Episode 5: 2 Women Both Athletes, 2 Surgeries, 2 Stories to Share

SPEAKER_04 0:00

You know, you've got to listen to your gut instinct. And I should have done that several times in this process. But one time when I did was when he was telling me all these things. And I just thought, like, this is not right. This is not the problem. You know, this is it's not something else. This is something is wrong with my heart.

SPEAKER_00 0:28

Welcome to Imperfect Heart, a place for you to join me, Jeff Holden, in conversations, discussions, and dialogue about our hearts and the impact myocardial bridges have on them. We'll talk with healthcare professionals, those in related fields that support our condition, and others just like us with stories of their myocardial bridge experiences. It's my intention for this content to inform, educate, entertain, and even motivate or inspire you in your personal journey on dealing with a myocardial bridge. Most importantly is to have you leave each episode with hope, knowing you're not alone and that what you're experiencing is real. Our conversation today is going to be a bit different, unique, as I'm talking with two female athletes who are both accomplished in sport but were crippled by their myocardial bridges. Both have since been successfully unroofed and are going to share their stories. One from the perspective of being 18 months recovered, and another from just six and a half weeks in surgery. So you'll be able to get a wonderful perspective on process, pain, and performance. Don't worry if you're not an athlete. Most of what we're discussing applies to all of us. It just may be scaled a bit differently. Veronica Thaxton is a mother of three children from their late teens to early twenties and works in finance for a medical technology company. She's been a triathlete since 2000 and an athlete all her life. She was diagnosed with a myocardial bridge in 2021 and was finally able to get all the pieces together for her surgery this year, 2023, in February. Barely seven weeks ago. Veronica resides in Texas. My second guest is Sarah Miller. She's the mother of two daughters in their 20s, is a staffing manager for Intel, and is an avid runner, marathoner, and self-proclaimed gym rat. She was diagnosed with hypertrophic cardiomyopathy and a myocardial bridge at the age of 48. Sarah had her unroofing completed in August of 2021, about 18 months ago. She lives in Folsom, California with her husband. We're going to have a two-part episode to cover first their process of identification and diagnosis, and then secondly, to discuss post-surgery and recovery. I am so looking forward to their stories. Veronica, welcome to Imperfect Heart. And Sarah, welcome to Imperfect Heart. This is the first time we've had multiple guests, and it certainly is the first time we've had multiple female athletes together to discuss some of the situations that they dealt with prior to surgery and now post-surgery in a variety of different capacities. Because Veronica, you're now only six and a half, not even seven weeks out from surgery. And Sarah, you're about a year and a half out from surgery. And of course, everybody knows my story from the earlier episodes. I'm, you know, a little over a year, a year and a quarter from surgery. So, Veronica, could you walk us through what occurred that got you to the point that you realized something was wrong?

