Episode 11: Everything Doesn’t Always Go Perfectly. How Boots Knighton Handled Her Doctor’s Mistake.

SPEAKER_01 0:00

And I call the surgeon. It takes a couple of hours, but he gets back to me. And by then I had calmed down and we actually have an amazing conversation. And he is like, listen, that's not your problem, unfortunately. And I was like, WTF. And he's like, You have a non-union. And I was like, and he was, he, you know, he explained that the top of my sternum didn't knit together or didn't heal. And so it was likely slipping back and forth. And that's what was causing all the pain. But of course, he felt horrible about that. I let my rage come out. Like I talked to my therapist, I talked to my dad, my husband, and I even like called a lawyer because I was like, I'm gonna sue. But when we harm others or others harm us, it's just so important to give them that opportunity to say, I'm sorry, let me make it right. Because what it does for the healing journey is everything.

SPEAKER_00 1:30

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. Boots Knighton has been an educator since the late 1990s in all facets of education academics, ski instruction, even experiential education. Her greatest teacher, however, has been her heart, thanks to a surprise diagnosis in 2020 of multiple different congenital heart defects. She is now thriving after successful unroofing surgery on January 15, 2021. It was not without incident, though, and I thought it important to share some of the challenged surgeries that can and do happen on our program as well. Everything doesn't always go perfectly, and her story is one of those. Boots also has a podcast, The Heart Chamber, that delves into stories of open heart surgery and recovery to support the fact that heart surgery can be an incredible opportunity to begin again in life and live life wide open. So, Boots, welcome to Imperfect Heart.

SPEAKER_01 2:59

Thank you for having me, Jeff.

SPEAKER_00 3:00

I I am so excited to have you share your story because it's so different from the others that we've had. And I want to take a few minutes. If you would share with us your pre-diagnosis, what caused you to realize something was wrong? You're an active person, skier, outdoors person, you know, all the things that keep us healthy. And something triggered an awareness that it shouldn't be like this. What was that?

SPEAKER_01 3:32

Yes. So I flashback to 2018, I had a ski accident and sustained a traumatic brain injury. And I healed from that, but as I was about two, when I was about two years out, we started noticing a lot of breathlessness. And I was passing out. And we kept blaming, when I say we, me, my neurologist, my general care doctor, all started, we were all were just blaming the brain injury. We were thinking, oh, it's just autonomic issues, and I kept doing PT for it, and it wasn't getting better. And I had tried to go back to teaching skiing at Jacksonville Mountain Resort. I passed out on the ski lift there. I passed out when I was skiing, and it just wasn't adding up. And so then the pandemic hits and everything shut down. I'm working out in my house. I'm noticing more and more breathlessness. And then by early June of 2020, I'm on a mountain bike ride with girlfriends. I make it a fourth of the way up the trail and I start vomiting. And I was like, I can't breathe. My heart was racing. I was extremely fatigued. And so I turned around and went home and left them to do their bike ride. And I just thought, that is really strange. And then two weeks later, while on another bike mountain bike ride with my husband, that's when I really started to have all the symptoms of a heart attack. And we got to the top of this trail that we were riding. And by then I was like pushing my bike and holding my left arm and sweating. And he's like, What is wrong with you? And I said, I think I'm having a heart attack. And we've had all the training. We know what a heart attack is. And he was like, We gotta call 911. I was like, I am finishing this mountain bike ride. So I finished the mountain bike ride.

SPEAKER_00 5:39

And we're all this stupid. We've all done this. So many of us, whether it's even just pushing a grocery cart.

SPEAKER_01 5:47

The hilarious piece is I didn't go through wilderness response training once. I went through it twice. And I've had CPR. And I'm a bio, I was a biology major in college. I mean, I I didn't just fall off the turnip truck yesterday. And I'm still like 42 at the time, in the best shape of my life, have come back from this horrendous brain injury. And I'm like, there's just no way I'm having a heart attack. So we go home. Jason's like, okay, I want to take you to the hospital, and my left arm is killing me. I can't breathe. And I was like, well, we have to eat dinner first. And I need to take a shower. And by the time we got to the hospital, they didn't find the heart attack and the symptoms had started winding down. And there's some debate on if it was an official heart attack or not. What I care about is it finally got my butt into like the hospital and then finally in front of a cardiologist. But I still laugh when I think about that because it is amazing like how you can rationalize anything, like literally anything, including impending death.

SPEAKER_00 6:57

And I say it with almost everybody I speak with. We can't be having a heart attack. It's me. I'm fine. Whoever you are, it's not your heart attack.

