The Road to Healing: Boots Knighton's Second Open Heart Surgery Experience
Hey Heart Buddies! So sorry for the delay in the next season. I'm working hard to heal and am beginning to interview future guests now. So much more is coming! Be sure to follow so you don't miss future episodes.
The latest episode of Open Heart Surgery offers an unfiltered glimpse into Boots Knighton's recent heart surgery journey, revealing the raw emotions and challenges she faced along the way. Joined by her close friend Melissa, Boots recounts the series of events that led to her surgery, including the medical missteps that compounded her struggles and the eventual diagnosis that changed her course of treatment. Throughout the episode, Boots navigates her feelings of fear, vulnerability, and hope, providing a candid look at the psychological toll of living with heart issues. The conversation not only sheds light on the medical aspects of her journey but also emphasizes the significance of having a reliable support system during such trying times. As Boots shares her post-surgery experiences, including the process of regaining her strength and the joy of rediscovering her quality of life, she offers encouragement to others facing similar health challenges. Listeners are invited to reflect on their own journeys, fostering a sense of solidarity and inspiration as they navigate their unique paths toward healing.
A special thank you to my husband, Jason, my stepmom, Anne-Marie, and friends, Kelly and Annie, for being with me while I was in the hospital. More thanks to Denise, Rose, Will, and Becky for taking incredible care of our animals, Hamilton, Magnus and Pearl, as well as our house. Thanks to my dad, Ernest, and Anne-Marie, for hosting Jason and me once I was out of the hospital so I could recover at sea level.
I love you. Remember, your heart is your best friend.
Transcript
Welcome to Open Heart Surgery with Boots. I am your host, Boots Knighton. I apologize for the very long break between the last episode and now, but boy, oh, boy, do I have a story for you.
You won't believe what happened. Before I go any further, I want to say this is not medical advice. What is unique to me does not have to be true for you.
I simply share my story to bring you hope, inspiration, maybe something to think about. I just want to be the container for all heart surgery patients giving voice to heart patients around the world. And I will continue to do so.
which was back in the fall of:Thank you, Melissa. And she's going to help me tell the rest of the story. So, Melissa, thanks for coming back on.
Speaker B:I'm really happy to be here and it's so nice to see you on the other side of surgery.
Speaker A:Last we chatted, we were talking about, I had been getting some testing at Cleveland.
They thought maybe a stent would help, not because I had, like, plaque in my arteries, but because there was a pressure gradient through my arteries that they were concerned about where I'd had a previous surgery. And that was what we were all hoping for. They were really hoping I wouldn't need another open heart surgery.
And then I continued to get sicker and sicker and things really fell apart before they fell together. So where do we begin?
Speaker B:Well, you were saying that there was some testing in October that led to the surgery that you ended up having, which was not just Right, right.
Speaker A:And again, I want to just normalize something before we even fully dive in. So spoiler alert. I had to have another open heart surgery as we're recording this.
It was just over 14 and a half weeks ago and I lose my train of thought. And so Melissa is going to help me stay on track. I want to normalize that.
That is a very common after effect of being on the heart lung machine, of being under anesthesia as long as I was under it. And the heart surgery, heart surgery just has a way of disheveling you in, in a myriad of ways. And so bear with me.
Like I said, I, I just could not wait for me to be perfect to come back to y' all and give you an update. I've had so many listeners reaching out, wondering, know how I am. Thank you for that, by the way.
And also, you know, what's the future of the podcast? And so, you know, the whole point is to give you authentic, real stories.
And if I were to wait until my brain is completely clear, then I don't think that's telling the full story. So. Melissa is my very patient friend who can deal with my adhd. So, yes. Anything to add, Melissa, before I dive into October?
Speaker B:No.
I want you to continue giving yourself a lot of grace and being compassionate, because you're not the only one who loses their train of thought, by the way.
Speaker A:Thank you.
Speaker B:We'll get through this together.
Speaker A:Yes, thank you. So October, I was really not well. And so the previous testing had happened in August, and I. I kept messaging Cleveland Clinic.
That's where I've moved all my care to them, even for hangnails. No kidding. But, like, Cleveland's amazing and it's worth getting on a plane to go see them actually, too. Like, I have to have a connection.
But anyway, I. I just developed more and more concerning symptoms, and they were like, we need to get you back here for more testing. Because they had tried different medications, I would get a little bit better, and then I would continue to tank.
