --> 0:04:08.640 me on it. So when I was pushing myself and 0:04:08.840 --> 0:04:11.040 wasn't feeling well or she could tell and I wasn't 0:04:11.040 --> 0:04:13.280 talking about it, she called me on it and would 0:04:13.320 --> 0:04:15.640 kind of make me deal with that. The trust we 0:04:15.680 --> 0:04:17.880 have for each other and the willingness to get up 0:04:17.920 --> 0:04:20.839 and throw ourselves into the madness every day knowing that 0:04:20.880 --> 0:04:23.880 we've got, you know, a friend in the foxhole with us, and. 0:04:23.960 --> 0:04:26.400 She actually has been in the foxhole with you in 0:04:26.480 --> 0:04:28.240 terms of your health challenges. 0:04:29.040 --> 0:04:32.640 She's been there through the entire journey. It wasn't long 0:04:32.680 --> 0:04:36.200 after she came on as my partner when things went 0:04:36.200 --> 0:04:38.240 downhill really quick. So she saw it from the get. 0:04:38.200 --> 0:04:42.640 To go, which coincided with a major milestone for Scott, 0:04:43.000 --> 0:04:46.240 turning the Big four to h He decided to use 0:04:46.279 --> 0:04:49.880 this landmark as inspiration to get into peak physical shape. 0:04:50.400 --> 0:04:52.760 Growing up, I remember my mom making people cakes with 0:04:52.760 --> 0:04:54.480 a foot in the grave and all black, and it 0:04:54.720 --> 0:04:57.320 was like forty was the big, you know hump, and 0:04:57.400 --> 0:04:59.800 it wasn't a midlife crisis, but I just felt like 0:05:00.080 --> 0:05:02.719 I wanted to get back to working out and feeling 0:05:02.760 --> 0:05:06.479 my best. So I started working out vigorously six days 0:05:06.480 --> 0:05:09.039 a week. I wasn't drinking alcohol, I was eating only 0:05:09.120 --> 0:05:12.719 help food. It was great and everything was going just 0:05:12.760 --> 0:05:14.680 as planned. I was feeling my best and. 0:05:14.640 --> 0:05:17.120 You were doing P ninety X, which is that is 0:05:17.160 --> 0:05:18.120 not for the week at. 0:05:18.000 --> 0:05:21.360 Heart, it's not, and it promises change in ninety days, 0:05:21.360 --> 0:05:23.320 and it did. I mean, I've got a photo my 0:05:23.520 --> 0:05:26.200 wife took me with my kids on a beach right 0:05:26.240 --> 0:05:28.040 around the time I had finished the first ninety days. 0:05:28.120 --> 0:05:29.560 I mean, it was exactly what I wanted to be. 0:05:29.600 --> 0:05:33.400 I was fit, I looked healthy, I was happy. And ironically, 0:05:33.640 --> 0:05:35.440 it was right around that time that I started to 0:05:35.480 --> 0:05:38.000 experience some symptoms and things that seemed off. 0:05:41.839 --> 0:05:46.039 And then it took something visual, something physically visual, for 0:05:46.160 --> 0:05:47.560 you to go to the doctor. 0:05:48.279 --> 0:05:50.400 Yeah, I had developed a little bump on the side 0:05:50.400 --> 0:05:52.559 of my nose that I just thought was adult acne 0:05:52.640 --> 0:05:55.159 or a pimple and just kind of annoying, and I 0:05:55.240 --> 0:05:56.880 let it go. But then a couple of weeks went by, 0:05:56.920 --> 0:05:58.400 I noticed it was still there, and I held a 0:05:58.440 --> 0:06:00.280 hot compress on it and tried a few things, and 0:06:00.560 --> 0:06:03.839 it just would not go away. So I went to 0:06:03.880 --> 0:06:07.320 a different doctor and the first thing he said was, 0:06:07.520 --> 0:06:08.960 you need to have a biopsy. This could have been 0:06:09.040 --> 0:06:12.359 cancer just off the cuff, which you know is not 0:06:12.440 --> 0:06:13.280 what you're expecting. 