Episode 29

bonus
Published on:

19th Dec 2023

Boots' Open Heart Journey from Climbing Mountains to Finding Ways to Forgive

In this emotionally charged episode of The Heart Chamber Podcast, host Boots Knighton takes listeners on a raw and powerful journey through her harrowing experiences with open heart surgery and her complicated recovery. From the life-threatening health journey of her mother overlapping her own diagnosis, to the challenges in receiving the life saving surgery she needed, to unexpected complications post-surgery --Boots shares her deeply personal struggles and the transformative power of forgiveness that bubbled up through it all.

Join her as she delves into the profound impact of chronic pain, emotional turmoil, and the crucial role of self-love, patience, and accepting support as you navigate the healing process. Prepare to be moved as Boots opens up to us to discuss the uncharted territory of these major life changes and what helped her navigate through it all. If you're seeking a story of resilience, forgiveness, and the triumph of the human spirit, don't miss out on this gripping episode.

This is a re-release of episodes 1 & 2 of The Heart Chamber podcast that have been combined into a single episode for ease of listening.

Boots Knighton has been an educator since the late 1990s in all facets of education including high school science, middle school mathematics, elementary reading, college level ecology, ski instruction, backpacking, and experiential education. Her greatest teacher has been her heart thanks to a surprise diagnosis in 2020 (during the pandemic) of three different congenital heart defects. She is now thriving after her open-heart surgery on January 15, 2021 and is on a mission to raise awareness through her podcast, The Heart Chamber: patient stories of open-heart surgery and recovery, that heart surgery can be an incredible opportunity to begin again in life and live life wide open.


How to connect with Boots

The Heart Chamber - A podcast for heart patients (theheartchamberpodcast.com)

Email: Boots@theheartchamberpodcast.com

Instagram: @theheartchamberpodcast or @boots.knighton

LinkedIn: linkedin.com/in/boots-knighton

If you enjoyed this episode, take a minute and share it with someone you know who will find value in it as well. You can share directly from this platform or send them to:

The Heart Chamber - A podcast for heart patients (theheartchamberpodcast.com)

Transcript

We feel it is important to make our podcast transcripts available for accessibility. We use quality artificial intelligence tools to make it possible for us to provide this resource to our audience. We do have human eyes reviewing this, but they will rarely be 100% accurate. We appreciate your patience with the occasional errors you will find in our transcriptions. If you find an error in our transcription, or if you would like to use a quote, or verify what was said, please feel free to reach out to us at connect@37by27.com.

Boots Knighton [:

t. I have so much planned for:

Boots Knighton [:

Welcome to The Heart Chamber. Hope, inspiration and healing, conversations on open heart surgery. I am your host, Boots Knighton. If you are a heart patient, a caregiver, a health care provider, a healer, or are just looking for open hearted living, this podcast is for you. To make sure you are in rhythm with The Heart Chamber, be sure to subscribe or follow wherever you are listening to this episode. While you're listening today, think of someone who may appreciate this information. The number one-way people learn about a podcast is through a friend. Don't you want to be the reason someone you know gained this heartfelt information? And if you haven't already, follow me on Instagram, 2 different places, at Boots.Knighton or at The Heart Chamber podcast. You can also find me on LinkedIn as well as Facebook. But enough with the directions. Without further delay, let's get to this week's episode.

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 ask 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 want to 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. So honored to be part of sort of drawing out and helping you tell your story and give sort of space for that. And just so honored that you asked and happy to be here.

Boots Knighton [:

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. She and my husband 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.

Boots Knighton [:

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 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.

Boots Knighton [:

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 want to call it. As my heart made it known that it needed help, I was 42 years old. I'm launching this podcast just 3 months before my 45th birthday, and I've mostly come through the other side. I currently live in 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 health care. 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 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.

Mary Olson [:

And so, to kind of cover all that and really give each kind of stage of this journey a space to play out and time to tell your story, let's talk a little bit just about how you want to structure this 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 to the end. And I'm going to 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.

Boots Knighton [:

They tried with me. They tried to give me a little snippet of 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 I truly believe that heart surgery doesn't have to be as hard as it sounds. And it can be a 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.

