#1 Boots Knighton tells her story with the help of her friend, Mary Olson.

While on a mountain bike ride on June 26, 2020, Boots felt all the symptoms of a heart attack. Refusing to believe it was happening, she kept going and insisted on finishing the ride. After an ER visit, seeing a cardiologist and even climing Idaho's tallest peak, Mt Borah, Boots finally learned what had been lurking in her heart since birth.

The road to get to open-heart surgery was long in every way and filled with obstacles all during the pandemic. Now, Boots is thriving and is so excited to launch this podcast in hopes of helping others facing open-heart surgery.

Website: The Heart Chamber (theheartchamberpodcast.com)

Transcript: Joyful Beat | The Heart Chamber (theheartchamberpodcast.com)

The Heart Chamber (@theheartchamberpodcast)

Thanks to Michael Moeri for being my right hand man. Michael Moeri - Audio Editor, Podcast Producer and Marketing Director

Thanks to Denise Hardy for your support and believing in me. linkedin.com/in/denise-hardy-30a51086

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ready for inspiration, A lesson in cardiology and a Dose of Hope. Welcome to the Heart Chamber, patient Stories from Open Heart Surgery and Recovery. And I'm your host, boots Knighton.

Oh, hello. Welcome to the Heart Chamber. My name is Boots Knighton, and you are joining me and my friend Mary for our very first episode. We are so excited today. I asked my friend Mary Olson to join me because I've learned that you don't have to do hard things alone. And starting a podcast felt very hard, but very right, and I knew that I just didn't wanna speak into the void to all of you listeners.

So I asked my friend Mary to help me birth this podcast. So please welcome my friend, Mary Olson. Hello Mary.

and

Boots Knighton: happy to be here.

Thank you. And Mary is joining me from the state of Washington and Mary and I have been very dear friends for, gosh, almost 16 years now. I like to say I'm married into the relationship. Uh, she and my husband and, and her husband Chris, are very close. And the first time I met Mary, she actually took me wedding dress shopping, and now she's helping me birth my podcast.

And my hope for this podcast is to provide a nugget or more of comfort for all of you listeners and also for caregivers because it is no joke for caregivers, as I'm sure my husband would attest.

so I am originally from Edenton, North Carolina.

It's near the outer Banks of North Carolina. And at the time of my.

But I found that I had to travel to get quality healthcare, and my hope for you, the listener, is that I can make even that process a little easier, not only through my story, but through other stories of other patients that I have planned to come on and share their stories.

Mary Olson: Love it. So, boots, you have, been through so much more than just heart surgeries in this journey. having followed along through the years, I can tell you not to, not to give a spoiler or too many spoilers, but there's been, this sort of journey and this tale has everything.

let's talk a little bit just about how you wanna structure this, and, and kind of go through it.

Boots Knighton: Okay. Great. Thank you. Yeah. So I want to tell you the story in chronological order. it's a little long. I promise it's worth hanging on till the end, and I'm gonna walk you through the physical parts, but then I want to walk you through the emotional and spiritual side of things as well that I don't think the medical community is well equipped to help patients with.

they tried with me, they tried to give me a little snippet of what, what I should expect, but I really feel like if you're willing to like dive in and get really courageous and really get comfortable with sitting with yourself and being comfortable with boredom and stillness, there's a lot that you can gain from having heart surgery.

And the perspective I have now is, I'm still working on finding the words for it. But I can tell you that once you've been through heart surgery and you get to the other side, you realize that anything that you ever used to be upset about just doesn't matter. And it is. Such a superpower of mine now to be able to be in the present moment and the gifts of that are just endless.

I don't even think I could have gained this superpower of being in the present moment from her heart surgery. Just has a way of doing that for you. But you have to let it, and I think that's the biggest piece is like, I was willing to let this heart surgery. Change me and mold me the way it was meant to.

I really leaned in and got extra cur curious on what I was supposed to learn from this. And I can tell you, as hard as it was, it, it has been worth it.

Well,

Boots Knighton: issues. Okay. So , well, back in 2018, I had a really bad ski accident and I hit my head.

We felt like the brain injury was over. I really felt like I was good. In fact, I was the strongest I'd ever been in my life. I was really on top of my game. And so my coach and I were like, what is going on with the breathlessness? And by June of 2020 and remember, COVID is raging and it's just a crazy time for humanity.

both our mothers had been diagnosed with cancer. my husband, Jason, his mom had been diagnosed with breast cancer and my mom had been diagnosed with rectal cancer and my car engine had blown up all in like the span of three days. And so we were stressed and we went for a walk to just chill out.

