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Boots Knighton: [00:00:00]

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.

Mary Olson: Hello. I'm so thrilled to be here, [00:01:00] so honored, to be part of sort of drawing out and, and helping you tell your story and give sort of space for that. And just so honored that you asked

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.

So this is just a really sweet and fun moment for both of us. So I wanted to just tell you listeners, first of all, thank you for spending time with me on the Heart Chamber. I really wanted to provide an opportunity for fellow heart warriors like myself [00:02:00] to have a space for finding comfort, for finding inspiration support, because open heart surgery is no joke, and it can be really lonely and it can feel very isolating.

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.

I don't know what you wanna call it as, as this, as my heart made it known that it needed help. I was 42 years old. I'm launching this podcast just three months before my 45th birthday, and I've mostly come through the other side. I currently live in [00:03:00] Victor, Idaho, nestled in the Tetons, which has been a beautiful place to fall apart, get surgery and recover.

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.

It has tragedy, it has overcoming, it has, you know, forgiveness. It has redemption. It has so much more, than you could sort of imagine. and so to kind of cover all that and really give each kind of stage of this [00:04:00] journey,space to play out and time to tell your story.

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.

Boots Knighton: And I truly believe that.[00:05:00] Heart surgery doesn't have to be as hard as it sounds, and it can be a really powerful awakening to a much more meaningful and more awake life. And when I mean awake, I mean like experiencing all ranges of emotions and not being afraid and being courageous to try new things. I would not change any of my story for anything.

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.

And I, I [00:06:00] really credit my heart surgery for helping me get to that present moment. And I, apparently, I am an experiential learner, cuz I just don't think I could have learned that in a book or through all. I have a wonderful therapist, thankfully, and as great as my therapist is, and I show up and I do the work with my therapist every week.

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,

Mary Olson: those are some good worthwhile spoilers, to get into the rest of [00:07:00] the story. so tell us about what happened, and how you first became aware that your heart was having

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

It was a really gnarly, traumatic brain injury. And by 2020, after. So much rehabilitation, having to relearn how to ski, relearning to how to do a lot of things. I was really coming out the other side, but we noticed that I was starting to have more and more breathlessness, which was making no sense.

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.

but by [00:08:00] June, 2020 it started to be pretty severe. Like I was like, as much as I'm working out, this is really getting outta hand. And I even vomited on a mountain bike ride five minutes in by mid-June and had to turn around and. Then by June, 25th, my husband and I had gone out for a walk to walk off some stress.

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.

Boots Knighton: And I started having all these symptoms of a heart attack. And I'm a wilderness first responder. I've been through two courses. I mean, I really should know. , the signs of a heart attack and we're walking, and I don't say anything to Jason. I'm just trying to enjoy the evening and I'm thinking this is just really bad [00:09:00] stress.

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.

all the symptoms started coming back and I was like, okay, something's not right. And I was like, I should probably tell Jason. And I was thinking to myself, this is the last thing we need. . And before I could even [00:10:00] say anything, I was starting to push my bike up the hill and he's like, what is wrong with you?

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.

So I was like, I'm finishing this mountain bike ride . So, so with heart attack symptoms, I'm like, cruising down this amazing [00:11:00] trail. I still remember how beautiful it was. We get back to the car, he is like, okay, we're going to the hospital. And I was like, no, I'm hungry. Let's go home. And so he, he reluctantly takes me home and

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.

And I was like, yeah, but see all this stuff and it's happening in our lives. And like that could be it. But this is really not seeming like anxiety or [00:12:00] stress, you need to do something. So a few days later.

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.

We get in to see him a few days later. And you know, like I said, I am as fit as I've ever been. And he was like, Ms. Knighton, what are you doing in my office? And I was like, I am wondering the same thing. I mean, at this point I had no clue that anything could be wrong with my [00:13:00] heart. Up until this point, I have been a, clean bill of health minus my brain injury.

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.

And this was an isolated event, he's like, that's what I'm hoping for, so why don't you go and climb that mountain? And I was like, great. So, you know, Jason's like, I don't think we should do it. I don't think it's a good idea. And I was like, oh no, we're [00:14:00] going, we're going. And he was like, I really don't think we should. And I was like, I will be okay. If I start having symptoms, I'll turn around.

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 we start walking and it's like five in the morning and I immediately start having symptoms , and my silly self [00:15:00] continues to push through it. and my feet are tingling, my hands are tingling. I am breathing really heavy. I can't catch my breath. The higher up we go, it's getting worse. And we're with our friends and they had invited two other friends and these people are so fast in the mountains and for some reason, which I would find out in a few weeks, I was turning into a snail.

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.