I call it going off the cardiac cliff.
But I have a very funny, unique way of saying things that I usually have to, like, get extra specific with them, but most people don't understand all my words. But I. I just have to add a little bit of humor in order for me to be able to tolerate and get through this really hard chapter.
So I call it the cardiac cliff. And so by October, once we got back to Cleveland, I could hardly walk. I was so tired, I couldn't even talk. I could hardly eat because I was so tired.
And. And I'll go through the list of symptoms in a little bit of what ultimately got resolved.
But in the cath lab, they redid all the testing, the echo and then the provocative testing in the cath lab and what that means, provocative testing.
So they went through my femoral artery into my heart, and they on purpose stressed my heart and looked at my coronary arteries, and they put three different chemicals in my arteries at three different times and found that the pressure gradient that was already existing in the lad. There should be no pressure gradient, by the way. It should just be nice, easy flow had actually increased dramatically.
And what they thought they were going to be able to stent was just too long in the artery. Like, the stent wouldn't be long enough and that the.
It would just get compressed because they came to a really hard Conclusion that my previous unroofing surgery for myocardial bridging had actually been done incorrectly, not to completion, and that the myocardial bridge was still there. And that was so hard to hear. I was.
After going through all this testing, I'm laying in the cath lab, and if anyone's out there has had a cath experience, I think we can all attest to the fact that it is not fun. It's painful, it's scary. And for me, I always feel the wire in my heart. It makes my heart jump around. It just is really not a pleasant experience.
I was able to watch my heart respond in real time, and I could see when the artery collapses in on itself. It should not do that, by the way. But for me, it did.
Because of the myocardial bridging, I could see the entire artery disappear on X ray, and I knew that was bad. That meant that the artery was acting completely blocked every time.
My heartbeat, which is just astonishing to think about because that's cutting off blood flow, and that is the LAD is the widowmaker artery. And people die from having complete blockages of their arteries. And so mine was acting completely blocked with every heartbeat.
And here I was still alive, which was just a miracle. But it also explained why I felt so bad. So even while I was still laying there, I. Dr. Ziotta walked up to me. The wires are still in my heart.
And he's like, I'm so sorry, Boots, but we can't stent this. You're going to have to have another open heart surgery. And he went out and told my husband and my stepmom who had come to support us, and we just.
It was just so devastating. Yet I knew that's what I needed. I was already begging for it because I had no quality of life.
But then to be told that in the moment, it was just like such a tough blow, Especially to hear that the first surgery that I'd already endured was done incorrectly.
Speaker B:Yeah, that's absolutely brutal and amazing that you were living through that moment to moment, you know, blockage type of behavior from your artery. That's crazy.
But, yeah, totally explains why you were struggling to even do the most simple tests, daily tasks, and you were really declining and feeling terrible all the time. So at least it kind of gave us an explanation of what was going on.
And that was helpful but hard to hear because obviously it was not what you were hoping for.
Speaker A:Right.
Speaker B:What anyone was hoping for. So that happened in October. And then were there other steps along the way before surgery that were significant.
Anything else that, like, leading up to it, you had to do to prepare or other?
Speaker A:Well, they sent me, yeah, they sent me home to wait for surgery to be scheduled. And that was also scary because I felt like I was going to die at any moment.
In fact, I'd gotten to the point where at night when I'd go to bed, I would just say to myself, I hope I wake up tomorrow. I felt that bad. And then I. In the same.
In the same breath, I would remind myself that, you know, if they didn't think it was safe for me to come home, they wouldn't have sent me home. So, yes, I had these really terrifying symptoms, and I had to put my trust in the doctors.
And that was a real exercise in faith because I put my trust and hope in the first surgeon, and he didn't get the job done. And so here I am having to try again. But this time, they had done three catheterizations on me already.
A couple of echoes, like, they had really come to know my heart. And Cleveland Clinic is one of the best heart hospitals in the world. It's right up there with a couple of others that I can think of.
And I knew that I had the very best eyes on my heart. And the first hospital was more regional, but, you know, that doctor just didn't have the same volume of myocardial bridge cases that Cleveland does.
And so I had to just really look at the facts. Okay, they sent me home. They've seen my heart. They know that, like, I need surgery, but I can probably make it to surgery.