0:06:13.320 --> 0:06:17.560 And you hear the word zeroed a hundred, it was see. 0:06:17.600 --> 0:06:19.520 Zeroed one hundred and fifty. And I experienced that a 0:06:19.520 --> 0:06:22.280 few times in this journey. But so I did go 0:06:22.480 --> 0:06:25.760 have a biopsy, and about a week later received a 0:06:25.760 --> 0:06:28.839 postcard that my doctor wanted to see me during his 0:06:28.839 --> 0:06:31.960 office hours, which was frightening because your mind runs and 0:06:32.000 --> 0:06:33.839 I've dishard cancer and now they want to see me. 0:06:33.880 --> 0:06:36.120 But they sent a postcard that didn't call. So I 0:06:36.160 --> 0:06:39.400 made an appointment and went in and he was almost 0:06:39.400 --> 0:06:42.599 excited and fascinated because he said, I've never seen a 0:06:42.640 --> 0:06:45.159 case of this. He said, what you have is called sarcoidosis, 0:06:45.720 --> 0:06:49.279 which just sounds horrible in a way. I was glad 0:06:49.360 --> 0:06:52.120 because it wasn't cancer, but I was curious. I'd never 0:06:52.160 --> 0:06:55.640 heard of what sarcoidosis was, and he explained that it 0:06:55.680 --> 0:06:56.640 was incredibly rare. 0:06:57.600 --> 0:07:02.240 Sarakoidosis is an inflammatory disease that can affect various organs 0:07:02.240 --> 0:07:05.239 in the body. Due to its rarity, research is limited, 0:07:05.600 --> 0:07:09.720 making it difficult to fully understand or treat. It often 0:07:09.800 --> 0:07:13.560 presents as a mystery to doctors and patients alike, as 0:07:13.600 --> 0:07:15.480 the symptoms can vary greatly. 0:07:16.240 --> 0:07:18.600 He said, you're the first case I've ever seen. You're 0:07:18.640 --> 0:07:22.680 probably the last case I'll ever see. And the majority 0:07:22.840 --> 0:07:25.840 of people who get sarcoidosis it just resolves on its own. 0:07:26.080 --> 0:07:28.320 But he said, we're not going to do anything. We'll 0:07:28.400 --> 0:07:30.680 keep an eye. Don't go online and research it. If 0:07:30.680 --> 0:07:32.560 you go to WebMD, it'll scare the hell out of you. 0:07:33.280 --> 0:07:35.360 And of course you immediately went on. 0:07:35.960 --> 0:07:38.280 I did, and it was frightening, but I just kind 0:07:38.320 --> 0:07:39.880 of relied on what he said, which is this is 0:07:39.920 --> 0:07:42.000 going to resolve itself, and so I forgot about it. 0:07:42.600 --> 0:07:45.880 So the bump went away, and so did your thoughts 0:07:45.920 --> 0:07:51.360 about sarcoidosis. It did. Scott easily immersed himself back into 0:07:51.440 --> 0:07:56.240 his work. However, a year later, a persistent cough sparked new. 0:07:56.160 --> 0:08:00.560 Concerns and wasn't an allergy type cough. Like I had 0:08:00.560 --> 0:08:03.440 a cold. I couldn't not cough and it was loud, 0:08:03.440 --> 0:08:05.120 so I would close my door and it would happen 0:08:05.160 --> 0:08:06.640 for bouts of minutes at a time. 0:08:07.920 --> 0:08:09.760 Did you think allergies, did you think? 0:08:09.920 --> 0:08:11.760 I asked. I had never felt it. I grew up 0:08:11.800 --> 0:08:13.960 with allergies, I grew up with asthma, and it was 0:08:14.120 --> 0:08:16.960 nothing like I had experienced. So I went to my 0:08:17.120 --> 0:08:20.400 GP and he said, it's definitely allergies, and he gave 0:08:20.440 --> 0:08:22.560 me some medicine, and about a week later I went 0:08:22.600 --> 0:08:25.920 back and it hadn't subsided, and he tried another medication. 