Boots Knighton [:

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 really credit my heart surgery for helping me get to that present moment. And I apparently, I am an experiential learner because 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 curious on what I was supposed to learn from this. And I can tell you as hard as it was, it has been worth it.

Mary Olson [:

Well, those are some good worthwhile spoilers to get into the rest of the story. Tell us about what happened and how you first became aware that your heart was having issues.

Boots Knighton [:

Okay. So, well, back in:

Boots Knighton [:

reathlessness? And by June of:

Boots Knighton [:

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 whole 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 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 got to call 911. What's this blah, blah, blah, blah, blah. I was like, no. We're almost to the top. I'm sure I'm fine. And so, me and we're 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, this is just really bad stress. Think about our week. And so, we get to the top, and I knew that the downhill part was going to be sweet. So, I was like, I'm finishing this mountain bike ride.

Boots Knighton [:

So, with heart attack symptoms, I'm like cruising down this amazing trail. I still remember how beautiful it was. We get back to the car. He's like, okay. We're going to the hospital. And I was like, no. I'm hungry. Let's go home. And so, he reluctantly takes me home and cooked 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?

Mary Olson [:

Yeah.

Boots Knighton [:

So, we go to the ER and I'm like, this is going to 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 EKG 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 stress. You need to do something. So, a few days later,

Mary Olson [:

I was just going to say, I think there are stick eristics that first responders and doctors and anyone trained in medicine are the last to admit they're having a heart attack.

Boots Knighton [:

Yeah. So, I mean, I and, of course, Jason couldn't come in because 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, 2 hours later, I'm back in the car and we are just, like, beat down. And I 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, miss 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 heart.

Boots Knighton [:

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 going to go and look for bicuspid valve. I'm going to look for myocardial bridging. I'm going to look for all these other different things, and we're going to 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 tallest peak with 2 dear friends of ours. And so, I asked the cardiologist.

Boots Knighton [:

I was like, well, what do you think? Do you think I can still do this? He's like, I'm sure we're going to 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 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 6-hour drive, and we go with our friends and we start, you know, the morning of this really, and to get the listener being able to picture Mount Bora, it's a very steep 4 miles to the summit. And I'm kind of forgetting now, but it's almost like 5,000 feet of vertical gain, and it's tricky hiking and climbing. 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 going to walk my butt up the Idaho's tallest peak.

Boots Knighton [:

So, we start walking and it's like 5 in the morning, and I immediately start having symptoms. And my silly self 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 2 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 all take a break, and I lay flat. And my friend, Greg, says to me he's like, my gosh, Suzanne. He calls me Suzanne. He's like, please don't, he said something to the effect of, like, don't have a coronary on us because he could just tell I was really struggling.

Mary Olson [:

All the foreshadowing.

Boots Knighton [:

So much foreshadowing. So, amazingly and stupidly, I get to the summit, and Jason knew darn well I was not okay. And I was, like, just so determined. And we get to the summit, and I just, like, collapsed. 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.

Boots Knighton [:

And I felt good as new. And I've now later learned that, you know, I was no longer putting stress on the heart because it's easy cakewalk 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.

Boots Knighton [:

By now, it's like mid-July of:

Boots Knighton [:

And it was really interesting because the stenographer who was doing the or sorry. The sonographer, not stenographer, who was doing the initial imaging of the heart. He said it to me, he's like, you know, the doctor is going to 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 the bicuspid aortic valve, and then the cardiologist came in and confirmed that.

Boots Knighton [:

He was like, that was one thing I was concerned about. 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 want to 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.

Boots Knighton [:

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 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 myself. So, I read and I did read and I 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. 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 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.

Boots Knighton [:

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, 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 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.

Boots Knighton [:

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 want to mention this cardiologist by name, but the nurse said, he's not worried about any of 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 going to, you know, have it monitored the rest of my life. I might need another open-heart surgery. But 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, the 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 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 was a local, this was somebody local. This is the soonest you could get into, local available. Yeah. And so then, you know so where do you go from there once you get that? And it's not in harmony with what you know is going on with your body, what you're seeing in the test results. Where do you go from there?