SPEAKER_04 3:53

Yeah, I have been, like you said, I've been an athlete and been an athlete for most of my life. I've been a triathlete since 2000. And beginning of 2021, I was training for an ultra for a race, so just a run. And so I started the year, you know, with some pretty heavy training, went straight from that and training for a half iron man and completed that in June, and then straight into training for half Iron Man World Championships in September. And beginning of August 2021, I started having some left side chest pain. Nothing too significant, I wouldn't say, but I certainly noticed it, just sharp shooting pains that would come and go. Those lasted for a couple of weeks. And I thought it was about due for a checkup with my internist, get some blood work done. And, you know, always I'm real careful when I'm training, especially in a high level anyway, to have that monitored and tracked. And saw my internist about three weeks into August and told him of this chest pain I was having. And that same day, it started. Well, in addition to the chest pain that really wasn't too worrisome at the time, I started having some just pressure on the left side of my chest. Hadn't experienced it before. Still hard to describe, more than just like someone pushing in on your chest, just a very strange sensation. Hadn't experienced it. You know, my training didn't feel as good. And of course, as an athlete, you think, well, you know, how's my nutrition? How's my hydration? Why am I so tired? Am I sleeping? Am I overtraining? All these questions that athletes ask when the performance isn't where it should be. And, you know, couldn't figure anything out. But that day that I got the chest pressure, I thought, oh man, something is not right. But the visit to my internist didn't really go very well. And I know a lot of people share the same story. You know, he told me what many others have heard. It's all in your head. It's some anxiety. And he told me that because he too was triathlete. And, you know, he had known me for years and said, Well, you're healthy. And he ordered a chest x-ray and he did the EKG and calcium scoring CT, all of that was fine. So your fit is a fiddle, your just your stress is probably too high. I know your job is busy. It must be in your head and stress and anxiety. And, you know, I just, I just couldn't accept that. It didn't, I've got a busy job. I didn't feel like it was taking a toll on me mentally, though, or physically, and didn't really know what to do next, but left there thinking, all right, maybe I need some sleep and this feeling will go away. And from the end of October till September 9th, I was just able to do less and less until I could barely go for a walk. So I came from training at a high level for a half-iron man to barely being able to walk. Came home one day from a walk with just the classic heart attack symptoms, you know, chest pain raiding up my neck and down my arm and unable to walk and hard to breathe. So called my friend who's a nurse and she said, Go to the ER. What are you even doing? So I went. And, you know, you get the same thing there: a chest x-ray, an EKG, and another CT. And on the CT at the ER, they said that, well, you know, we we think there might be something there. It's inconclusive for blockages. So we think you need a heart calf. So I did that on the next day on September 10th. So this is all, you know, uh just three or four weeks from nothing to really bad. And the heart cath said, Well, arteries like fine, you know, but you've got a myocardial bridge. And I said, Okay, so what do I do? And they said nothing. Um, they said these are common, they're benign, and sent me home the next day with just a prescription for my calcium channel blocker and a statin, which I didn't need. And I when I said, Well, when can I run? They said, Oh, well, you know, give it a week, you know, you'll be fine. And they just clearly didn't know what to do with me. I'm young and fit and healthy. And the whole two days I was there, there were people, doctors and nurses, peeking in the window to look at this athlete who had this heart thing going on. And they still just, you know, shrugged their shoulders and said, All right, you know, thanks for stopping by. You'll be fine. Went home over the next couple of weeks. I started feeling worse. The pressure was intensifying. I was getting more left side chest pain. So I went back to the cardiologist who I had seen in the hospital, and he started treating me for pericarditis. Thought, well, you know, your troponins were elevated and you had some fluid around your heart. Let's treat you for pericarditis. Didn't work, kept feeling worse, and went back to him a few weeks later. And he said, Well, you know, it looks like it may be the bridge, but we should, you know, he'd already told me that you don't stint a bridge. He's done it once in 30 years. It's very risky because the stents can fracture. But at this point, he said, Well, it looks like it's your bridge. Maybe we should stint it. So I left and got a second opinion.

SPEAKER_00 8:49

Well, for everybody who is listening at this point, they all know they're holding up the double-crossed fingers. No, no, get another cardiologist, you don't stint a bridge.

SPEAKER_04 9:00

Absolutely. And there's a lot of talk about that on the Facebook page, which I like. But you know, if you I think the first thing probably that we do is when they say you have a myocardial bridge, you Google it. So, you know, I found Stanford Googling it and I read about stinting it and what to do and what not to do. So I thought, no, I'm I'm not gonna listen to any more of this. I'm gonna get a second opinion. And the second opinion cardiologist, I'm sure others will relate to this too. They get referrals to these great, highly respected, very credentialed and experienced cardiologists, and they can't help them. And that's what I ran into a second time. He told me three things eventually after more tests and an MRI and a check for pericarditis. He said, Well, three things. One, you had something going on, and he was referring to pericarditis, you know, just an explanation for the mysterious pain. You had something going on, you're getting better, and you're just afraid to work out. And I said, Really? Because I couldn't walk from the parking lot to the office. And right now it's just sitting here, my chest hurts, and there's pressure and it's hard to breathe. And he he told me it was in my head. So, you know, I went home discouraged, and I'm embarrassed and ashamed to say that I started to doubt myself and think, well, maybe this is in my head. Maybe I did have something going on and I've built this up, and maybe I really am afraid to push myself. So I did what any, you know, athlete in denial of having a problem would do. And on my walk the next day, I started to run a little bit, a minute or two at a time, and I'd walk a little bit more, another minute or two at a time. That worked for a couple days. And then the third day I did that, I couldn't walk. Horrible chest pain, horrible pressure. Ended up back in the ER that night. And when they called that cardiologist, he never returned the call. They didn't know what to do with me. I never heard back from him. And I thought this is crazy. By this point, it was April. So this started in August 21. By April 22, I was still unable to do anything and just frustrated, not getting better. And so I thought, okay, that's two cardiologists. They don't know what to do with me. Maybe it really is just a bad pace care case of pericarditis that won't heal. But I'm gonna go see a congenital heart disease guy and see if it is the bridge or not. And so, you know, I found one in town. You know, he didn't really have experience with these. He'd seen them, of course, but never had a patient symptomatic. And so I told him what was going on, and he said, Well, let's do a cardiopulmonary exercise test. Did that in June of 22, and I I just couldn't walk, you know. I got to do that.