But I had the pain down my left arm. I had the elephant on the chest that you hear about. I was nauseous, I was sweating. I was being stabbed between my shoulder blades, and I just walked slower and slower and just was thinking, this is stress. This is stress. We get back home, I immediately lay down. I still don't say anything to him and all the symptoms go away.

And I'm like, yeah, see, it's just stress. So then the next day we go on a mountain bike ride. and it was a pretty hot day for June and we are starting to bike up this hill. It was beautiful. I was surrounded by a mahogany forest in the big hole range of, eastern Idaho. I could see the Tetons. I mean, it was just an amazing day and I felt like crap.

And I said, I think I'm having a heart attack . And he was like, what? And I'm like, sweating and like I can't feel my left arm. And by then we were almost to the top of the climb and he was like, we've gotta call 9 1 1. What's, what's this? Blah blah, blah, blah, blah. And I was like, no, we're almost to the top.

I'm sure I'm fine.

And so me, and were actually both wilderness first responders and he used to work. Search and rescue on like Rainier and Denali, and he's been on ski patrol and he's like, no, we need to do something. And I'm like, there's, this is just really bad stress. Think about our week. And so we get to the top and I knew that the, the downhill part was gonna be sweet.

I cook dinner, I take a shower. , I'm still having heart attack symptoms. And he was like, this is insane. We are going to the er. And he calls a doctor friend. And the doctor friend was like, why are you still at home? Yeah. So we go to the ER and I'm like, this is gonna be the most expensive. You have anxiety bill ever.

And we get there and they're like, okay, so we're not finding a heart attack. And of course they took like blood work and did the E K G and everything and chest x-ray and they're like, we're not finding a heart attack, but it really does seem like you're having a cardiac event. You need to see a cardiologist.

Mary Olson: I was just gonna say, I think there are statistics that first responders and doctors and anyone trained in medicine are the, the last to admit they're having a heart attack and take I'm sure.

Yeah. .

Boots Knighton: Yeah. So I mean I, and of course Jason couldn't come in cuz it's Covid and they had to do a covid test on me and it was just, covid just made everything seem so much more stressful. Right. And so, two hours later I'm back in the car and we are just like beat down and made an appointment the very next day to see a local cardiologist and.

And so we start walking through all the symptoms and he's like, well, we need to do some investigating. And so, you know, I'm gonna go and look for bicuspid valve, I'm gonna look for myocardial bridging. I'm gonna look for, all these other different things. And we're gonna need to do like a stress test and then probably a heart ct.

at this point, my brain is about to explode because I had not heard of any of this. Jason and I had made plans to go climb Mount Bora, which is Idaho's Hollis Peak with two dear friends of ours. And so I asked the cardiologist, I was like, well, what do you think?

Do you think I can still do this? He's like, I'm sure we're gonna end up not finding anything.

So we drive, it's like a six hour drive and we go with our friends and we start, you know, the morning of this really, and, and to, to get the listener being able to picture Mount Bora. It's a very steep four miles to the summit. And, I'm kind of forgetting now, but it's like, almost like 5,000 feet of vertical gain.

And it's tricky. Hiking and climbing. Yeah. Yeah. you just don't go walk through a park. It is, you know, exposure, hands over feet at times. We didn't use ropes, but most people usually do. And so here I go. You know, unbeknownst to me, I really had had a cardiac event and now I'm gonna walk my butt up the Idaho's tallest peak.

So I was like way behind really enjoying the flowers. But, just dragging myself up the hill. And at one point we'd all take a break and I lay flat and my friend Greg says to me, he's like, my gosh, Suzanne, he, he calls me Suzanne. He is like, please don't, he says something to the effect of like, don't have a coronary on us.

Cuz he could just tell I was really struggling.

It is such a spectacular peak and when I really was able to accept that something was wrong was when we started coming back down from the summit and all my symptoms went away and I felt good as new and I've now later learned that, you know, I was no longer putting stress on the heart cuz it's easy cake walk just going downhill.

And so I pulled Jason to the side and I was like, I'm in deep shit. Like I am in really deep shit. And he could see that like all the symptoms, like I wasn't, you know, pale anymore. I could feel my hands again. And I was like, we're calling the cardiologist right when we get down. And by the next day the symptoms were so profoundly severe.