0:08:26.760 --> 0:08:29.119 At one point, the coughs were bad enough I actually 0:08:29.120 --> 0:08:32.480 cracked a rib. I mean, that's how violent were and 0:08:32.559 --> 0:08:36.000 I could not suppress it, so it became worrisome. But 0:08:36.040 --> 0:08:39.520 they did chest x rays and they said nothing looks off, 0:08:39.760 --> 0:08:41.840 and over about a month and a half or so, 0:08:41.880 --> 0:08:43.960 it started to taper off on its own. So to 0:08:44.000 --> 0:08:45.520 your point, I just forgot about it and I went 0:08:45.559 --> 0:08:47.560 back to working out. Everything seemed fine. 0:08:48.200 --> 0:08:49.160 He didn't like to. 0:08:49.160 --> 0:08:52.640 Talk about it and dwell on it. He wanted to 0:08:53.440 --> 0:08:56.240 really just keep going business as. 0:08:56.240 --> 0:09:01.240 Usual, though they would come and go. Erratic symptoms began 0:09:01.320 --> 0:09:05.079 to plant seeds of doubt in Scott's mind. After ignoring them, 0:09:05.120 --> 0:09:09.319 for another year and a half. New manifestations became impossible 0:09:09.480 --> 0:09:10.160 to overlook. 0:09:11.360 --> 0:09:14.040 The symptoms that really got me that I couldn't understand 0:09:14.200 --> 0:09:17.800 were heart related, and it started. I can remember the 0:09:17.840 --> 0:09:20.160 exact night. It was about eleven thirty or so. I 0:09:20.240 --> 0:09:23.120 was going to bed. It was quiet, and all of 0:09:23.200 --> 0:09:26.200 a sudden, in a completely resting state, my heart was racing, 0:09:26.800 --> 0:09:28.520 as if I'd been on a treadmill, and I remember 0:09:28.559 --> 0:09:30.600 sitting up and just gasping for air. It came out 0:09:30.600 --> 0:09:33.760 of nowhere, and then I would feel these just really 0:09:34.080 --> 0:09:34.840 hard beats. 0:09:37.520 --> 0:09:39.200 What did you make of it at the time? Did 0:09:39.240 --> 0:09:40.400 you think it was anxiety? 0:09:41.200 --> 0:09:43.520 That's exactly what I thought. My whole life had been 0:09:43.559 --> 0:09:47.280 prone to overthinking things and being stressed and anxious about work, 0:09:47.320 --> 0:09:49.480 and so I figured that's what it was. And maybe 0:09:49.520 --> 0:09:52.319 i'd been drinking too much coffee. I'll watch that, and 0:09:52.880 --> 0:09:54.200 things seemed to go back to normal. 0:09:54.800 --> 0:09:59.080 He doesn't always react the best to someone confronting him 0:09:59.120 --> 0:10:02.360 with things like that, but I think he really likes 0:10:02.360 --> 0:10:06.199 to make everyone else feel at ease with humor and 0:10:07.440 --> 0:10:12.280 stories and making everything fun, so you know, on the surface, 0:10:12.720 --> 0:10:16.760 going through something like this, he doesn't really want to 0:10:16.800 --> 0:10:18.640 talk about it a whole lot. 0:10:19.280 --> 0:10:20.680 But then it started to pick up and it was 0:10:20.679 --> 0:10:23.520 happening again and again. I went in to see my 0:10:23.559 --> 0:10:26.840 doctors and explain what was happening. And what's interesting with 0:10:26.920 --> 0:10:29.000 things like this is the protocol is about a ten 0:10:29.080 --> 0:10:31.920 second EKG. They put all the electros on you, They 0:10:31.960 --> 0:10:35.000 run the EKG for about ten seconds, pull everything off, 0:10:35.040 --> 0:10:37.360 look at it, and they said everything was. 0:10:37.320 --> 0:10:41.720 Great, and you're physically presenting as someone who's an optimal. 0:10:41.280 --> 0:10:44.840 Health, absolutely great shape. They asked a lot of questions 0:10:44.920 --> 0:10:46.720 and I took comfort. That's what I wanted to hear 0:10:46.840 --> 0:10:49.080 was everything was fine. So I went home, but you know, 0:10:49.160 --> 0:10:51.480 your own body, and I started to experience this even 0:10:51.520 --> 0:10:53.360 during the day. I would feel like just out of 0:10:53.360 --> 0:10:55.600 the blue. It's hard to describe, but things would get 0:10:55.640 --> 0:10:57.880 kind of quiet. It was almost like they were cotton 0:10:57.920 --> 0:10:59.520 in your ears. You could hear your heart and it 0:10:59.520 --> 0:11:02.240 would start racing. So I think I went into the 0:11:02.280 --> 0:11:08.160 doctor probably four or five times with those same symptoms. 