Shadowing so much. Foreshadowing. So , so amazingly and stupidly, I get to the summit and Jason [00:16:00] knew darn well I was not okay. And I was like just so determined. And we get to the summit and I just like collapse. I'm just like so tired. but it was amazing. I'm, so thrilled to say I've been able to go up Mount Bora.

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.

And so I called the [00:17:00] cardiologist. I was like, this is almost like er level pain. You know, can, can you get me in for the stress test like immediately? And he did. He got me in the next day. by now it's like mid-July of 2020. Okay. So Covid still, still with us and they allowed Jason to come in with me on this one.

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.

Boots Knighton: [00:18:00] And you do have it, so that's good to know, but you're good. And the stress test was good. And that was what was really frustrating was I blew that stress test out of the water because I was performing at such a high level and. , you know, the cardiologist was like, we need to keep digging. He's like, okay. So now we know about the bicuspid valve, but I really wanna do that heart CT with contrast to see what else is going on with your heart.

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 I read, and I did read, and I [00:19:00] continue to read any doctor's note because a lot of times they'll have like how they interpret things, but they may not necessarily tell you, they might forget. and it's important for you to use that to help you research so then you can better advocate for yourself.

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.

And so, . I remember as I was reading it all, then I read it out loud to, my husband Jason and my best friend Kelly. I couldn't feel my body. It was like I had such a deep knowing that life was about to get extra, extra hard for me [00:20:00] and that this wasn't a stress event. And that not only did my mother-in-law and my mom have cancer and I needed a new car, , I apparently needed some work on my heart too, and

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.

And so the cardiologist, and here's where it took a turn for just the crummy, crummier the cardiologist didn't even call me with that report. He had a nurse call and he said, the nurse said, Hey, you know, and I don't wanna mention this cardiologist by name, but. the nurse said he's not worried about any of [00:21:00] this.

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.

And he had worked there, he had been in that. And for him to blow me off like that was so awful. And I felt like I had been [00:22:00] thrown out to like the middle of the ocean with 50 foot waves and taking on water and had nowhere to turn.

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.

on flat ground. I went from like being the best shape ever in a matter of two months, feeling like I was going to die with [00:23:00] any amount of exercise. And next I referred myself to the University of Utah and got matched up with a cardiologist who did not believe myocardial bridging affects patients. he honed in on the bicuspid valve.

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 [00:24:00] endothelial dysfunction is when the linings of our arteries, are made of endothelial cells. And to take a step further back from that, even, you know, myocardial bridging is when the arteries of your heart, instead of laying on top of the heart, where it's not being squeezed by, the muscle of the heart, mine had tunneled into the.

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.

And so every time my heart beat, it was compressing those arteries and cutting off the blood supply to the heart. Well, Stanford University has discovered that, arteries. Can take that squeezing only, but for so long, it's kind of like if you [00:25:00] squeeze a garden hose over and over again, it's gonna eventually give out and the water's not gonna flow through as easily.

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.

And I have been hit by lightning, so I know the difference. that's another podcast and another story. Yeah. . But, I have nine lives. . I've already spent several of them, [00:26:00] but, you know, you of, you blew me off and I was just running outta options. I was so desperate to get help and so just something one day tapped me on the shoulder.

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.

While social media can. be toxic and hurtful. It can save a life. And I am a living, breathing example of that. So I get accepted onto this Facebook group and I felt like I, I knew I'd found my [00:27:00] people. I knew I was not crazy by reading all these stories. And there's so much medical gaslighting happening around the country over this myocardial bridge congenital defect.

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.

Boots Knighton: So I self-referred, I sent my own stuff to Stanford and because Covid had basically shut down any elective surgeries, believe it or not, having myocardial bridge correction, it's called unroof. The surgery is considered an elective surgery. And it's, I mean, it is like I could either sit still for the rest of [00:28:00] my life and not move my body until my heart gives out, or get the surgery.

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.

Your bridge is pretty significant, but we can't get you in the, at this point, it was mid-September, just 2020. He's like, she's like, we can't get you in until mid-December because Covid has shut things down. They were just starting to open back up, but there was still no vaccine and it was still really raging across the country.

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.

You should be out hiking and getting ready for the next ski season. At the time I was a ski instructor and normally I was in ski fit and like booking clients [00:30:00] for winter. And I, I couldn't do anything. I couldn't even wash dishes. I could not even stand in my kitchen and wash dishes. My heart would hurt too much.

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.

And I was like, okay, great. And then an hour [00:31:00] later they called back and they're like, you're not gonna believe it, but our I C U just filled up with covid patients and we have to cancel your surgery. Your final open heart surgery. And we had planned, you know, we were gonna be there for three weeks because like after the open heart surgery, then we were gonna have to stay for two more weeks for me to recover enough so that I could get back on a plane and fly home.