Boots Knighton [:

Mm-hmm. Well, I continue 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 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 2 months, feeling like I was going to die with any amount of exercise.

Boots Knighton [:

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, it another dear friend drove me down for a nuclear stress test on my heart, and 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.

Boots Knighton [:

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, 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 heart. And so, my LAD artery and my LCX arteries had tunneled into the heart. And for quite long distances, I think my LCX was almost, like, 4 centimeters, and my LAD, I'm kind of glad, I can't quite remember, but it was at least 3 to 4 centimeters, and it was almost into the ventricle of my heart, so it was also considered deep.

Boots Knighton [:

And so, every time my heart beats, it was compressing those arteries and cutting off the blood supply to the heart. Well, Stanford University has discovered that the arteries can take that squeezing only, but for so long. It's kind of like if you squeeze a garden hose over and over again, it's going to eventually give out, and the water's not going to flow through as easily, that's what happens with arteries. So, they're squeezed, and my arteries at that point had been squeezed for 42 years with every beat of my heart, and they finally gave out because, the endothelial cells that were lining the arteries were like, we've had enough. We're going on strike. Yeah. And so, 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.

Boots Knighton [:

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 in another story. But I have 9 lives. I've already spent several of them.

Boots Knighton [:

But, you know, you of you blew me off, and I was just running out of 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've 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 1.

Boots Knighton [:

And that Facebook group saved my life. 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 knew I'd found my 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 Stanford 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.

Mary Olson [:

Wow. 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 unroofing, the surgery, it's considered an elective surgery. And I mean, it is. Like, I could either sit still for the rest of 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.

Boots Knighton [:

s point, it was mid-September:

Boots Knighton [:

and wait. And so, all fall of:

Boots Knighton [:

My heart would hurt too much. So, you know, I will never forget the friends who brought meals because I wasn't able to cook. Friends showed up and cleaned our house, walked our dogs. 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 got to go through, like, 8 million COVID tests. I mean, it really felt like 8 million. It was insane.

Boots Knighton [:

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 this own surgery. I was going to have 3 surgeries while I was at Stanford. And I was like, okay. Great. And then an hour later, they called back, and they're like, you're not going to believe it, but our ICU you 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 going to be there for 3 weeks because, like, after the open-heart surgery, then we were going to have to stay for 2 more weeks for me to recover enough so that I could get back on a plane and fly home.

Boots Knighton [:

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 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've 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, 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.

Mary Olson [:

Uh-huh. Yeah.

Boots Knighton [:

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 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 through all the tests. The heart catheterization was so awful. It was awful because my bridges were causing the problem. They did respond to the testing, and they were like, you really need heart surgery. You really got to fix this, but we really can't do it because you have to have an ICU bed to go to, and we don't have one. And I was so angry.

Boots Knighton [:

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 cath, 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 probably not feeling, not that I was feeling like myself anyway, but I really felt like I was going to die maybe about 3 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 testing. Right? Like, you finally got validation, but with it was also the in your face just slam punch of but we can't actually do this thing that will fix it. So, to have the thing 2 things together at the same time, like your 1st validation along with the and we can't do anything about it. I just can't imagine. Yeah.

Boots Knighton [:

Yeah. And they had, I mean, they do 1 unroofing surgery a week at Stanford, and I was the first when 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, if I had just been 1 week earlier, like, if my cardiologist in 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.

Boots Knighton [:

Like, there was no my inability to pivot and my inability to be flexible, I mean, 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 was not a virtue 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.

Boots Knighton [:

Oh, my poor nose. I get on the Facebook support group, and I happened to just let everybody know what had happened. And I was like, I'm not going to live till March. There's just no way. And this woman responds. She's like, hey, I just found this surgeon south of Salt Lake City, Utah, and he just did my unroofing surgery, like, 9 days ago. And I was like, what? I just didn't think any like, very few surgeons do the unroofing surgery. Because 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. There's just something extra special about having your actual heart muscle cuts. I immediately, like, find this doctor. 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.