SPEAKER_00 11:43

So you've gone if I can interrupt just for a second, from August 21, now you're all the way to June, seven months, almost eight months later, nine months of concern, having symptoms that even appeared to be heart attack-like.

SPEAKER_04 12:03

Yes. All the classic heart attacks heart attack symptoms, the pressure and the pain and the shortness of breath, and you know, down the left arm, up the neck, and and all of that. And you know, I was patient. They when they told me I was just pericarditis not healing. I I tried to believe that, and well, you have to give it time and give the medicines time, and I just yeah, it was frustrating. And Sarah, I'm sure you'll be able to relate to some of this, you know, just as an athlete coming from a busy lifestyle and and training to sitting on the couch and able to walk or carry groceries or or cook dinner or any of those normal things, just you know, forget about the working out. But just from that level of activity to not being able to carry on daily activities for so long, it's very frustrating. You know, I thought I was doing the right thing by getting second opinions and giving it time and it just How about your your actual doctor?

SPEAKER_01 13:00

Was he were a woman or a male, but did they continuously did you continue to go back to them and say I'm still not feeling well?

SPEAKER_04 13:09

I did with the initial internist when I went to him first. I did have a follow-up with him, and he said, I think you may need to see a rheumatologist. So I did in November, and I just, you know, I'm I'm talking to the rheumatologist. I never even took a seat. I think he came in talking about how I probably needed to be on some anti-reumatic drugs, even though I didn't have symptoms. He was checking me for joint swelling and dry eyes and all of these things, and still telling me that I needed to be on prednisone and hydroxychloroquine. And I just, you know, you've got to listen to your gut instinct. And I should have done that several times in this process, but one time when I did was when he was telling me all these things, and I just had like, this is not right, this is not the problem. Yeah, you know, this is it's not something else. This is something is wrong with my heart.

unknown 14:03

Yeah.

SPEAKER_04 14:03

So I didn't go back to that internist for a while, you know, not until I just needed some routine labs done.

SPEAKER_01 14:10

But part of it too is, and I I heard it kind of in your voice when you were talking initially, is we kind of want to hear what they're telling us. It's fine. We can go out and do our things. We're good. We you're it's all in our head. And so we think, okay, then I'll go push harder.

SPEAKER_04 14:29

And I because I can push. I'm an athlete. I can push. If if I've gotten in a little funk in my head mentally, I can get out of that.

SPEAKER_03 14:36

Exactly. Yeah. Yep.

SPEAKER_00 14:39

So you got through that June rheumatoid doc who's trying to tell you we have some sort of arthritic situation. And what then?