0:11:08.360 --> 0:11:11.360 And it was interesting because I went and the doctor 0:11:11.400 --> 0:11:13.440 who was going to be performing the test walked in. 0:11:13.480 --> 0:11:16.040 He goes, what are you doing here? And I explained it. 0:11:16.120 --> 0:11:17.559 He goes, you're imperfect health. 0:11:18.120 --> 0:11:20.160 So what was the reaction you were getting. 0:11:20.840 --> 0:11:23.760 The reaction was interesting. At first they were interested, and 0:11:23.800 --> 0:11:26.640 then I wouldn't say annoyed, but I was coming in 0:11:26.679 --> 0:11:28.800 with the same thing and I was getting the same results. 0:11:29.240 --> 0:11:31.600 At one point they gave me some anti anxiety medication 0:11:31.679 --> 0:11:34.160 and that did nothing. But after I mean, I don't 0:11:34.160 --> 0:11:35.920 know if it was four or five six times of 0:11:36.000 --> 0:11:39.079 going in, my doctor came in one day and just said, 0:11:39.200 --> 0:11:41.640 I fear that you're a hypochondriac. And he said it 0:11:41.640 --> 0:11:45.800 directly to me, and I was shocked because I had 0:11:45.840 --> 0:11:47.640 never been more in tune with my body and I 0:11:47.720 --> 0:11:50.800 knew something was off. And I was frustrated and explained 0:11:50.800 --> 0:11:52.840 to him there's something going on. I just know there is. 0:11:52.880 --> 0:11:54.719 And so his response was, if I just throw the 0:11:54.720 --> 0:11:56.640 book at it, if I run every test I can 0:11:56.640 --> 0:12:00.520 think of and they come back negative, promised to not 0:12:00.559 --> 0:12:03.800 come back, that's the deal. And I said, one hundred percent, absolutely, 0:12:03.880 --> 0:12:04.439 let's do it. 0:12:05.720 --> 0:12:09.079 Over the course of two days, Scott underwent a series 0:12:09.120 --> 0:12:13.480 of tests, including real time heart monitoring, multiple blood panels, 0:12:13.760 --> 0:12:18.559 and detailed imaging of his heart. What a strange mental 0:12:19.120 --> 0:12:23.640 challenge that must have been for you, because Normally, when 0:12:23.720 --> 0:12:29.800 people are subjected to that barrage of testing, they're hoping 0:12:29.840 --> 0:12:34.640 that nothing is found, and you're hoping that something is 0:12:34.679 --> 0:12:37.640 found to validate what you've been feeling. 0:12:37.840 --> 0:12:40.600 At this point. That's what I wanted. I didn't want 0:12:40.640 --> 0:12:43.640 to believe I was a hypochondriac, so a large part 0:12:43.679 --> 0:12:45.480 of me did want them to find something, because then 0:12:45.480 --> 0:12:47.600 at least there was a course, there was a path forward. 0:12:47.880 --> 0:12:49.880 Here's what we're going to treat this and to remedy 0:12:49.920 --> 0:12:52.600 this and to fix this. It was Friday afternoon and 0:12:52.720 --> 0:12:54.720 I'm thinking, I'm going to go home and I'm going 0:12:54.760 --> 0:12:57.199 to work out, and I got a phone call from 0:12:57.280 --> 0:13:00.600 a nurse at my doctor's office who said, the doctors 0:13:00.600 --> 0:13:03.679 have seen some things in the tests that are concerning 0:13:03.760 --> 0:13:05.719 to them, is what she said, and they'd like to 0:13:05.720 --> 0:13:08.199 see you Monday morning. And I remember hanging up and 0:13:08.240 --> 0:13:10.640 being so frustrated because now I have the whole weekend 0:13:10.640 --> 0:13:13.680 to overthink this. They found something, and now. 0:13:13.520 --> 0:13:15.720 I got away, and to say to hear that on 0:13:15.760 --> 0:13:17.840 a Friday is not ideal. 