SPEAKER_01 7:09

Right. It happens to other people.

SPEAKER_00 7:11

That's correct. So what happens next? What do you do? So you get in there and they do what?

SPEAKER_01 7:18

Well, they did all the standard stuff in the ER, and they're like, why the heck are you here? And what's happening to you? Like, none of it made sense. And they didn't find anything. They did all the blood work, they did the EKG, and everything was completely normal. But they did say they're like, something has happened. Something is happening. You we're not finding a heart attack. We don't have to fly you out of here tonight. Which, and when you go to the hospital in Jackson Hole, Wyoming, if you're having a heart attack, they immediately fly you to Salt Lake. And so I was glad for that because I was really not up for experiencing a life flight. And so they sent me home. They were like, please call the cardiologist tomorrow, which I had never been to one. I didn't know who it was. I mean, it was like they just tossed me out into the night into like, you know, a little dinghy with no oars and said, good luck. So there I was lost at sea. So I Google like a cardiologist at the local hospital and call and get in to see him. And here's where it gets even more ridiculous. He walks into the offices in early July of 2020. And he originally was at Stanford before he moved to our local hospital. And he's dressed to the nines. And he's like, Mrs. Knighton, what are you doing in my office? And I was like, Well, I'm wondering the same thing because none of this made sense. And I mean, I'd always thought I had a perfect heart. And so he was like, Well, we go for the symptoms and everything. He was like, Well, I'm going to go looking for, he mentions myocardial bridging and he explains what it is. He explains what it is. And he says, Well, this is what I used to work on at Stanford. And he says, I'm also going to look for a few other things that you hope I do not find. And so at the time, I had planned to go with friends to climb Mount Bora Peak, which is the highest peak in Idaho. And I was like, Well, can I still go do that? And he's like, I don't see why not. So we go climb Bora Peak against Jason's wishes. And the whole way up, I'm so symptomatic. And I can't feel my hands or feet. I'm breathless. The friends we were with were like, What is wrong with you? I don't tell them. I haven't told anyone what happened. And Jason's like, You're so lying to me right now. You are so not okay. You are so in trouble. I mean, the entire way up Idaho's tallest peak, I am having all these symptoms of heart issues. And I was just like the whole time saying, This is this is stress. This is anxiety. I'm not gonna die. I've got to get to the summit. And lo and behold, I get to the summit in like four hours, which is like incredibly fast. And I just want to say that, I'm not like bragging or anything, but it's like you can have something really horrendously wrong with your heart and still be like top level performing. And all of that gets extra confusing to the brain. So we get to the summit and we sit down and rest, and all my symptoms go away. And that's when I knew I was really in deep shit because I was like, oh, that's not stress anxiety. I was just really pushing my heart, and something is really wrong. And I'm now in like the wilderness of Idaho on the tallest peak in Idaho, and I have to get my butt back down.

SPEAKER_00 10:50

Good news is now down is less less stressful than going up, at least. The down is less stressful than going up.

SPEAKER_01 10:57

Yeah, it's I keep laughing about it because it's just so absurd. And I'm willing to to throw my myself under the bus here because we all, like I was saying in the beginning of our conversation, it's so easy to rationalize and deny and pretend. And all that does is potentially put you at risk of dying. So when I got back down, and especially the next day, my heart really was not okay at really effing her. And I called the cardiologist and he immediately got me in for a stress echo. And he was like, okay, something's really going on. And so he found that that I have a bicuspid valve. And but according to the stress echo, that wasn't the cause of my issues. And I was like, what the heck is a bicuspid valve? I'd never heard of it before. And I got no education about it. He just blew it off and said, Don't worry about it. And I was like, but this sounds really important. And he's like, but it's not causing your symptoms. And he blew it off. And we're now mid-July and of 2020. And then every day I'm getting worse and worse and worse to the point I can't wash dishes. And he had just climbed Bora peak in four hours, and now I can't wash the dishes in my kitchen. And I call him back, and he's like, Well, now we should do a heart CT. And we did. And that's when I learned about three myocardial bridges, and all the coronary arteries around my heart were hypoplastic.

SPEAKER_00 12:33

And I found the benefit of those not familiar, hypoplastic is too small.