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.

And I'd been reading all these amazing stories of hope on our Facebook support group for myocardial bridging. And I was like, I actually might be, Who knows, maybe I'll be even better than before and I can run up mountains even faster. I mean, I was all about [00:32:00] like, how can I come back better, faster, stronger?

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.

So we go, Jason's like, I have to be in a wheelchair. So he's like wheeling me through the Salt Lake Airport and then the San Francisco airport. it's like so ridiculous. I mean, flying was so hard on my body. And you know, Stanford is amazing. They put me [00:33:00] through all the tests. The heart catheterization was so awful.

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.

Like, and especially if you have a myocardial bridge that is really affecting you. it really knocked me down and I was [00:34:00] probably not feeling, not that I was feeling like myself anyway, but I really felt like I wasn't gonna die maybe about three weeks later. It was that hard on my body.

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

Boots Knighton: just can't imagine. Yeah. Yeah. And they had, I mean, they, do one unroof surgery a week at Stanford, and I was the first one they had canceled. So they did it all the way up until I got there. And then it, right when I got there basically was when they like, Nope, we can't do this anymore. So, like I had, if I had just been one week earlier, like if my cardiologist in [00:35:00] Jackson had referred me when I asked him to, you know, like that was the story I was telling myself, like, I wanted it done yesterday.

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.

Happened to just ask the question to tell, let everybody know what had happened. And I was like, I, I'm not gonna live till March. There's just no way. And this woman responds, she's [00:36:00] like, Hey, I just found this surgeon south of Salt Lake City, Utah. And he just did my own roofing surgery like nine days ago.

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 I said, I hear that, a doctor at uh, Intermountain Hospital in, Murray, Utah. And I said, I hear he does an unroof surgery. I'm leaving Stanford. And I tell him the whole saga and they're like, we're on it. We had a direct flight from San Francisco to back to [00:37:00] Jackson, Wyoming, and by the time we landed, all my records had been transferred from Stanford and Jackson, Wyoming, down to Intermountain.

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.

And he had looked at all the testing and he had trained at Mayo and he's like, yes, you need the surgery and we cannot wait. But he's like, you've gotta wait 10 more days, but I'm getting you in. And January 15th, I had open heart surgery, unroof [00:38:00] of my L A D and my L C X. it was a very successful surgery and I.

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,

Mary Olson: [00:39:00] So, so you have this surgery. Mm-hmm. , excuse the story certainly does not end there. talk about the sort of journey after that. What, what happens after surgery after that first open heart surgery?

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.

And so that immediately kind of colored my transformation. I mean, I felt like I'd been reborn. and so that ends up being like this parallel story for the next many months. but in, you know, physically, you know, I came out of the surgery and it was a really hard waking up. I was intubated. They had tied [00:40:00] my hands to the, the railings of the bed.

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 it's funny, in my memory, I thought I was really fast and Jason took video and pictures of me, and I looked like a T-rex. Like I was holding my arms really close to my sides, and I was just kind [00:41:00] of like stiff. And, you know, I had like, my catheter was coming outta my gown, and then they also have a tube, a drain tube from your chest.

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. .

Mary Olson: Yeah. Lessons [00:42:00] learned. Lessons

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.

It's like, I was a really slow learner in listening to my body cuz I just demanded of my body just to get right [00:43:00] back to things. And I mean, I, I did everything within reason. Like I didn't drive till they told me to, which was like six weeks. And, you know, I didn't lift things, I didn't like, I did all, I followed all those guidelines, but when it came to like actually walking, I was feeling so good finally.

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.

I was not honoring what I had been through and the way that it needed to be honored. I ended up being fine, but it [00:44:00] was an incredible amount of pain and it was a really tough learning that I could have avoided. It was also necessary. and nine weeks post open heart. My mom passed away. She died on the first day of spring, two days after my birthday, of heart failure.

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.

That I have a very clear memories of [00:45:00] biking together and, and just,and you talking about relearning to breathe and, and I got to kind of see it in action too, and just, you know, you were taking it, taking it pretty easy. But to see someone on a mountain bike in the desert kind of that soon, post-op was, was pretty, remarkable

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 little did I know I had two more surgeries coming, and then I would ha and in the process of that I would have one of the greater unraveling of my entire life. So listeners come [00:46:00] back for part two. Why don't you take all this in and at your leisure, come back for part two where I talk about, my sternum having a fight with my sternal wires and some radical forgiveness for my surgeon.

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.

You can also leave a voicemail at the heart chamber podcast.com. You can find the tab on the right side of the webpage. Simply click on it and leave me a voicemail and I'll get back to you.[00:47:00] Thank you so much for spending part of your day with me today. Now let's get back to our story.