Boots Knighton [:

So, I call these people. They, like, answer. And I tell them my plight, and I said, I hear that the doctor at Intermountain Hospital in Murray, Utah. And I said, I hear he does an unroofing surgery. I'm leaving Stanford. And I tell them the whole saga, and they're like, we're on it. We had a direct flight from San Francisco back to 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.

Boots Knighton [:

,:

Mary Olson [:

In an unexpected place, not how you planned.

Boots Knighton [:

Yes. 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 schedule you for surgery. And I laughed. And, you know, by then, what was I like, 6 or 7 weeks post open-heart surgery. And I was like, oh, I actually, 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 like, wow. I am so glad I did not wait.

Mary Olson [:

You might not likely be around. So, you have this surgery. The story certainly does not end there. Talk about the sort of journey after that. 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 my hands to the railings of the bed, so I wouldn't rip out the breathing tube. That was really hard to wake up from that. And I want to do, like, a whole another episode talking about that part because as much as they try to prepare me for that the day before, there's really nothing like waking up, like, after having your sternum sawed open. And so, once they took 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 started kind of coming around really quickly, and I was able to walk myself from the ICU to the PCU.

Boots Knighton [:

And it's funny. In my memory, I thought I was really fast, and Jason took video and pictures of me, and I look like a TRex. Like, I was holding my arms really close to my sides, and I was just kind of, like, stiff. And, you know, I had like, my catheter was coming out of 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, TRex it from ICU to PCU. And, you know, I thought I was, like, so fast, and I was so not. But I remember thinking, wow. I immediately felt the difference. And I said to all the posse that was around me, like, all the nurses and Jason, I was like, I'm going to live. And that's when I knew how bad it was prior, and I was like, I was out of time. I was out of time. And so, they ended up letting me out of the hospital a little early because I bounced 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 learned.

Boots Knighton [:

Lessons learned. Yeah.

Mary Olson [:

It was a pretty triumphant TRex walk, really. That was your like, walk of life. I mean, that was a big deal. Right?

Boots Knighton [:

It was. You know, they followed me, you know, with, like, their little holding thing to hold all my fluids, and, yeah, it was hysterical.

Mary Olson [:

Plus you realize that, hey, listen. Like, I'm going to live. This is it.

Boots Knighton [:

I'm going to live. Yeah. This TRex is going to live. Yes. So, yeah. The recovery was amazing. 6 weeks later, we went down to Escalante National Monument after we had a follow-up with my surgeon. And we walked and walked in the desert, and it was late February. And I ended up overdoing it because that was my MO still. I want to talk about that too. It's like, I was a really slow learner in listening to my body because I just demanded of my body just to get right back to things. And, I mean, I did everything within reason. Like, I didn't drive till they told me to, which was, like, 6 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.

Boots Knighton [:

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 hurt, and I did all those 6 weeks post op. And it was all because I was just, like, not honoring my heart. I was not honoring what I'd been through in the way that it needed to be honored. I ended up being fine, but it was an incredible amount of pain and it was a really tough learning that I could have avoided. It was also necessary.

Boots Knighton [:

And 9 weeks post open heart, my mom passed away. She died on the 1st day of spring, 2 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 contract. And then 12 weeks post open heart, I'm packing up her house. So, like, 10 weeks post 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 going to, like, sell the house so fast, but we do. So, then I immediately fly back. I'm packing up her house, 12 weeks post open heart. I'm mostly by myself in South Carolina. It was intense.

Mary Olson [:

Went some mountain biking in there too.

Boots Knighton [:

Oh, right. Yeah.

Mary Olson [:

The core memories of life move together and just and you talking about relearning to breathe. And I got to kind of see it in action too and just to you know, you're taking it pretty easy, but to see someone on a mountain bike in the desert kind of that sound post op was pretty remarkable

Boots Knighton [:

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

Mary Olson [:

I think you're leading up to something here. We'll let it play out. Okay. So, yeah. Okay. Yeah. Packing up your mom's house.

Boots Knighton [:

Mm-hmm. And so, I think that's where I'm going to, like, end this part 1 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 2 more surgeries coming. And then in the process of that, I would have one of the greater unraveling of my entire life. So, listeners come back for part 2. Why don't you take all this in and at your leisure, come back for part 2 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.