SPEAKER_01 12:38

Like they're undersized. So I received the CT report on, you know, like your patient portal. And I remember where I was sitting, what direction I was facing. I was facing west. It was 7:30 at night. My husband and my best friend were sitting with me and we were having dinner. I knew where my cat was, my dogs were. I can picture it all. Like it was just like where your timeline shifts. You know, like there's these time stamps in your life. And this was like that event. You know, it was like the before and after, like, take the red pill or the blue pill kind of thing. And what was more upsetting was okay, he told me he was going to look for that and he hoped he wouldn't find it, the myocardial bridging. He called, he has his nurse call me the next day and says, He's not worried about it. You have anxiety, you need to be working with a therapist instead. And I told him that I had already been treated for anxiety. I was on anxiety medication, and I have a very good therapist, and I do not have anxiety anymore. And this did not feel like anxiety. And she still pushed back and said, No, this isn't your problem. You need to work with a different doctor.

SPEAKER_00 13:56

Wow.

SPEAKER_01 13:57

And I said, I can't breathe anymore. I can't stand and wash my dishes. Well, it's just really bad anxiety. So I thankfully I'd been like attuning my intuition for many years and learning how to like really listen to what my body is like telling me. And I thanked my brain injury for that. And I knew that they were wrong. And so, long story short, I found the Facebook support group for myopardial bridging, and that's how I found out about Stanford. And I asked this former Stanford doctor for a referral to Stanford, and he said no, that it wasn't appropriate. So I referred myself to Stanford, and they accepted me.

SPEAKER_00 14:47

Wow. Now you get into Stanford, and I'm assuming you go through Dr. Schnitker's whole protocol and Dr. Tremel for the provocative testing, and you're coming from Idaho, so it's not an easy hop, skip, and a jump every time.

SPEAKER_01 15:03

No, I arrived via a wheelchair. So here's the thing that was during COVID. So I found out about the support group in early August of 2020. It takes a while to like get Stanford's attention. I finally do. They finally look at my stuff. And then it was the last Friday of that September that Schnitker's office calls me and says, You absolutely have three bridges. We really need to see you, but we can't get you in until December because COVID. So I had to sit. I had to quit work. I was a teacher at the time. I had to quit my job and sit all fall into early winter, waiting to fly to California, which I did, I think that was like around December the 10th. And my husband's pushing me through the airport in a wheelchair. I mean, it was ridiculous. I was extremely disabled.

SPEAKER_00 16:03

You know, the the irony of that too is many of the people I speak with, some have had symptoms that they were unaware of, maybe through high school and minor, just the little situations that would occur and they go, Oh, that yeah, no, I don't know what that was, but it's okay, I'm fine. But once the symptoms start in earnest, it seems like it it's a tipping point. And absolutely as we know the compression of that artery, at some point it just doesn't rebound as much, then the compression even flows slows the flow more, and there you are in trouble. Because I hear your story, and you know, from June to July, and all of a sudden now you're relatively disabled in six weeks.

SPEAKER_01 16:46

And it happens so fast. Like and I just think back to that Mount Bora day, you know, and the mountain bike the two weeks prior to that. And it's just a I think I was just in such shape, like athletic shape, that I think I and I know like that breathlessness all spring, I was just it was my athletic abilities were clouding the impending serious situation, right? So, and you know, as I was packing to go to Stanford, Donna, the nurse, called and just confirmed everything. And of she's so wonderful. And she called and said, We're so excited to see you and meet you. And my surgery was already scheduled. They kind of already knew I was a candidate.

SPEAKER_02 17:32

Oh, wow.

SPEAKER_01 17:32

And then an hour later, she calls back and she's like, never mind. And what had happened was their ICU had filled up because of COVID patients. Oh in the hour since we had talked, she said, we can't do your surgery if even if you do come. We have no ICU beds. But you should still come because the next time we can do the provocative testing is in May of 2021.

SPEAKER_00 18:00

Oh my gosh.

SPEAKER_01 18:02

And I knew I would not live. Like everything in my being was like, you will not survive until May. And so I just needed to take some sort of action. Like I just couldn't sit any longer. And so that's why we still went to California. And we went through all the bit of testing that everyone experiences, except I also had like my nose excavated because there was like so many COVID tests.

SPEAKER_02 18:27

Yes.

SPEAKER_01 18:28

I don't know if I did not know it was that possible to have that many nose swabs in five days. It was a scene out of like some zombie movie. And so here I arrive in the thick of COVID before the vaccine. It just made what was already a 10 out of 10, as far as like scary, severe horribleness. And after everything, they were like, you really need surgery, and we really cannot help you. You have to go home now, back to Idaho, and we'll maybe call you in March.

SPEAKER_00 19:01

So what did you do?