SPEAKER_04 14:50

Yeah, that was actually back earlier in the process. Oh, that was back in November 21. I just completely dismissed him because what he was saying was just so contradictory. And he said, he said many other things that just didn't add up. And so I thought, mm-hmm, no, it's my heart. It's not, you know, it's not a rheumatological problem. Yeah. And so in June of 22, after that exercise stress test, you know, it was just too much stress. I felt continuously worse for several days after. And when I called my cardiologist back, they had planned to do the FFR CT, but they were, you know, it was going to take a few weeks for insurance to approve that. And I called them back saying, is this normal after the exercise test? I just can't even walk now. And they said, no, it's not. Go to the ER. We're going to get that CT done and we're going to figure this out. So they sent me there. I showed up. They did the FFR CT and they said, it's your bridge. So yeah, from August of 21 till June of 22 to get a definitive answer. In hindsight, I wish I would have done things differently and pushed more towards the bridge. But you know, when you're being told it's so rare to have symptoms, then you know, you kind of go with the experts. But I think what we're going to learn now is that, you know, they still say it's very rare to be symptomatic from a bridge. I think we're going to learn that it's not rare. You know, it's not rare to be symptomatic that all of these people who've taken so long to get a correct diagnosis and are being told that it's in their head or it's another problem. It's rare to get the correct diagnosis, I think is going to be the case. Not it's rare to have the problem. But anyway, being being told that, you know, I thought, okay, well, I'll go down all these other roads and give it time, like I'm being told, but it was just enough. So when I got that diagnosis, my cardiologist, and he's still my cardiologist, didn't quite know what to do with me because he'd not seen anyone symptomatic before. And first he told me that surgery was not an option because it was deep. The measurements they gave me initially were 1.8 centimeters long and about four millimeters deep. So he said it goes right up to the cavity of the ventricle. Surgery is not an option, it'd be too risky. And I said, Well, am I going to live like this my entire life? Will I ever be able to run? He said, No, you won't be able to. And yes, this is how you're going to live. And I didn't accept that. I just said no. And he said, Well, give me a few weeks. Let me figure something out. And I said, Okay. Got home from the hospital and started downloading all my labs and ordering the CDs. And as soon as I got those, I sent my records off to Stanford, Chicago, and Cleveland Clinic. And but I I knew pretty much that Stanford was where I wanted to go. I'd read enough over the 10 months to know that Stanford was the place to be with their experience and really being the worldwide leaders in this. I thought that's that's where I need to get myself. At least get my records and have them reviewed and and see what they have to say.

SPEAKER_00 17:52

And then I'll make the assumption you had the provocative test at Stanford and they redid everything that you've already had done. So they did it their way. And at that point they identified your situation and said, here's what we can do.

SPEAKER_04 18:06

Uh yes. So, you know, it was there was a long waiting list. I guess they do one bridge surgery a week. So they received my records beginning of July. Of course, it takes some time. Dr. Schnecker reviews this on her own time. So it took about six weeks to be able to look at mine. And they said, you know, sign her up for testing, give her a surgery slot. And so I went back at the beginning of February, first week of February for testing. And yeah, you're right. They redid the CT and they found at Stanford that it was about twice as long as they initially told me, and that the RD went into the cavity of the ventricle. Not just that it was deep, right up to it, but it went into the ventricle. And then I had two bridges. So testing there was, you know, much different from the results I got back home.

SPEAKER_01 18:52

And you pursued that? I did. I just it really, I want to cry. I feel like I'm it makes me so sad that that that they were just okay to just say you have to live like that.

SPEAKER_04 19:07

Well, and you know, my my cardiologist did come around, you know, he when he said give me a few weeks, I I gave him a few weeks. I I sent my records on anyway. But then I got a call from Mayo Clinic in Rochester. He had sent my records there and they called to offer me a surgery date in December, beginning of December 22. And the boy, that sounded tempting. You know how it is when you're feeling bad and you just want to be fixed. And I talked to them and I listened, but you know, I didn't feel comfortable with the testing that they were going to do, or really the lack of testing, and with what they were agreeing to, and they were offering me surgery really based on what I felt like was an incomplete view of my records. Uh, they hadn't even seen everything that I had done. And so, you know, it was tempting, but I thought, hmm, if this is deep, I want to go to Stanford, I want to go where there's experience and knowledge. And and I'm glad I waited. It was really hard to wait that extra time, but gosh, it was so worth it, especially knowing that it was more significant than what I originally thought. Glad I waited.

SPEAKER_01 20:13

So your actual surgery was one what month? Your six months?