0:13:18.320 --> 0:13:20.160 It wasn't well. 0:13:20.200 --> 0:13:24.080 Scott's concerns that something was wrong were being validated. The 0:13:24.160 --> 0:13:27.600 lack of information going into the weekend added to a stress, 0:13:28.120 --> 0:13:34.720 but Scott wouldn't make it to Monday without answers. 0:13:34.760 --> 0:13:37.920 Saturday, my wife and I went over to my mother 0:13:37.920 --> 0:13:40.320 in law's house. I just remember that feeling came over 0:13:40.360 --> 0:13:42.560 me where I felt like my head was packed with cotton. 0:13:42.640 --> 0:13:45.280 I couldn't really hear them anymore, and I got numb, 0:13:46.000 --> 0:13:48.200 starting with my face. I remember my lips started to 0:13:48.240 --> 0:13:51.440 tingle and my arms got numb. So I sat down 0:13:51.480 --> 0:13:53.200 because I was afraid I was going to pass out. 0:13:54.200 --> 0:13:56.680 And all I could think was something's wrong, something is 0:13:56.880 --> 0:13:59.280 very wrong, and I couldn't say it. I couldn't get 0:13:59.280 --> 0:13:59.959 the words out. 0:14:00.600 --> 0:14:03.559 Oh my gosh. So it's almost like those trapped nightmares 0:14:03.600 --> 0:14:05.839 where you can't even scream to wake yourself up. 0:14:06.000 --> 0:14:08.640 It's exactly what it was. And I'm sitting on this 0:14:08.720 --> 0:14:10.800 couch and I can see the two of them talking 0:14:11.360 --> 0:14:13.320 and I don't know if I made a noise or what, 0:14:13.520 --> 0:14:15.440 but I remember my mother in law looking at me 0:14:15.480 --> 0:14:17.640 and she was like, my god, you're pale as a ghost. 0:14:18.480 --> 0:14:20.880 And at that point there was no question. They just 0:14:20.880 --> 0:14:22.880 got me to the car and my wife drove me 0:14:22.880 --> 0:14:25.560 to the hospital, and the minute we went in, they 0:14:25.680 --> 0:14:29.040 dropped me into a wheelchair and rushed me back. So 0:14:29.080 --> 0:14:31.080 my wife had mentioned there's something wrong with his heart. 0:14:32.000 --> 0:14:34.560 And when they brought me into triage, I mean the 0:14:34.600 --> 0:14:37.280 minute they put the connections on me, for the monitors, 0:14:37.680 --> 0:14:40.160 all help broke loose, every alarm went off, and there 0:14:40.240 --> 0:14:44.040 was just this panic. And for the remainder of that day, 0:14:44.040 --> 0:14:46.440 in that evening, it was just a constant back and 0:14:46.480 --> 0:14:49.400 forth with doctors and nurses running in. They would run in, 0:14:50.240 --> 0:14:52.440 tell me to take deep breaths, try to relax, and 0:14:52.800 --> 0:14:55.320 it's not easy to do when this is happening. And 0:14:55.360 --> 0:14:58.040 I finally was able to talk and interact again, and 0:14:58.080 --> 0:15:01.640 I asked a nurse what is going on? And she said, 0:15:01.640 --> 0:15:04.080 your heart is in VT and we can't figure out why. 0:15:04.160 --> 0:15:07.680 So I was in partricular tachycardia and she said, the 0:15:07.720 --> 0:15:09.560 bottom of your heart is beating so fast it is 0:15:09.600 --> 0:15:11.280 not getting enough blood to your body. 0:15:15.640 --> 0:15:20.120 Ventricular tachycardia is a serious condition where the heart beats 0:15:20.160 --> 0:15:24.680 abnormally fast, starting in the lower chambers. If left untreated, 0:15:24.920 --> 0:15:28.280 it can lead to fainting, heart failure, or even sudden 0:15:28.360 --> 0:15:31.640 cardiac arrest. How did you not die? 0:15:32.120 --> 0:15:36.120 One of my doctors feels that I was equal parts 0:15:36.200 --> 0:15:40.080 lucky and also because I had been working out so hard. 0:15:40.120 --> 0:15:43.080 He feels that my heart was just strong enough. It 0:15:43.120 --> 0:15:46.240 was barely getting me by. And in hindsight, leading up 0:15:46.280 --> 0:15:48.720 to this, I can remember trips we took as a family. 