SPEAKER_01 19:04

So well, after I cried, and we went to the beach and like felt our feelings about the whole thing in California before we got on. I thought of the Facebook group and I got on the Facebook group and I found that one of our part warrior friends in Utah had found a doctor hiding in plain sight at Intermountain Hospital just south of Salt Lake. And I quickly message her. She quickly gets back to me. She was like two days out from surgery, and I call his office on the way to the airport, and they were amazing. And by the time we landed at home, the office had already transferred all the Stanford materials to them. And the surgeon had already looked at everything and agreed to do my surgery, but we wouldn't talk until January the 5th, 2021. And then he unroofed me 10 days later. What I found my surgeon on Facebook.

SPEAKER_00 20:10

A little different Facebook, but nonetheless, yes, you did on Facebook. Yeah, what a and what a miracle, huh?

SPEAKER_01 20:17

I mean, to think I I need to make a bumper sticker out of that. It is just so jaw-dropping, the whole thing.

SPEAKER_00 20:25

Yeah. And you know, I want to go back just as because you said heart warriors, which is a term you used on your podcast, which I mentioned in the introduction, but uh again, the heart chamber, and you tell the story in depth there for anybody who wants to listen a little bit more and hear the details of it. So let's go now fast forward post-surgery. So you had it done roughly January 15th, 2021. I'm, by the way, just a year after you, still in COVID, not quite as severe COVID, but knowing nobody in the hospital, you've got to go in and do it all by yourself, and your wife has to sit somewhere else and family and friends can't come. But I was January 4th, 2022. And and and funny, that's so many of the people we've spoken with, they either are diagnosed or have their issue or incident that is the tipping point. June, July, August. Everybody so far that I've spoken with is in that window. Go figure, huh?

SPEAKER_01 21:24

So all northern hemisphere, right? So it's all I'm just wondering if it's heat related. Is there an effect of summertime temperature, humidity on the arteries?

SPEAKER_00 21:36

Don't know. Don't know. We'll leave that to Stanford to figure out and do the research on. Come on, Dr.

SPEAKER_01 21:41

Schnitger, do your magic.

SPEAKER_00 21:43

That's right. That's right. So now you're you're unroofed. And amazing that you would have three actually three bridges. So you're home and you did a sternotomy, and I would imagine. And at that point, it wasn't even a question of, oh, am I going to do astronomy? Can I look for a robotic? At this point, you just want to get this thing done and taken care of because of the severity of it.

SPEAKER_01 22:08

Yeah. And tell him I did ask my surgeon about that. And beforehand, I asked him all kinds of like questions, like why I I told him, I said, I'm very, I'm very special to my mom and dad and my husband. Why should you be the one to operate on me? And I just want to encourage all your listeners to ask the same question of your surgeon. Like, you are hiring them to be on your healing team. You are the CEO. And that was one big lesson I learned at the towards the beginning. That I like shout from the mountaintops now. It's like, you are the CEO. You are in charge. No one else.

SPEAKER_00 22:49

Correct. And your body is your company, and it's the biggest company in the world to you.

SPEAKER_01 22:54

And well said, I love that.

SPEAKER_00 22:56

Well, and self-advocate. And everybody that has been on our program, and I'm sure many on yours as well. If you don't, the best outcome for you is not going to happen. You really have to self-advocate. You have to dig, you have to do your homework. You have to ask a lot of questions. And I think that's a great question. I love the way you phrase that.

SPEAKER_01 23:20

So yeah, it well, what it does is it like it takes maybe more like the more professional side out of it and takes the doctor out of doctor mindset and puts the doctor into human mindset. Right. Like, oh, you know, this is just another soul I'm operating on. And he appreciated that question. It was ended up being the best situation because of the since I also had the bicuspid valve, he's actually spent time looking at my bicuspid valve while I was under and really inspected it. And then when he sewed the myocardium back up, he sewed it up in a way that, like, should I need that bicuspid valve replaced, it should be a slightly easier surgery on me. Something about how he cut open the myocardium and sewed it back. He also told me that because he had inspected it, his main like focus is aortic bicuspid aortic valves. And he thinks that I may be one of the lucky few who gets to keep mine my whole life.

SPEAKER_00 24:22

Wonderful.

SPEAKER_01 24:23

Crossing fingers.

SPEAKER_00 24:24

Well, you've got enough other one heart surgery is enough. Yeah, I was just gonna say you've got enough other things going on with that that you don't need another another complication.

SPEAKER_01 24:31

Right, right. So he also said in my surgery to speak to the hypoplastic arteries. So I'm kind of hypoplastic. I'm I'm extremely small. So I'm only five pounds or five, not five pounds. Oh my gosh, I'm only five feet tall and I'm a hundred. And so he said, because I'm so small that the small arteries are not a problem. But if I were any bigger, it would have been a major problem way sooner in life.