Mary Olson [:

Welcome back. This is part 2 of kind of 3-part story where Boots is sharing her journey with open heart surgery and the events kind of surrounding that. The part 1, she walked us through the events leading up to having open heart surgery and then also with the death of her mom. And then now we're kind of going to get into what happens next. I can't wait to sort of keep the story going. It's really a remarkable one, and I look forward to part 2.

Boots Knighton [:

Thanks, Mary. And, again, my friend Mary Olson joining me from Washington State. Yeah. So last part, I left off with my mom cleaning out her house 12 weeks post open-heart surgery. I'd given myself 9 days in her a house. And 9 days to completely consolidate our life, and I ended up hiring an incredible, you know, team of people to come in and help, but it was still really up to me to go through everything on my own. And I was also, at the time, not fully acknowledging that I was dealing with my own cardiac depression. My surgeon had warned me that people who have heart surgery typically get depressed afterwards.

Boots Knighton [:

It's like cardiac depression and that's something I'm going to dive into in a future episode with actually a variety of different people who I have various perspectives on cardiac depression. But for this episode, you know, it was in the background. I was on, like, antidepressant and an antianxiety med to help me. That was, like, such a good thing to do, and I really encourage you to speak with your medical provider about that should you be facing heart surgery because it is real. And I did write about it in my journal, and it hit me pretty quickly. Like, I was still in the hospital, and it's a very different type of depression than actual, like, episodic depression or maybe brain chemistry depression. It is its own thing. So, I had that in the background, and I'm grieving my mom.

Boots Knighton [:

would be, like, mid-April of:

Boots Knighton [:

Like, I could run my fingers up and down my sternum and find each individual wire. And she gets me on the phone with my surgeon, and I describe to him what's happening. And he's like, you know, I was worried about this. He's like, so I'm a very petite person, and he acknowledged that. And he said, you know, most people, like 99% of the people have no problem with external wires. But he's like, you're probably that 1% who reacts to them. And I kept feeling like they were touching my nerves. And so, I would get, like, these electrical pulses going down my arms.

Boots Knighton [:

It was, like, awful. It wasn't, like, just uncomfortable. It, like, really hurt when it happened, and I felt like the wires were starting to work up through my skin. It was pretty gross. And so early June, Jason takes me back down to Salt Lake, and they have to open up my entire scar, my entire sternal scar that I'd worked so hard to heal well and take out all the wires. Now these wires had already adhered to the bone or the bone had already adhered to them. And so, it was a lot of trauma to my chest to pull all these wires out. And I think there were 7 of them, 6 or 7. See memories do start to fade. So, it was a, you know, it was an outpatient surgery. I mean, they put me under, but I was able to go home same day, and I was sore. It really was a traumatic surgery to my chest. And my whole right boob was swollen and black and blue, and I just kept picturing, like, having to put his foot up on my boob. I don't know he didn't do this, but, like, I had this, like, vision of him, like, just, like, pulling. Yes. It was intense. But I love my surgeon, and he and I get along great. And he said it was a success, and I was like, hey. I want to keep my wires. He was like, why would you want to do that? And I was like, well, I don't know. It's like, you know, I want to make jewelry out of it one day or, I don't know, an altar.

Boots Knighton [:

Why not? They cost me, however, hundreds of thousands of dollars, it felt like at that point. And so, it took me about 2 weeks to, like, work up the nerve to open the package and, like, look at them. But when I did, the first thing that was shocking was how thick they were. And I was like, wow. You could, like, fix a chain link fence with these things. That was my first impression. My 2nd impression was it looks like part of a wire is missing. And my heart falls through the floor, and I had had a heck of a recovery this time around. Like, it took a long time for the anesthesia to leave my body.

Boots Knighton [:

I was extremely depressed. By now, it was late June. Normally, I'm mountain biking and climbing mountains, and I couldn't do anything. And the grief of my mom was, like, finally settling in, and I was just over it. Like, I felt like I had just been pummeled by the universe, everybody. I was not in a good place. And I called down to the office down in Utah, and I was like, hey. I'm holding all these wires in my hand, and I wonder if 1 is still in my body or part of 1.