0:15:48.800 --> 0:15:51.760 I was walking around the beach, not feeling well, driving 0:15:51.800 --> 0:15:54.520 all these times this is happening, not realizing my heart 0:15:54.600 --> 0:15:55.520 was slipping into VT. 0:15:57.240 --> 0:16:00.480 At this point, Scott was on the brink in with 0:16:00.560 --> 0:16:05.640 seemingly random symptoms now leading to ventricular tachycardia. The physical 0:16:05.640 --> 0:16:09.600 struggle was clear that the mental toll was just beginning 0:16:09.640 --> 0:16:10.240 to surface. 0:16:11.120 --> 0:16:13.160 I laid in bed that night and it's like, I've 0:16:13.200 --> 0:16:16.480 got a family with young kids who you know, my 0:16:16.600 --> 0:16:19.640 daughter would remember me, my son maybe a bit. I've 0:16:19.920 --> 0:16:22.520 got a career like I can't afford to pay my 0:16:22.520 --> 0:16:25.240 bills if I'm not working. Rebecca had just come on. She's, 0:16:25.560 --> 0:16:28.000 you know, a brand new partner to me, and I'm 0:16:28.040 --> 0:16:29.840 texting people like I'm not going to be at work 0:16:29.880 --> 0:16:32.400 for a while. It's not looking good. Some things are happening. 0:16:32.960 --> 0:16:34.440 And trying to process all of this. 0:16:35.760 --> 0:16:42.240 In terms of concerns for his health or longevity. Do 0:16:42.280 --> 0:16:47.600 you remember Scott ever voicing his fears about the. 0:16:47.560 --> 0:16:51.440 Future, absolutely, because there were ups and downs for a 0:16:51.560 --> 0:16:54.480 very very long time. So I mean he was definitely 0:16:55.280 --> 0:16:58.680 concerned about the future and if he was going to 0:16:58.680 --> 0:17:01.720 be a part of it, which I think is something 0:17:01.800 --> 0:17:05.760 that was very difficult for him to wrap his mind 0:17:05.800 --> 0:17:09.080 around and live with every day. I mean, how do 0:17:09.119 --> 0:17:12.040 you live with not knowing? It's not like the doctors 0:17:12.040 --> 0:17:15.399 could say you have X number of years. They just 0:17:15.480 --> 0:17:18.200 didn't know, And how do you process that and live 0:17:18.240 --> 0:17:21.399 with that and go on with your life not knowing. 0:17:23.920 --> 0:17:28.280 We'll be right back with Symptomatic a Medical Mystery Podcast. 0:17:31.160 --> 0:17:39.760 Now back to Symptomatic a Medical Mystery Podcast. At forty, 0:17:39.840 --> 0:17:43.200 Scott was in peak physical shape. Then a small bump 0:17:43.200 --> 0:17:48.200 on his nose led to a surprising sarcoidosis diagnosis. Doctors 0:17:48.240 --> 0:17:52.160 reassured him it was nothing serious, but his symptoms, including 0:17:52.240 --> 0:17:57.560 a racing heart, persisted. Scott's concerns grew confident there was 0:17:57.600 --> 0:18:01.480 more to the story. Scott pushed for more tests. Then 0:18:01.600 --> 0:18:05.680 came a terrifying episode. Suddenly unable to speak or move, 0:18:06.119 --> 0:18:08.640 he faced a life threatening heart condition. 0:18:22.240 --> 0:18:23.919 And then as we got into the wee hours of the night, 0:18:23.960 --> 0:18:26.520 I couldn't sleep fewer doctors and nurses were coming in. 0:18:26.560 --> 0:18:29.280 They were starting to get it under control, and it 0:18:29.320 --> 0:18:32.200 was about eight in the morning when cardiologists came in. 0:18:32.720 --> 0:18:35.640 It was almost like a movie. He came in and 0:18:35.760 --> 0:18:37.720 as he was reading my chart, he would bounce on 0:18:37.760 --> 0:18:39.520 his toes, up and down on his toes, and then 0:18:39.560 --> 0:18:41.160 about every fourth time he would click. 