SPEAKER_00 25:03

So you get home and how do you feel?

SPEAKER_01 25:07

Amazing.

SPEAKER_00 25:08

You noticed it right away.

SPEAKER_01 25:10

I noticed it when I walked from my ICU bed up to the PCU floor. Very few people walk after surgery, and I wanted to walk. This is 24 hours post open heart, and Jason has video of it. In my mind, I was so fast.

SPEAKER_00 25:30

Yeah, right. Yeah, we all think we're killing them when we get up. Look, and I'm you've never seen anybody like this, have you, right?

SPEAKER_01 25:42

I I mean, I was so lightning fast walking from the ICU. I'm pretty sure any snail that had been on the hallway that day would have passed me with flying colors. But I know I felt really amazing and I continue to feel amazing. And I mean, it was such a wonderful recovery for a while.

SPEAKER_00 26:04

And that's where I want to get, you know, for a while. For a while. You know, and then what? Yeah.

SPEAKER_01 26:12

And then what? Yeah. So, well, my mom died nine weeks post-open heart surgery. Oh, yeah. And I'm an only child. And it was across the United States on the coast of South Carolina from where I live. And it just was not helpful for my healing. And then I come back and I try to go back to my teaching job, and I start to notice that my right arm keeps getting zinged by something. Like I kept feeling these, like these electrical shocks going down my arm. And it took until about late April for all the swelling to really go down completely from the steronomy. And that's when the wires kind of started to poke through and say hello. And I called my surgeon in mid-May. I just it got to the point I couldn't take it anymore. And I called him up, and they're and he got on the phone with me, and he's like, I was afraid this was gonna happen. So basically, because I'm so petite, uh he said, you know, petite women have a harder time keeping the wires, and I have no fat to cover them up, and so they had to come out. So in early June, I had them extracted, and then the summer kind of starts to roll through, and I'm I'm battling, you know, obviously I'm grieving the loss of my mom. I have the cardiac blues, I absolutely had those, and I write about them. It's interesting. The cardiac blues hit when I was in the hospital. I went back and read my journal the other day in preparation for our visit today, and I didn't, unfortunately, I didn't get specific about it, but that was a big piece too. And I I was taking medications already for anxiety and depression. And my surgeon warned me that cardiac blues are a thing, and I'm such an open mind to mental health. I've been working on mental health for years, so I wasn't afraid of it, and I wasn't afraid to say I had it and I have a good therapist. So I'm dealing with all that throughout the summer and having to re-heal the scar. That was such a bummer to have the scar open again. And I'm noticing the pain is getting worse and worse, but in a different way this time. So I wasn't getting electrocuted in my right arm as I was describing with the sternal wires. And I call my surgeon back and I'm like, I know y'all are probably sick of me, but something's still not right. And they're like, let's order a CT scan. So they called my local hospital and got the CT scan going.

SPEAKER_00 28:58

Thinking it might be the heart.