I was like, we need to figure out a way for Jason to be able to come with me. And he was able to, and the first thing they immediately found was the bicuspid valve. and it was really interesting because the stenographer who was doing the, or sorry, the stenographer, not stenographer, who was doing the initial imaging of the heart, he said it to me, he's like, you know, the doctor is gonna mention this to you.

so be prepared. But he's like, it's looking good. And meaning there was no stenosis, there was no, leaking. There's a lot of problems that can go on with, bicuspid aortic valve. and, and then the cardiologist came in and confirmed that. He was like, that was one thing I was concerned about.

And so I had to wait until July 29th for that, and on the 30th the results came in. And I remember where I was sitting. I was sitting outside of my house enjoying a dinner with another dear friend of ours and Jason, and the results come in on my portal. which I, I, and I encourage all you listeners who are going through hard things like this to keep track of your health portal with your hospital, because that ended up being how I advocated for.

So as I was reading this, radiology report about my, uh, ct, it mentioned myocardial bridging and that's another thing that the cardiologist was concerned about. The other thing it mentioned besides the bicuspid valve also was that all my arteries were undersized. And that was a lot to take in. And so basically a lot of what he said, he was worried that he would find, he found.

It's so fascinating. I can, I feel it all just as like as if it's happening again, it's like I think we all just have this like constant drip of hope running through us every day because we get up in the morning, hopefully everyone that's listening, we're all fed, we're all watered, you know, we are cared for and loved.

You likely just need an anxiety medication. And even though he said he was looking, and yes, my bicuspid valve is still okay, I'm gonna, you know, have it monitor the rest of my life, I might need another open heart surgery. But he, he was right about that. But the myocardial bridging, he was very wrong.

And it wasn't just anxiety. And that's when I experienced my first true medical gaslighting by a doctor. And what really killed me about it was this man had trained at Stanford University and. Where like they, Stanford University is the place they are doing the most like research on the effects of myocardial bridging on the heart.

Mary Olson: So this, and, and this was a local, this was somebody local. This is the, as soon as you pick it into local available. Yeah. Yeah. And, and so then, you know, so where do you go from there? Once you get that, it's not, it's not in, in, in harmony with what you know was going on with your body, what you're seeing in the test results.

Where do you go from there? Mm-hmm. ,

Boots Knighton: well, I continued to try to rationalize with myself. Maybe he's right. I mean, I really went through this period of I'm losing my mind which is classic gas gaslighting, because I was getting more and more breathless. Jason could see it, friends could see it. I was getting to the point, I couldn't even take a mile long walk.

He was like, that's okay. He even had me drive down to Salt Lake. In fact, I couldn't even drive by this point for very long distances. So a another dear friend drove me down for a nuclear stress test on my heart. And they, they stressed it, but not in the way that would show that a myocardial bridge is causing problems.

And so, they too were like, nothing's wrong with your heart. And I was like, I cannot breathe. When I move, I feel I'm having chest pain. And at the time I was also having something called a vasospasm, which I knew nothing about. And I was starting to really suffer from endothelial dysfunction.

And so my l a D artery and my L C X arteries had tunneled into the heart and for quite long distances. I think my L C X was almost like four centimeters. And my L A d I, I'm, I'm kind of glad, I can't quite remember, but it was at least three to four centimeters and it was almost into the ventricle of my heart, so it was also considered deep.

That's what happens with arteries. So they're squeezed and my arteries at that point have been squeezed for 42 years with every beat of my heart. And they finally gave out because, uh, the endothelial cells that were lining the arteries were like, we've had enough, we're going on. Strike . Yeah. And so it that, and that's what causes heart attacks because it cuts off the blood supply long enough to the heart and it causes heart damage.

And so, You know, that's what was happening with me. I developed severe endothelial dysfunction, so my arteries weren't even, opening properly. and I was having vasospasms, which feels basically like you're being electrocuted in the heart over and over again, or hit by lightning in the heart.

I don't know, we could call it an angel, a guide. could have been my cat, I don't know. But, Look for a myocardial bridge support group on Facebook. And lo and behold, if there wasn't one and that Facebook group saved my that's the spoiler alert, and I will be, listeners, please continue to come back every week because I'm bringing other folks on from various Facebook support groups for various heart ailments who have found hope and healing through social media.

And so I got in touch with a few people and I realized I needed to get to stand for university. And so I quickly contacted my local cardiologist, and I'll never forget the message he sent back to me over the portal. He said, it's not necessary. It's not appropriate. You just need anxiety medication. Wow.

Mary Olson: Wow.

And because it's not immediately life threatening unless you're having a full-blown heart attack. it's, yeah, it's another reason why it's considered elective. So I sent my records to, Stanford and. They looked him over and Dr. Snicker, who's like head of the Myocardial Bridge research there, she was like, yeah, you likely need surgery.