Boots Knighton [:

And they're like, the person was like, okay. I'll check. And she's like, you know, I went back and read all the surgeon notes. He says he got it all. Would you like to get an X-ray just to make sure? And I thought to myself, and I was like, I rather shoot myself in the head than go into another hospital right now. Like, that's how I felt. I was like, I'm just going to take your word for it. But deep down, I felt like there was still a part of a wire in me despite the way these wires looked.

Boots Knighton [:

So, you know, I go through the rest of the summer. I'm, like, really grieving my mom. I'm working with the person she kind of put in charge of and how she set things up for me. And we're getting to know each other. I'm trying to sell our stuff, and I'm having some of the stuff I wanted to keep moved out to Idaho, it was like this dumpster fire. So here I am, like, grieving my mom, finishing up her life, trying to heal, trying to figure out who I am now after, like, all of this. It's still COVID. It was bananas.

Boots Knighton [:

his whole thing began in June:

Boots Knighton [:

So, they run a couple of images, and then the guy comes back in, the tech, and he was so great. And he was like, so you said you had all the sternal wires removed. Right? And I was like, yeah. And the surgeon, like, promised me he got it all. He's like, okay. And then I lay there a little longer, and then he brings a radiologist in, and that, like, never happens. And the radiologist was like, miss Knighton, I have some really hard news. You still have a wire in you. That was, yeah. That was a tough moment. And, you know, I'm in a mask. They're all in masks, and I could tell that they were, like, feeling it for me.

Mary Olson [:

Mm-hmm. Mm-hmm.

Boots Knighton [:

And, like, I finally had, like, nothing left. I couldn't cry. I couldn't say anything. Like, I just laid there and just rage took over and disbelief. And, you know, the radiologist was like, go get dressed, and I'll bring you back into the office, and I'll show you. And he didn't have to do that. You know, normally, radiologists wouldn't do that, but he brought me in. He's like, there it is.

Boots Knighton [:

He's like, it likely broke off in the surgery and the surgeon just couldn't see it. And so, I call, I get out of the hospital and I'm, like, raging. And I called my husband, and then I try to call my dad, get my stepmom, and I'm raging at her. Not at her, but just raging. And then I call the surgeon's office, and I just could not remain calm. And, you know, the very long story short there, I calm down. I choose not to sue, and I choose to meet him as a human being. And, you know, he was like, unfortunately, I wish that was the only problem. But he's like, I don't think that's what's causing your pain.

Boots Knighton [:

He's like, the top your sternum never healed properly. He's like, that also happens very rarely, but it happened and you need to have a titanium plate put in to hold your collarbones together because they're slipping past each other and that's likely what's hurting. So, you know, he's like, I understand if you never want me to touch you again, but I would love the opportunity to fix this. So, I let him. And it ended up being the most healing thing I could done for myself, for him. He's a human. It was a mistake. I would still recommend him a million times today.

Boots Knighton [:

He made it right, you know? And the bummer was I had to be opened up a 3rd time. So, the top of my scar has been cut 3 times, but it was difficult. But it was beautiful at the same time because it really gave me the opportunity to fully practice true, deep forgiveness over something that was, like, really hard. And it set my recovery back. You know, I deal with a lot of chronic pain. I don't think it's just because of that. But by letting him fix it, by us meeting eye to eye and letting him say, I am sorry, and me saying, I forgive you. Just fix it and let's move on. I never held any grudge or bit of anger or regret after that. And what it provided was peace for him so that he could go back doing the amazing work he does as a surgeon, and then I could fully focus on my healing.

Mary Olson [:

And peace for you too. Right? I mean, I think that that's forgiveness sense of being internal work for us and really, like, it has such a profound effect on the forgiver as well. I think and just what you said about him, seeing him as a human and meeting him as a human, I think something we don't really do with well, and that's probably in the world, but also with doctors and surgeons. You know? It's like we put them on some infallible level, and they are. But then, you know, his being human had such a profound impact on you and created such a hard circumstance. So,

Boots Knighton [:

yeah. Yeah.