SPEAKER_01 29:01

Yeah, we're just not sure. I was going to the gym and getting my heart rate up, and everything was okay. So we weren't really even worried about the heart. I just had more like structural pain. And so I'll never forget this. I'm laying in the CT machine, and you know, the CT guys were like, Hey, why are you here? And I said, Well, I had all the wires taken out, but I'm still having pain. And so they're like, Okay, we'll take a look. And they come back and we're like, So you said you had all the wires taken out, right? And I was like, Yeah. And they're like, Okay. So they go back into their little room and do do some more imaging. And then all of a sudden the radiologist is standing over me. And he was like, Mrs. Knighton, I have some really uncomfortable news. And we're all wearing masks, right? So I can't see anyone's faces. And and he's like, You still have a wire in you. I had nothing to say, and usually I can laugh or swear or something. And I I remember I just froze. It was so beyond my comprehension of understanding. Cause I was like, but wait a minute, I had surgery for that. And he and these there's three men, this the radiologists and the two techs. I thought they were gonna cry. Like they were devastated for me. And I'm still not saying anything. And he was like, Listen, I can tell you're shocked. And he's like, get dressed. I'm gonna bring you back to my little cave, or usually patients can't go and I'm gonna show you. And he did. So he brings me back. And darn if there's not a little bit of wire that had broken off into in my sternum. And and so I go through the typical and appropriate emotions about that, the rage, the disbelief. I may have sworn enough for an entire lifetime. And I call the surgeon. It takes a couple of hours, but he gets back to me. And by then I had calmed down, and we actually have an amazing conversation about it. And he is like, Listen, that's not your problem, unfortunately. And I was like, WTF, what do you mean? And he's like, You have a non-union. And I was like, who, you know, all this like, I'm still, I swear, every time I turned around, I was in medical school all over again. And he was, he, you know, he explained that the top of my sternum didn't knit together or didn't heal. And so it was likely slipping back and forth, and that's what was causing all the pain, and that it probably wasn't it, it wasn't that little tiny bit of wire that was stuck. But of course, he felt horrible about that. And that this is like something I want to share with listeners. It's I I let my rage come out. I talked to my therapist, I talked to my dad, my husband, and I even called a lawyer because I was like, I'm gonna sue. So, you know, I went through like 24 hours of all the necessary emotions. I let them just rise and could flow through me. And then I arrived at this place of compassion because I this doctor is so amazing and he's so kind and humble and filled with grace. And he had made a mistake. And I had two choices. I could sue, but what would that mean? Who, who would that help? My pocketbook temporarily, but that was about it. And it would affect how he did his work, it would affect my help, my healing in a negative way, because I'd be holding on to this resentment. So I chose love and I chose forgiveness. And when he called and to talk to me about it, he said, Listen, I know you probably don't ever want me to touch your body again, but I appreciate the opportunity of fixing my mistake. So I let him. And then he also put in a titanium plate at the top, and I got to choose my favorite color, blue, because that totally matters because no one's ever gonna see it. And then I got on with my life. But I, you know, I had to like grieve getting cut for a third time and I had to grieve the horrific pain because it was a tough recovery. Having anesthesia three times was not awesome. You know, it was not great, but he paid for the surgery, he paid for a hotel room, he paid for our gas to get back down to Salt Lake, and we hugged. It was amazing when we harm others or others harm us. It's just so important to give them that opportunity to say, I'm sorry, let me make it right. Because what it does for the healing journey is everything.

SPEAKER_00 33:51

Yeah, I agree, and I'm so glad that you addressed it the way you did, because there's obviously many people who are not even to the point of processing the bridge yet in the mental state of I've got this now, what do I do? And all the anger and the discomfort and frustration, it just builds and builds and builds. You may not even know you have the bridge, but you have this thing that you know something's wrong and nobody's diagnosing you properly. And then finally you do realize, and you can go a couple of different ways. You can be all frustrated and angry about it, but you have it. You were born with it. It wasn't something you did, you didn't cause it, and it wasn't intentional. So now accept it and move on to the next step and prepare. And I I I applaud you for the way you address that. That's it's not easy. It's not easy when something goes wrong, and there's actually somebody who's accepting the responsibility for it, so there's your point of blame you know, if you choose to go that route, but it's not going to get you anyplace.

SPEAKER_01 34:54

No, it doesn't. And it doesn't serve at all. No one's high as good as served.

SPEAKER_00 34:59

And I think what's really encouraging in the discussion is the heart's fine. The unroofing process worked. You're not debilitated by that. It would happen to be something else that was the structural part of it versus the heart. And to to the you know, find the positive in that story, there's just great value that at least it's not that, and you're not dealing with those issues. That's not a life and death issue with a you know a sternum, and it's correctable.

SPEAKER_01 35:29

So it was a minor surgery. It was considered minor. I went home the same day in and out.

SPEAKER_00 35:37

A beautiful blue plate that if it ever does, you can say, That's my blue plate. Don't worry, it's a blue plate special, it's in my chest.

SPEAKER_01 35:43

I never have an opportunity to shut off.

SPEAKER_00 35:46

So here we are now, almost two years later. Where are you? How are you?

SPEAKER_01 35:55

Well, I've taken up rollerblading and I love it. Although I've still not gotten out this year because winter went on forever and then it doesn't seem to stop raining now. And I now ski for me instead of for work, and that's really quite the concept. I'm really enjoying not being in charge of other people's ski vacations. But a really interesting thing has come to light. So last May of 2022, I was I was not feeling good and I was having a lot of cardiac symptoms, and my cardiologist could not figure it out, my local cardiologist. So she sent me to Mayo Clinic in Rochester. I went there in July. They did all the time. Yeah, I'm very fortunate. Yeah. Like it's, you know, and to be at Mayo, it was really great to see like how healthcare should be done. But they too were like, we're not quite sure what's causing these symptoms. And so they prescribed me joy, J O Y. I'm not kidding, and sent me home.

SPEAKER_00 37:07

So J-O-Y.