She was like, it could still get delayed, and by the end of September we had mid-December officially scheduled with Stanford and then all I could do was sit and wait. And so all [00:29:00] fall of 2020, I sat in my house and waited for lifesaving heart surgery, and that was such a pivotal time for me. I am thankful I had the time because it gave me some necessary opportunities to work with my therapist, around the notion that I had not been born perfectly, that I had several things seriously wrong with my heart.

it just took a long time for me to wrap my head around the fact that I was going to have open heart surgery. and that it was maybe not gonna be the only time, and that I was not ever gonna be a hundred percent again and my whole life crumbled before me. And my ego was like, you should be out mountain biking.

So, you know, I will never forget the friends who brought meals cuz I wasn't able to cook. Friends showed up and cleaned our house, walked our dogs. It was, it was amazing. Friends from out of town came to stay with us and help and by early December I was packing, getting ready. And the day before, we were supposed to get on the plane to fly to Stanford, Stanford calls and says, Hey, we're just calling to reconfirm.

We're so excited to see you. You gotta go through like 8 million covid tests. I mean, it really felt like 8 million. It was insane. and you know, you have to do all these things. Like I had to do another stress test. I had to do a heart catheterization, which was his own surgery. I was gonna have three surgeries while I was at Stanford.

I mean, it was like such an undertaking to get to Stanford and do all this. And I, for the first time since all this began, I just sat in my, on the floor of my bedroom and cried. And I had just been counting down the days until we left for Stanford. And then I had a separate countdown for heart surgery, getting to the other side to recover.

my ego was still very loud about performance. I like kind of cringe when I say that out loud now. that was important to me at the time. Mm-hmm. . Yeah. And so they're like, we still want you to come. There's a chance that like, that could get reversed. You need to do all this other testing anyway to make sure that, you know, the.

Boots Knighton: The surgery would work because like in the heart catheterization, they do this dobutamine test that tests the arteries to make sure that they really are being affected by the myocardial bridge. And Stanford's really one of the only hospitals in the United States, well, at least at the time, that could do that kind of testing.

It was awful because it was really h it because my bridges were causing the problem. They did respond to the testing and they were like, you really need heart surgery. You really gotta fix this. , but we really can't do it because we have, you have to have an I C U bed to go to and we don't have one. And I was so angry and they were like, so you get to go get back on a plane and fly home and we might call you in March or April.

We really don't know. And so it took a long time for me to recover from that heart calf. But you know, we waited a few days to get on the plane. We flew home. but I want listeners to understand that like you do not bounce back from a heart catheterization, especially if they do the dobutamine test.

Mary Olson: Well, and it's interesting because it's maybe the first time where you were really, what you were feeling was validated by by these testing, right?

Like they Oh, yes. It really isn't like you finally got this validation, but with, it was also the, the, in your face. just slam,punch of, of, but we, we can't actually do the thing that will fix it. Right. so to have those two things together at the same time, like your first validation along with the, and we can't do anything about it.

I

I wanted to be better and perfect tomorrow. Like there was no. My inability to pivot and my inability to be flexible. I, I mean it, that was problematic. And to, you know, my own defense. I mean, I felt like I was, like, my heart wasn't getting enough oxygen, , it wasn't getting enough blood flow,

So I, yeah, patience. Patience was not a virtue at that moment, at that moment. so on the way to the San Francisco airport, after we had just been beaten to a pulp at Stanford, but in a very loving way, it was just very hard and stressful and lots of tests, and lots of covid tests. Oh, my poor nose. I get on the Facebook support group and I.

And I was like, what? I just didn't think any, like very few surgeons do the unroof surgery cuz you have to like cut into the heart muscle and it's not bypass surgery, those who've had bypass, I mean that's a surgery. I hear you. I see you. just something extra special about having your actual heart muscle cuts

I immediately like find this doctor. We're like I said, we are like in the rental car on the way to the San Francisco airport. And I call the office and Jason's like, let's just wait till you get home. And I was like, I am not waiting. So I call these people, they like answer and I tell them my plight.

And they had scheduled a consult, in the first, just at the beginning of the year with a potential surgery already by January 15th. And this was all because of Facebook. I'm gonna keep saying that over and over again because I still cannot believe it. And this man, lo and behold, we had a phone meeting, with on January the fifth because I'm five hours north of him and my stepmom and my dad got on the phone from North Carolina and my husband called in from work and everyone's like, we've gotta like do something.