Boots Knighton [:

Yeah. I had the plate put in, and then I just focused on moving forward and healing. And I was still holding on to, you know, getting back to skiing, getting back to my life as it was before. And I had not radically accepted that my life needed to change in every way. And that was the big kind of unraveling for me because I did try to go back to my old life, which was teaching skiing and pushing myself in the gym and pushing myself on the bike. And my heart just kept saying, nope. Nope. Nope. And I really dug myself a hole emotionally and mentally over that because I just was not you know, you hear of that quote, like, you have to let go of what you thought your life would be so that way you could walk into the life that's meant for you.

Boots Knighton [:

It took many more months for me to really understand that and to accept it. And I mean, like, radically accept it. And I wasn't okay with it. I felt like my old life had died, and my identity died. And I had to figure out who I was going to be now with this imperfect heart that thankfully, you know, had been unroofed, but, you know, it's still healing. I mean, most people don't really start to feel fully, like, they're coming around until, like, 3 years, years after unroofing surgery. And, you know, I'm trying to just get back to my old life within a year. And I just kept not listening to my body.

Boots Knighton [:

And by December of:

Boots Knighton [:

Like, I tried, I can't even believe I thought that was a good idea. And to try to, like, teach skiing even half day. Like, it's a lot on the body. And my heart was just saying, knock it off. Knock it off. Like, this is not what we want. You know, like, I've had to, like, turn my heart into, like, this, like, little personality, and, like, give it, like, an attitude. And, you know, I can kind of picture it, like, putting its, like, little arteries as acting as arms on it's, like, you know, lower ventricles and being like, knock it off. You know? I was just like, no. We're going to, no. You better pull it together. I know you've been cut into and your feelings are hurt, but we're going to get back to our old life. And it's like, no. We're not. And I'm going to put you into heart failure if you don't pull it together.

Mary Olson [:

Mm-hmm. There's so much identity wrapped up in that. Got to get back. Get out there. Yeah. Yeah. It's hard. It's got to be a hard thing to reinvent.

Boots Knighton [:

And that was what last winter was. You know, I wrote a book last winter. I wrote 94,000 words, and it was basically making meaning of my mom's death during my time fighting to live. That book will come out in probably a couple of years because I'm now writing a book that's going to go before that. But last winter was really about deeply grieving everything. I mean, everything. I didn't have a choice. It was either I was going to die.

Boots Knighton [:

My heart was going to, like, die of, like, some emotional overload at that point, or I ride it out of me. So, I chose to ride it out. And then by March 20th, exactly a year after my mom's death, I wrote the last sentence of that book. And I felt like I had done all the grieving I needed to do. And, I mean, I still grieve my mom. I miss her. I love my mom. But it was like a year of truly, deeply grieving her.

Boots Knighton [:

And I started to pull out of it some. I mean, I did have to go to the Mayo Clinic this past summer because I'm still struggling with endothelial dysfunction, vasospasms. I'm likely, like, on the edge of some microvascular disease. But my local cardiologist wanted me to go to the best of the best just to really make sure that, you know, I was still healing okay. And she just felt like, you know, University of Utah had been exhausted, and even my surgeon was supportive of me going to the Mayo Clinic. So, I wasn't patient with my recovery. I thought I was being patient, but apparently, I didn't know what patience really is, and so I've learned that.

Boots Knighton [:

I've learned what forgiveness really means and is. Like, not only of forgiving my surgeon, but also forgiving my mom. It was such a complicated grief for me. That's why there's a whole book that I've written about it. And then the other thing that I really have had to learn is just the deep self-love that is needed to get through something like this, and the amount of grace that one has to give oneself in order to make it through something like this. And I couldn't have gotten that from a book. You just have to be in it, and you have to be living it every day with a damn good therapist by your side, and a damn good husband, and support network, and 2 dogs, and 3 cats.

Mary Olson [:

What would you sort of tell people going in or starting on this journey? If there are just a couple of things to tuck away now because a lot of what you've described are things I've heard you say a few times, I needed to go through that. I needed to go through that. But kind of understanding that everyone has their own journey and that they're going to be, you know, there's no maybe shortcut, but what would you kind of tell people as both advice, encouragement, anything else.