SPEAKER_04 20:17

Uh in February, it was scheduled for Valentine's Day. I was really excited about getting my heart fixed on Valentine's Day, you know. Had my heart broken on Valentine's Day. I've never had my heart fixed on Valentine's Day. But, you know, similar to Jeff, I had some pectus excavatum that needed to be corrected in addition to the unroofing. So Dr. Boyd, the day before surgery, said, you know, let's let's hold off. I want to talk to the thoracic surgeon and the radiologist to get the measurements for the pectus. And so they decided that I did need a correction. So put it off until February 16th. So that was my surgery date. I had the unroofing by Dr. Boyd and the modified ravage procedure by Dr. Berry.

SPEAKER_01 21:03

So other than the myocardio and the pectus excavatum. Do you have any other heart conditions? No.

unknown 21:13

Okay.

SPEAKER_01 21:13

No, no other heart conditions.

SPEAKER_00 21:15

So Sarah's actually teeing it up for a beautiful segue here. Okay. Because hers is a little bit of a different story in terms of what led her to her actual surgery. So go ahead, Sarah, why don't you start?

SPEAKER_01 21:29

Okay.

SPEAKER_00 21:30

And I have a visual of yours that's just so so different.

SPEAKER_01 21:33

Yeah. And mine started a long time ago. Mine started in 2013. Mine was kind of up and down. I was having issues. I would go to the doctor. They would do tests. Ultimately, they said, It's in your head. They did a stress test. They did multiple, multiple tests. And this is 2013. It was 2018, I think.

SPEAKER_00 22:05

Yeah, that sounds right.

SPEAKER_01 22:06

Yeah. When I don't know why I'm getting emotional about this. Because you're here.

SPEAKER_00 22:12

Because you're here to tell it, that's why.

SPEAKER_04 22:14

I actually just hearing 2013 made me emotional. Just hearing that this journey began for you so long ago.