Lived. Spoiler alert, . Here you are, January 15th, 2021. In the time of Covid, I had open heart surgery

Mary Olson: in an unexpected place and not how you planned. And finally,

Boots Knighton: and hilariously Stanford called at the beginning of March. I didn't tell them that I ended up having surgery. Like I was just like so focused on saving my life and they called and like, Hey, we're calling to, to schedule you for surgery,

And I laughed. And you know, by then, what was I like, six or seven weeks post open heart surgery. I was like, oh, I actually, I, I've already had surgery. When were you scheduling me for? And they're like, oh, we were calling for like mid-April. And I was, I was like, wow, I am so glad. I did not wait. You might not have.

Yeah. Likely wouldn't be around. No. Yeah,

Boots Knighton: Yeah. So, just a couple of days later, my mom went into the ICU herself with all kinds of problems.

she was coming through the other side of the rectal cancer, but it had the treatment of the chemo and the radiation had done a number on her. And, my mom had made some poor lifestyle choices that didn't really help her go into that super strong. So she was going into heart failure.

So I went and rip out the breathing tube. that was really hard to wake up from that. And I went to do like a whole nother episode talking about that part because as much as they tried to prepare me for that the day before, there's really nothing like waking up like that after having your sternum saw it open.

And so, Once they took the the tube out and freed me, I immediately started vomiting and I threw up 25 times post sternotomy in 24 hours. That was a pretty low point, but I was still so thankful to be on the other side. And then once I was past that, I, I started kind of coming around really quickly and I was able to walk myself from the I C U to the P C U.

and so like all this like bloody fluid was like going to this other holding tank. And I like T-Rex it from I C U to P C U. And you know, I thought I was like so fast and I was so not. But I remember thinking, wow, I, I immediately felt the difference. And I said to. all the, the posse that was around me, like all the nurses and Jason, I was like, I'm gonna live.

Boots Knighton: And that's when I knew how bad it was prior and I was like, I was out of time. I was outta time. And so they ended up letting me outta the hospital a little early cuz I bounce back so fast. I will say that if you take anything, for those who are preparing for this surgery or any heart surgery, if you take any sort of laxative.

post open heart. go easy. Don't double it. .

Boots Knighton: learned. Yeah. was a

Mary Olson: pretty triumphant T-Rex walk. Really? . That was your, your Tre Walk of life. . That was a big deal,

Boots Knighton: right? It was. You know, I, they, they followed me, you know, with like a little, their little holding thing to hold all my fluids and yeah, it was hysterical.

Mary Olson: That was the kinda image of that. Plus you realizing, Hey, listen, like I'm gonna live, this is it.

Boots Knighton: I'm gonna live it. Yeah. This T-Rex is gonna live, . Yeah. so, you know, the recovery was amazing. I, six weeks later we went down to Escalante. National monument after we had a follow up with my surgeon and we walked and walked on the, on the desert and it was like late February and I ended up overdoing it because that was my mo still, I still, I wanna talk about that too.

And I was so excited to be alive that I just wanted to walk and walk and walk and walk and walk. And in the desert, it's like my happy place. I walked too much and I actually injured, but because of my breathing had changed, I actually injured all like my diaphragm and I just hurt all my muscles in my chest and in my neck because I went on this insanely long hike and with like too much vert and I did all that six weeks post-op and it was all because I was just like not honoring my heart.

And then we met you, Mary and your husband Chris in the desert. And I, you know, I put her house on the market. It immediately goes under a contract. And then 12 weeks postop open heart, I'm packing up her house, so like 10 weeks postop open heart surgery. You know, I poured her ashes into the ocean on the coast of South Carolina.

you know, flying back, fly home, not thinking we're gonna like sell the house so fast, but we do. So then I immediately fly back. I'm packing up her house 12 weeks, posted open heart by, mostly by myself in South Carolina. It was intense.

Mary Olson: smacked some mountain biking in there too. . Oh, right. Yeah.

Boots Knighton: or stupid.

I'll go with remarkable. That sounds more supportive. .

Mary Olson: I think you're up to something here. We'll, we'll, we'll let it play out. . Yeah. So, yeah. Ok. We're, yeah. Packing up your mom's house.

Boots Knighton: Mm-hmm. . Mm-hmm. . And so, I think that's where I'm gonna like, End. This part one is packing up my mom's house because this was a major turning point for me with this heart surgery.

and accepting the loss of my mom, at the same time as all of this.

Boots Knighton: Hey, thanks for being part of the show today. If you're finding hope and inspiration in listening to the heart Chamber, please consider going to the heart chamber podcast.com and making a donation. You can find the donation tab at the top of the page. . Also, if you have a story that you wanna share with fellow listeners, I'd love to hear from you.