00:00I was 24 years old, went into heart failure. Not 1 in 5,000 people get this diagnosis. No way that
00:05I could live another 10 years on this heart. These cases are found in autopsies and almost 100%
00:11of those cases are exercise induced, which is kind of insane because I literally run marathons on
00:17this heart. This is the kind of anomaly that people have when you hear horrible stories of
00:21people in their 20s having a heart attack or kids on a soccer field passing away from physical
00:27activity. But anyways, people keep asking me, how did you know or how did you not know?
00:31So I'm going to go through the diagnosis, the symptoms, the surgery, the process, the whole
00:35thing. From as early as being a toddler, I had had episodes of passing out and I've gotten worked
00:40up for that a couple of times. I've gotten an EKG, but the only thing that could really diagnose what
00:44I have is a CT scan with contract. About a year before I was diagnosed, I started to experience
00:49shortness of breath and I started losing weight. By the time surgery rolled around, I'd lost like
00:5420% of my body weight. Fast forward, six months before I got diagnosed, I started to experience
00:59really horrible chest pain. I thought that I was having panic attacks, so I hired a therapist.
01:04I was having insane heart rates, like north of 200. I started getting night sweats, hand
01:10swelling, rashes. By the end, I could not get up a flight of steps and that was pretty insane
01:16for someone who had run marathons before. It was all very, very unusual. I remember looking
01:22up my symptoms and WebMD said, you were in heart failure. I was like, yeah, right. I just
01:26went and finished my workout because I'm 24. Six weeks before my diagnosis, I ran a half
01:33marathon that was a flawless time. It was a great day. After that, my health just absolutely
01:38deteriorated. I thought that I was having a really hard time recovering. The shortness of
01:42breath, I thought maybe I'm dehydrated, maybe I'm anemic. The nurses joked that I was basically
01:48overdosing myself on iron. Crazy black market liquid supplements. I was taking like three
01:54times more iron than I needed in a day. I went to my primary care physician and laid
01:58all of this out to her and she looked at me and was like, you're 24. We're going to get
02:02your blood work done. But I've seen people that are in heart failure before and you can
02:06typically tell like they look unwell and you look fine. And we both just kind of laughed
02:10like that would be crazy. And when I got my blood work done, I passed out and started
02:16throwing up and I had the same shortness of breath, nausea, like the whole, everything that
02:21I'd been experiencing came on so strong, like passing out when you give blood. Okay. But this
02:26was excessive. So at this point, my dad and my stepmom were pretty moved in and I gave them an
02:31update one night and they ended up calling a neighbor. People are amazing to give me a full
02:37workup. And I was the hospital the next day and nothing's getting better. But I'm like, not really
02:41listening to my body, not taking the time to set the, but they called me and they were like,
02:45you're going today. And the nurse was like, I have availability today or in a month. So you better
02:50get your butt over here. And they gave me the full workup. I had an EKG and echo and a CT of my lungs
02:59with contrast. They were ultimately evaluating me for pulmonary embolism, not anything with my heart.
03:03They were looking at my lungs. The radiologist looked at it and she said, we're good. She's healthy.
03:08The, the surgeon looked at it later that afternoon with me present in the room. And I watched him go
03:13gray, like put on his home doctor face. And he moved me to a bigger conference room. And he was
03:17like, it's time to FaceTime your dad. And I made a joke. I was like, oh, we get the big room now.
03:21I'm special. Like must be serious. That night he diagnosed me with an anomalous left main coronary
03:27arteries. He saw it on the stand and called a cardiologist and they confirmed it that night.
03:31But he did tell me two things. He said, it will probably be surgery. He didn't tell me what kind of
03:35surgery. You will not live another 10 years on this heart, which at the time I was so unbelievably
03:40shocked that it didn't really register with me. I'm not much of a hypochondriac. So I honestly left
03:45this. They're overreacting. Like I proceeded to call my parents and tell them the news and call my
03:52best friends and ask them to go get dinner. And then explained it to them kind of in a chuckle.
03:56And they sat there in front of me, like, what, how are you laughing right now? There's no
04:00way. It's not going to be that big of a deal. I was back there two days later to pick up a heart
04:07rate monitor and that was to track arrhythmias, but really to, to ultimately track a heart attack.
04:12I was back six days later to then talk to a cardiologist. She said, your only option is open
04:18heart surgery and you need to get it done quickly. The surgeon, the surgeon that diagnosed me also
04:23warned me that this is not the kind of thing that just anyone can do. And I definitely experienced a
04:28little bit of some doctor's enthusiasm, a little bit of overconfidence of, yes, I can fix this
04:33being such a unique case. Like hospitals in the United States probably see two or three of these
04:38a year or so. Then I started the process of basically surgeon shopping. Basically in these
04:43weeks between getting diagnosed and having the surgery, the chest pain was debilitating. I could
04:48not get excited. I played an arcade game and like got even the slightest bit of like competitive
04:55excitement and it put me in the hospital. Six weeks later from, from diagnosis, six weeks to
05:01surgery date. I spent probably four weeks figuring out what surgeon was going to do this. Going from
05:07Ohio where I live to the Medical University of South Carolina to get this surgery done. I loved the
05:13doctor that did this for me, but just to put it into perspective, he is a pioneer in this congenital
05:20heart space as is MUSC. And he had seen six of these in his career. Like
05:24you
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