SPEAKER_01 22:23

Yeah. So I went to breathing doctors and cardiologists in between 2013 and 2018 stress tests. And finally the breathing tests I did, the doctor looked at me and said, Your next stop needs to be at the psychologist. And I jokingly, but not jokingly, again, I pushed. I said, okay, well, I'm gonna prove them wrong. I'm I'm gonna push harder. I'm gonna train longer. I'm gonna, you know, all of the things that we do. And in 2019, I went out for a run and I knew I was not feeling well. I started up Costco Hill, and it's pretty significant hill in our area. And I thought, oh, I'm just tired. I've been traveling. I feel like I'm in a faint. I feel heavy. My chest is really heavy. I started feeling like, oh, I need to maybe go to the bathroom, just all of these feelings. And so I said to my friend who was running with me, I'm gonna jump into this outhouse really quick. And she said, okay. And next thing I know, I'm outside the outhouse on the ground, waking up. And I had completely passed out, hit my head, and had to be taken to the hospital in an ambulance. There, we get to the emergency room, and I am, I have a concussion, and and I'm clearly having some heart pain, and you know, my whole left side is heavy. I can't, it's tingly. And the doctor comes in and says, So you've had a heart attack and we're keeping you, and walks out of the room. And my husband and I are sitting there and we look at each other and I'm like, There's no way. There's no way I've had a heart attack. So they kept me there for a couple of days. They did multiple tests. My troponin levels just kept rising, rising, rising. So they would not let me leave until I completely until they started going down. And so they did. And from that point, so that was March of 2019. We did multiple tests. My doctor sent me to three different cardiologists. Every single one looked at me and said, if you feel like you're gonna faint, sit down. That was my that was my diet, that was my recommendation. No medicines, nothing. Just if you feel like you're faint, you need to sit down. And I said to the last one, Well, I would. I mean, I do, I have to. And he said, Well, most people won't. And I said, Okay. So I thought, I'm done. I'm not doing this. I'm just gonna keep pushing. And my doctor actually called me and said, I want to see you again. And I went in and I said, I'm done. This is ridiculous. I'm not gonna continue to do this. And he said, Can you just please see one more, one more card cardiologist? And I said, Absolutely. So I did. It was a female, the other ones I've seen. I had my first appointment with her and she said, You, I looked through your records because I had said to her, Well, they said I had a heart attack, like a mild heart attack. And she said, You've had three, and this is something that we need to take care of immediately. So from that point on, it was multiple tests, and I don't know all the names of them. I'm not really good at it. I just went and did them. And they ultimately she pushed, and I was in surgery in August of 2021. So it did take a little while, but it it was more of the cardiologist, you're fine, cardiologist, you're fine. And my doctor kept saying, You're not fine. I'm not gonna allow this. So he kept pushing me to keep going, keep going, and keep going. Cause within that time, I had had several different episodes that I went to the hospital of same symptoms, same everything. And so he said, This is not normal. You are young. I'm not gonna let you not be active, and I'm just gonna continue to push. So he did. He just kept pushing and pushing for me. And when I went to the last cardiologist, she was amazing. She basically said, This is not, this is bad. This is really bad. And people are gonna tell you that you don't need to get it fixed, but that's not even an option. I didn't realize this is how silly I am, when they said that I had to have surgery. I thought, oh, it's just gonna be really quick, like polylaparoscopic, just get in there and pull that. No, not the case. So no joke. A week before I had my pre-op and I go down and it's a doctor from he's he works at Kaiser, but he works with all of the the Stamford doctors. And so I had to go for my pre-op, and the the nurse was telling us, you know, this is this is what we do, this is your process. And he said, Do you have any, you know, questions for me? And I said, So so because you don't have to do like full, full heart surgery, it's probably pretty quick recovery. Mind you, you both know how much information we got before we know what it really was. But my mind was like, Oh, they're just doing a little sweater cut, is what he called it. So I'm thinking like a sweater cut. And the nurse looks at me and said, There's no such thing as like small heart surgery. You're having open heart surgery, Sarah. And I said, like cutting my bone and everything. And he said, Yes. They had already told me, but I think you just shut it out. Like there's no way I have to have like full-on open heart surgery. And so that was for me a, oh my gosh, this is really serious. But I just have a way of saying, it's fine, it's fine, we'll get through it. But we did it, and I cannot I mine was worse when they got in. So when they finally got, so initially they said it's a very slight dip into your heart muscle. And once they got in, the surgeon came in afterwards and said, had you not gotten this done, the next time I would have seen you is not alive. It had been not enough that they had to do a bypass. They were thinking they might have had to take an artery from another part of my body and and put it in, but he said it was way m deeper than we thought it was, and it was definitely deteriorating. So yours went really quick, it sounds like you had it. Yours kind of was the same thing, Jeff, right?

SPEAKER_00 28:57

Is it faster than than Veronica's.

SPEAKER_01 29:00

Yeah. And mine was over 2013 to my first episode was 2019. And from that point, it it went pretty quickly. Like I went from running, you know, five miles at a certain pace to I couldn't even run three steps without my heart rate getting to 220. So but it but again, mine wasn't as like I could still move and do things. I was just exhausted. Mine was more tired than it was like I could breathe, I could do all of that. But if I got super active, I would and my whole left side would go numb, my neck, my jaw, my I would feel like I was gonna throw up. So, but I could continue to do it. I wasn't so, so exhausted where like some people can't even it sounds like you couldn't even walk from one place to another.

SPEAKER_04 29:56

No, and you know, I it just oh gosh, it hurts me to hear how long you suffered with that from 2013 to six years like 2019. And you know, but but I can also relate to that. You know, I I was a little more severe in the when it hit me, it hit me and I declined rapidly and was able to do much of anything.

SPEAKER_03 30:19

Yeah.

SPEAKER_04 30:19

But I can so relate to, you know, if you can still get through the rest of your daily activities and you can do, you know, you're just a little more limited when you're pushing yourself. I can totally see this taking forever to finally get something done. It's like, well, I I'm pretty fine most of the time. When I'm not, I'm not. But when I'm okay, I'm okay. And thank goodness you had that doctor who was willing to push you and say, No, yeah, we're not stopping. There's something wrong. I think that's amazing. And you've got a really good one. That's great.

SPEAKER_01 30:48

And I think the other thing, oh, go ahead.

SPEAKER_00 30:50

I was gonna say for you, Sarah, an identification that you actually had three heart attacks.