SPEAKER_01 37:09

So yeah, joy. They literally prescribed me joy. They were like, we don't know what's going on. And I did leave. There were some other tests they wanted to do, but by then it'd been like 10 days, and I felt like a pen cushion at this point. And I was like, I have to go home. And long story short, my nutritionist, who I interview for my podcast, is an amazing episode, episode three, which I highly recommend everyone listen to, does an inflammation test on me. And it's like poltergeist and lab results. No wonder I was feeling so bad. Like you name it, it was inflamed, like all these different cytokines. And she was so freaked out. She calls her Lyme disease doctor that she knows in Connecticut. And this doctor's like, oh my gosh, you've got to, you might have Lyme. Long story short, I am now working with a naturopath doctor in Bozeman, Montana. And we don't know yet if I have Lyme, but I definitely have biotoxin illness and were starting to treat me as if I either have Lyme or have been exposed to mold or something like that. And what I've learned already is 24% of the US, or not the US, I think just general population, have a genetic predisposition to reacting to Lyme or mold or other toxins in the environment. I'm wondering if in my workplace environment, if I was exposed to something there as far as mold. And all it does is it takes one little bit of exposure after a traumatic event to then go into this major inflammatory response. And then I got COVID for the first time this January 2023. It was that bad. And we think that kicked off the cytokine storm that's causing like this this snowball effect in my body. And so that's where I'm at. Oh, there's so much good news.

SPEAKER_00 39:22

It's really not the heart. Exactly. You are still functional, so that's good, and you actually have control of it. And we're going to go back to the conversation we had a little earlier, self-advocacy. Don't stop. And I agree with the nutritionist input, which is an episode we'll do at some point in the future once we get past all the doctors. And mental health, nutrition, just general well-being is so, so important. You can't just go back to the way things were and expect everything to be the same and or perfect. And I I think your story is just one of those wonderful, undulating experiences where we hear the success stories that where it's just everything's good, blah, blah, blah, and and that's great. And that's what we all hope for. But we also need to hear the others that have struggles. The good news is it's not their heart. It's everything around it that is as a result of the heart and the surgery. And life happens. Stuff happens. And we don't get to control that, but it's how we deal with it. And you have really grasped a lot of the things that are critical pieces of it. The mental health issue is such a big deal. And you're right, cardiac depression. The majority of people have a heart attack. There's a depressive period behind that. And you've dealt with that beautifully. You were already dealing with it. So you came into it with support. And then to identify the the nutrition value, I think that's going to be great for people who are listening who are struggling with something that they know just isn't right. And maybe mental health is good and heart's good, physically good, but something's just not right. There's a place to look. And we overlook that often. I eat well, I'm doing everything fine. That doesn't mean that you can't have inflammation, which is so many times a cause of an issue.

SPEAKER_01 41:26

Right. And you know, Nurse Georgie, my nutritionist, she taught, we talk about what would be the dream case, like the dream scenario of going into surgery. And you know how we do all that, we had to do all that blood work to get ready for surgery to make sure you wouldn't die. No one checks for inflammation, no one checks your vitamin D, your B levels, magnesium, right? Like well, maybe they check magnesium.

SPEAKER_02 41:50

Magnesium, right?

SPEAKER_01 41:51

Yeah, but they don't check for inflammation necessarily. And I there's just no way any of us came out of open heart surgery without some level of inflammation. And we just can't be too careful. And going back to the Mayo's prescription of joy, it's a little silly, right? In one way, in one sense. But here's the thing: this is how I've run with it since then. Choose joy even in the deep valleys of darkness. Live life even though I feel like shit some days, right? Like go skiing anyway, go rollerblading anyway. Right? Like, I'm tired right now because I've started this biotoxin binder pill and it's kind of kicking my butt. So today I did yoga, but do it with joy because there's people who still who can't do yoga anyway. There are still, you know, like we have a choice in every day of our life to choose our attitude and to choose our perspective. And I've learned to look at each situation as what is it doing for me instead of what is it doing to me.

SPEAKER_00 43:06

Right. And I use the same phrase, I just reverse it so often. You know, people go, Oh, God, look what happened to me. It didn't happen to you. If you look at it with the right perspective, or at least from my perspective, it happened for you. Now what do you do with it? Because it's happened. You can't reverse it. It is what it is. I mean we we have a scar to prove it. But whatever that situation is, uh learn from it and take it forward. And and I love the attitude and perspective. There's uh Charles Swindell has a a wonderful five oh maybe four or five paragraph piece on attitude. And it is the one choice you get to make every day, is how you're going to accept things. I I love that you're in that space. Before we wrap up, after all of this, you decided to take on a project. And that process, I think we both started at about the same time for the exact Exact same reasons. Tell us a little bit about that share with us so people know you know how to get to you, how to hear what you're doing. But if you would, I would appreciate that.