0:18:40.920 --> 0:18:43.200 His heels and the Wizard of Oz. 0:18:43.320 --> 0:18:46.800 It was unsettling, but I'm just like, get to it. 0:18:46.840 --> 0:18:49.280 What is this? And he just kept bouncing and then 0:18:49.320 --> 0:18:51.199 he put the chart behind his back and looked at 0:18:51.200 --> 0:18:53.639 me and said, we may be looking at a transplant. 0:18:54.560 --> 0:18:57.080 The news was a lot to take in, hard to 0:18:57.119 --> 0:19:00.639 even process, but Scott wasn't about to accept that without 0:19:00.720 --> 0:19:02.160 seeking a second opinion. 0:19:02.800 --> 0:19:05.000 Another doctor came in and said, we've got tricks up 0:19:05.040 --> 0:19:06.879 our sleeves and we're going to get to the bottom 0:19:06.880 --> 0:19:10.399 of this. So they transferred me to another hospital in 0:19:10.480 --> 0:19:13.640 Virginia and Nova Fairfax, which has got a great cardiologist 0:19:13.640 --> 0:19:17.840 department and is known for dealing with severe heart issues. 0:19:18.520 --> 0:19:21.359 I was given a very long MRI. I remember it 0:19:21.520 --> 0:19:24.000 taking forever. It just kept going and going and going, 0:19:24.080 --> 0:19:26.679 and then being brought back to my room and a 0:19:26.720 --> 0:19:30.800 doctor came in and she said, we've figured out what's 0:19:30.840 --> 0:19:34.520 happening is you have cardiacs arquidosis. And that's when my 0:19:34.600 --> 0:19:36.320 brain reeled back and I was like, my god, we 0:19:36.400 --> 0:19:38.720 knew all along, and we somehow all dropped the ball 0:19:38.760 --> 0:19:39.040 on this. 0:19:42.640 --> 0:19:46.480 The most insidious of medical mysteries because it was solved 0:19:47.080 --> 0:19:47.800 in the beginning. 0:19:48.080 --> 0:19:50.680 It was solved in the beginning and then forgotten because 0:19:51.080 --> 0:19:53.320 nobody gets this, and especially a forty year old guy 0:19:53.320 --> 0:19:55.960 who's working out, and everybody thought it would resolve itself. 0:19:56.440 --> 0:20:02.639 And so it's allowed to progress under your radar, under 0:20:02.920 --> 0:20:08.200 medical radar, until it arrives at the worst possible manifestation 0:20:08.320 --> 0:20:08.960 of the condition. 0:20:09.640 --> 0:20:12.640 Yeah, and by then it was in my lungs, my spleen, 0:20:12.920 --> 0:20:14.920 my liver, and my heart. 0:20:15.920 --> 0:20:18.919 Doctor Mitchell Sotka is the chief of heart Failure and 0:20:19.000 --> 0:20:23.639 transplant at a Nova Shaw Heart and Vascular in Falls Church, Virginia, 0:20:24.200 --> 0:20:26.880 the expert Scott would later turn to in his journey. 0:20:27.160 --> 0:20:31.120 Doctor Sotka breaks down the rarity of cardiac sarcoidosis. 0:20:31.119 --> 0:20:35.720 For us, it is a relatively rare disease and one 0:20:35.800 --> 0:20:39.960 that many people are not comfortable managing, even cardiologists, even 0:20:40.000 --> 0:20:42.800 many heartfare specialist cardiologists. 0:20:43.200 --> 0:20:46.280 Just taking a little step back, could you define for 0:20:46.359 --> 0:20:51.000 the listener what sarcardosis is and also explain why it's 0:20:51.040 --> 0:20:52.480 so challenging to treat. 0:20:53.119 --> 0:20:58.359 Sure so, sarcoidosis as a broad condition is probably an 0:20:58.440 --> 0:21:03.200 inflammatory condition that is autoimmune, meaning it is your body 0:21:03.560 --> 0:21:07.600 fighting against itself or attacking itself. But what happens is 0:21:07.720 --> 0:21:12.040 it is inflammation caused by your immune system attacking your body. 0:21:12.400 --> 0:21:16.160 And this disease can occur in quite literally any part 0:21:16.160 --> 0:21:19.360 of the body and is most common in the lungs, 0:21:19.720 --> 0:21:23.480