SPEAKER_01 30:55

Yeah, yeah.

SPEAKER_00 30:56

By the time they got to your final diagnosis, that that's not good.

SPEAKER_01 31:00

Yeah, not good at all. No. And I think there was, I don't know how you both felt, but there was guilt for me as well, because I thought, am I doing this to run? So I asked my cardiologist, am I doing this to run? And she said, absolutely you are. You're doing this to live, and your living is this level. So yes, you are doing it, and you you should not feel guilty about that. And and no other doctor should ever say to you, we're not doing it, so you can run. And I thought, okay, I feel good. I went into it with no once I finally got over the fact that I realized I had to get my chest bone cut. I was, I had no nerves. I had my family was like really nervous about me because they thought, are you just not understanding what's happening? And I said, no, I'm gonna actually feel better. So no, I have no nerves about it. I'm excited. I'm excited to realize once you get through it, then I started realizing, oh, all those symptoms. I'm tired all the time, but I would fight it because I didn't like to be tired. So I would just say, I'm not tired. Mind never matter, not tired. You know, all of the time when I was running and struggling to keep up, knowing that wait, it's not just my cardio. It's not my physical body. Something is not right. But yeah, I didn't notice all of that until after.

SPEAKER_00 32:29

There is a word for that. It's called denial. I had massive. Because none of us want to accept it. No. It's still hard for me to say I had a heart attack. Yeah. How do you have a heart attack when you're in great shape or you think you're in great shape?

SPEAKER_03 32:41

Yeah.

SPEAKER_00 32:42

And to both of your points, if just on the front side of this discussion, before we get into the post-surgery side, the biggest thing somebody can do is something. Don't think it's okay. Don't think there's nothing wrong. Don't deny yourself there's an issue here. Because I think very similar to both of you, I did the same thing. And it's like I I rode the first time and I felt, and that was weird. I mean, mine was even more condensed than yours, Veronica. But I'm 20 plus years older than both of you, so I have the occlusion where the artery entries into the heart. And you know, I'll repeat again for anybody who didn't hear Dr. Schnitger's interview: 100%, 100% everybody who has a myocardial bridge has plaque buildup where the artery enters the heart. So the longer you go with the bridge, the more plaque buildup you're gonna have. The more plaque, the less blood flow. The less blood flow, the more likely you are to have some sort of a heart issue. And I just attribute it to the fact in my case that I was in pretty good shape all the way up until I wasn't. And it said, you're done. You're not gonna have a whole lot of time with this. And it was, you know, really rapid as well.

SPEAKER_03 34:03

Yeah.

SPEAKER_00 34:03

But mine didn't occur under stress as much as it did not stress. It worked better when I was stressing.

SPEAKER_01 34:11

Which is so different than yeah, completely different than mine. Trevor Burrus, Jr.

SPEAKER_00 34:14

Until I couldn't. And then everything went to heck. And it it nothing worked.

SPEAKER_01 34:18

Yeah.

SPEAKER_03 34:18

Yeah.

SPEAKER_00 34:19

But you both said it. You you keep pushing saying, okay, no, there's something not right here. This I have to figure this out. And you have to advocate for yourself because the doctors don't know. And I do believe the best doctor's responsibility that they assume is that it's not to just fix us, it's to get us back to where we were, or the best lifestyle they can get for us, not just an acceptance of a bad situation that you saw for sure, Veronica, where, well, that's as good as it's gonna get. You're gonna be either on meds or you're just not gonna walk around anymore. Yeah.