SPEAKER_01 44:09

Yeah. Thanks for that opportunity, Jeff. So I started a podcast. It came to me last fall, November the 5th at noon on a Tuesday. I remember exactly, like it felt like existential. Someone whispered in my ear, start a podcast. And it like had not been on my radar. I'd written a book already. It's still in rough draft form, but I'd written a 94,000-word book on my heart surgery and losing my mom at the same time. And I thought that was gonna be what I do. And then this existential, yeah. Then this existential thing was like, hey, podcast. And then two months later, January 31st, I released my first episode. And you were my very first person I interviewed. You came out in episode four, but you were my first interview ever. So thank you.

SPEAKER_00 45:04

Absolutely my pleasure. And you did a great job, by the way.

SPEAKER_01 45:07

Oh, thank you. And so my podcast, I named it the heart chamber. And credit to my dear friend Denise Hardy, who helped me come up with the name. I did 20 episodes in the first season, and it included myocardial bridging, caregiver, some of the healing team that I've hired to help me heal, and then some heart transplants. It's some other congenital defects. I still can't believe I did 20 episodes. And I do plan on doing another season. And I'm not exactly sure when it will start, it will be in the fall. I need to focus on my healing for a little bit longer before I can give myself back to the podcast deal.

SPEAKER_00 45:50

So as you think of all the things that you've experienced to date, if there was one thing that's most significant that you would like to leave the audience with, what would you say?

SPEAKER_01 46:04

I play this moment in my mind every morning when I meditate. It was the five minutes before surgery, before the open heart surgery. And I was I had signed the consent forms and I was laying in the hallway outside the OR, and the sun was just rising in Salt Lake. And the Wasatch Mountains were the purple mountain majesty that we hear in our national anthem. It was the most jaw-dropping purple. And I'm looking at it, and I mean, it could have gone either way. Like they were putting me on the heart and lung machine. There was a lot of like heart muscle Dr. McKeller had to like cut into. And he said the chances are very slim that you would die, but there's still a chance. So I was like, well, okay, if this is my last time seeing mountains, this sure is a gorgeous last time. And I started just kind of running through like, do I have any regrets? But here's here's the thing. I've been focusing more on lately was not what I was thinking about, but what I was not thinking about. So here I'm at the brink, and I'm just thinking about skiing. And I want to ski more and I want to be of service and write a book. That was it. I wasn't worried about the money I had. I wasn't worried about was I loved or not. I knew I was loved. I knew I was cared for, I had all my needs met. I was not worrying about errands or if this person liked me or if I had enough followers or whatever the heck people genuinely worry about on a day-to-day basis. None of that mattered. That was just it all fell away. I was more about how can I help and how can I experience life to the fullest extent should I come back from this. That was it.

SPEAKER_00 47:59

I think that's a great way for everybody to understand and accept the next steps of whatever those next steps are post-diagnosis. Because really what's important isn't the material stuff. And I think we all realize that after that happens.

SPEAKER_01 48:14

I guess I could sum it up as I'm I I guarantee you what you think matters probably really doesn't matter.

SPEAKER_00 48:22

Well, Boots, thank you so much for joining me. You know, a continued healing too. I the fact that you've taken this initiative to just continue and continue and continue to progress is uh it's it's just astounding and and and not give up and just keep going to get to where you need to be. And I think a lot of people can learn from that that recovery is not overnight, it's over time.

SPEAKER_01 48:50

And I can only tell you all of the story today with the humor and my nervous system isn't getting activated. I can only do all of that because I have a therapist and a loving husband and friends. Like I have leaned, I've asked for help and support because I knew I could not get through this alone.

SPEAKER_00 49:12

Brilliantly said. People listen to the heart chamber, check it out. You're gonna hear some very interesting stories, some different stories. You know, maintain that sense of humor. It's it's wonderful to hear and the positivity.

SPEAKER_01 49:25

Thanks so much for having me, Jeff.

SPEAKER_00 49:26

Thanks, Boots. 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. The views and opinions expressed in this program are solely those of the host and the guest and are not intended to provide, nor are they a suitable substitute for professional care by a doctor, therapist, mental health professional, or other qualified medical professional. Imperfect Heart is a production of Hear Me Now Studio.