Boots Knighton [:

If you don't have a therapist, find one. Even if it's like a support group, like, even a support group, both would be better. But, you know, if you obviously, there's the myocardial bridge support group for the defect I had corrected. There's a bicuspid support group out there. There's a microvascular disease support group. I'm part of that also on Facebook. So, like, find your people even if it's over social media that, like, really understand. But I cannot emphasize enough the importance of a therapist because there's so much medical trauma, like the physical trauma of the body that you will endure.

Boots Knighton [:

Having a therapist as trained in EMDR, It's like eye movement, desensitization and reprocessing. I think that that's right. I did a lot of that with my therapist before the surgery, which helped me, like, be able to stay calmer going into the heart surgery. And then we did a bunch afterwards. And I will tell you that's why I think my open-heart surgery was really not that big of a deal. In fact, when Jason and I were leaving the hospital, I said to him, that wasn't nearly as bad as I thought it was going to be. But we did not do it for my 1st heart catheterization at Stanford. We didn't prep for that.

Boots Knighton [:

And I was severely traumatized from that. Severely traumatized. And so, actually, like, doing pre-trauma work and post trauma work is so important for the body. It's really important for the nervous system. And then that way, your body can get, like, right to the healing part. And then just being willing to ask for help. Like, I know asking for help is, like, kind of almost poo pooed in our society. I hope that's starting to change, but, like, you know, I asked, like, our friends were, they just showed up.

Boots Knighton [:

And I asked for meals because I knew that I couldn't do them before surgery, and then I definitely couldn't cook after surgery. And I just needed that weight taken off Jason so he could focus on all these other things. And so, let your people, let your community help. And if you don't feel like you have a community, I bet you're wrong and I bet you're more loved than you even think you are. Like, you know, we are not alone. We do not have to do things alone. We are social beings, and we are meant to love on each other and be there for each other, but you have to be willing to ask for it and be open to the help.

Mary Olson [:

So, set up a support network ahead of time and then be willing to use it.

Boots Knighton [:

Mm-hmm. I think that's enough. If you're still with us, thank you. Imagine living this. Yeah. Yeah. And so, you know, for listeners, what I have coming up for The Heart Chamber is so exciting. I have other stories of myocardial bridging. I have bicuspid stories, heart transplant.

Boots Knighton [:

nnected with her in August of:

Mary Olson [:

Well, thanks for sharing your story, and thanks again for having me on to do it with you. And, yeah, looking forward to everything to come on Heart Chamber.

Boots Knighton [:

Yeah. Thank you, Mary, for being here today.

Boots Knighton [:

Thank you for sharing a few heartbeats of your day with me today. Please be sure to follow or subscribe to this podcast wherever you are listening. Share with a friend who will value what we discussed. Go to either Apple Podcasts and write us a review or mark those stars on Spotify. I read these, and your feedback is so encouraging, and it also helps others find this podcast. Also, please feel free to drop me a note at Boots@TheHeartChamberpodcast.com. I truly want to know how you're doing and if this podcast has been a source of hope, inspiration and healing for you. Again, I am your host, Boots Knighton, and thanks for listening. Be sure to tune in next Tuesday for another episode of The Heart Chamber.

SUPPORT THE HEART CHAMBER

We rely on the generous donations of listeners like you to bring inspiration, hope and healing every week. Thank you for contributing to our cause.
DONATE HERE
A
We haven’t had any Tips yet :( Maybe you could be the first!
Show artwork for The Heart Chamber

About the Podcast

The Heart Chamber
Conversations on open-heart surgery from the patients' perspective
**The name of this podcast is changing on June 4, 2024. Be sure to subscribe so you don't miss the announcement!** Join Boots Knighton every Tuesday for conversations on open-heart surgery from the patient perspective. Boots explores the physical, emotional, mental, and spiritual experiences of surgery with fellow heart patients and health care providers. This podcast aims to help patients feel less overwhelmed so you can get on with living your best life after surgery. You not only deserve to survive open-heart surgery, you deserve to THRIVE!
Support This Show