SPEAKER_04 34:56

Yeah, I did. And I'll have to say, I'm with that same cardiologist today. And I will see him for my follow-up. My first follow-up is tomorrow. You know, when I said he told me that, and I just I know he saw me in the hospital bed shaking my head, saying, No, just not accepting that. And he said, Well, give me, give me a few weeks. And man, he just really turned around. And those few weeks, he did his research. He found all of the Stanford stuff, obviously, because he was talking about some of that research, and at least did something. He was willing to listen enough to me and to see my non-acceptance of his response and and take some action and at least try to get me to Mayo and did more research. And then when I had these all these great options, you know, I heard back from uh Chicago and Stanford and Mayo, and I set up some time to talk to him about all these options that I had. And he had done so much, so much research. He had talked to he's got a group, he said, of other congenital heart disease cardiologists. He he text and they share cases and get, you know, ask questions. And he, after doing his research, you know, bounced it off them, and they all said Stanford's the place to be. And and I mean he's he's a believer now. And I think that's a great doctor who is willing to say, okay, maybe there is more to this. I've always thought this is benign, but I see your non-acceptance. I'm gonna try to help you. And then to, you know, keep researching and see all the literature that's out there and all the case studies and and kind of turn around and and come up to where we are. So it's it's great. I'm just I'm thrilled that I've got a cardiologist in town who can continue to care for me knowing the before and the after. And I'm happy, I guess, to be with him so that if there are any other bridge patients in town, you know, hey, here's another case. Now, now he's had one or two or or however many, but just happy that I ended up with someone who in the end was willing to give it another shot or learn more or or not accept my no.

SPEAKER_00 37:04

Right. And I think for all of us, look at the education we're providing, not only for the cardiologist or the doctors who are getting to work on us, it's for the benefit of everybody else who comes after us as well. That now that cardiologist or surgeon goes, I get it, I've seen this before, eh, it's real. I hear what you're saying because I've heard it before now, and I've seen the transfer from symptom to improvement. And that's such a big deal. And it's the same with my cardiologist who was open to saying, I don't know what's wrong with you. We need to find somebody who can help figure it out. And Sarah, it sounds like you found the the female cardiologist, your your cardiologist who said, You're something's wrong here.

SPEAKER_01 37:50

Yeah. It was no question to her. She said, I got your file, and I thought, why hasn't something already been done? And why are you saying you have not had a heart attack? And why are they okay with that? So it was interesting because I have such a I didn't have to well, I step back and think, would I have sent my records out? You were also very persistent with yours. My doctor was persistent with me. And I don't know if that I was in denial, definitely. I mean, obviously they tell me I'm gonna have open heart surgery and I don't even I know what it is, but I don't even allow myself to understand until I'm sitting in front of the nurse telling me. But yeah, once she said that to me, it was like, wow, okay, this is I didn't at that point she advocated for me from that point on. And I'm very, very fortunate because I don't know if I would have done that for myself until it was too late, which is sad. But it's hard to admit. It was it's hard to say this is what it is. And but I also have another condition that I was born with, and I'm fortunate of where it's at. It's hypertrophic cardiomyotherpy. So mine's at the tip of my heart, and they don't think when they went in to do surgery, they don't think that was part of it. They looked at it and said, I think we're good. They did some tests when they were in there. Said they might have to do more surgery if they felt like it was bad. They were able to do like a function type of test to see, you know, I guess technically it's a part of my heart that's dead. But that was not effective. But that also scared her when she saw that as well. So she actually was the one that found that. She found that because she ordered an MRI of my heart and some special MRI that showed angles that typically would show, maybe would not typically show, or be shaded. And so she was so thorough. I'm indebted to her and my actual primary doctor just because they were the ones that said this is not okay. And anybody who has said anything up to this point, we are disappointed. And yeah, yeah.

SPEAKER_00 40:13

Let's transition now from what got us to our surgery to where we are today. This is a perfect point to push pause as we shift from diagnostics to the steps in the process post-surgery. If you prefer, you can continue to listen to Veronica and Sarah sharing their experiences immediately by simply going to episode six. Otherwise, we're there when you're ready to hear the next steps in the journey. Thank you for listening to Imperfect Heart. It's my hope that this information helped in some way to improve your situation or will help you better understand this condition. More importantly, that it gives you hope through stories that there is help and you most certainly are not alone. If you've been diagnosed with a myocardial bridge, please be sure to join the private Facebook group, Myocardial Bridge Support Group. For more information about our program or to reach me directly, visit the website myimperfectheart.com. If you like what you heard today, please give a positive review, thumbs up, high five, whatever your app likes. And be sure to share with everyone important to you so they understand what it is you're dealing with. Please subscribe as well. Welcome each day with gratitude and positivity. Imperfect Heart is a production of Hear Me Now Studio.