I had to hold that in one hand and then gently hold my fear and all the symptoms and take good of good care of myself and the other. So that's. That was the real work between October and the November surgery.
th or so,:Showering had become a real chore. I had to sit down in the shower. I no longer felt safe to drive my car. I had stopped driving, and I couldn't even go upstairs in my own house.
So, like, there was no real quality of life. And I just let them know that, and they decided to have me come to Cleveland sooner. I was admitted to the hospital on November 2nd for observation.
And that's where the real work began of just being in the hospital, just. Just those Few weeks between the testing and November 2nd was just this constant, like, downward spiral.
So they decided on a Friday that I needed to get there, and I. We arrived there on Sunday, and they just put me right into a room.
Speaker B:Yeah, I remember that decline. That was really scary because, I mean, you were just worsening and. Yeah, I know.
I felt a measure of relief that you at least had medical support and people watching you, people that you were in a place where you could get help if something happened. But I know that was also just an excruciating weight. And you ended up being in the hospital for a really long time.
I think you've told me 17 total days in the hospital.
Speaker A:Yep.
Speaker B:So how many days were you there before surgery?
Speaker A:Nine. Yeah.
Speaker B:That's a long time.
Speaker A:That's a long time.
Speaker B:What were you doing day to day? Were they doing any more testing or.
Speaker A:Oh, yeah. So they. Well, before we get to that, just two little side notes because life keeps on lifing, right? So my. We've had two dogs. We love Blue Heelers.
And in September, between the August testing and the October testing, my old girl, Georgia, died. And it was time. She lived a beautiful life, but still she died in the midst of all of this. And then our younger dog, Hamilton, had a seizure.
FEC is what they call it. I forget. It's like an emboli in his spine. The day before we left for Cleveland and was basically his back. Left leg was paralyzed.
And I had to get on a plane. We had to leave. It was the worst.
And I want to give a big shout out to my dear friend Denise Hardy, who dropped what she was doing and drove up from Arizona and loved on our dog and loved on our two cats and took good care of our house for the month of November and took Hamilton to a. What's it called, you know, the oxygen chambers. Hyperbaric chamber.
And then my other friend, Carrie Potter, gave him Reiki, which is a really powerful way to heal. And so, like, community, like, stepped in and took care of him and helped him get back to about 95%, which is a miracle in and of itself.
Speaker B:Incredible.
Speaker A:I know. So major props to them, but, yeah. So now I'm in the hospital. Hamilton's had a stroke, Georgia's died. It was a little traumatic, and it became. I just.
I remember I entered a black hole where the outside world just kind of stopped existing. And another dear. My.
My very best friend from childhood, Kelly Jones, hopped on a plane from Taos, New Mexico, and came and joined my stepmom, Anne Marie and Jason My husband for the first week in Cleveland. And we were. We were under the impression that surgery would happen pretty quickly.
Like they were going to try to adjust the surgeon's schedule, but I was so sick by the time I got there.
And I had declined so much that they were hesitant to do surgery because they were worried something else was going on with my heart besides the myocardial bridging. I had, like, every symptom of advanced heart failure, and they just didn't want to miss anything. And so I appreciate that about them.
Even though it led to a much longer hospitalization, they were not going to miss anything if they could help it. So I had. Yeah, I had another echo. I had. I had to have another heart cath. A right heart cathedral to look at the pressures in my heart.
I had to see the dentist. That's just common there. That was. Once they, like, were like, okay, we're nearing surgery. We just. They just needed to clear. Clear the. My mouth.
I mean, they literally left nothing untouched, head to toe. So it's very. It's a very common thing there to have your. Your mouth looked at. And then all my veins and arteries mapped. It was really very thorough.
I was very busy every day, and it was exhausting. It was like, oh, my gosh, one more test, one more prick, you know, prick, one more tube. And I don't wish that on anyone.
I don't know how people stay there even longer. I mean, there's a lot of people who are in the hospital for a long time for various reasons, and. And it is a special level of hell.
Speaker B:Yeah. Yeah.
I mean, just being removed from your daily, daily life, your home, your people, and your whole life just kind of shrinks down to that pinpoint of procedures.
Speaker A:To that hospital room. Yeah. To that hospital floor. And Cleveland is so massive. When they did take me anywhere for a test, obviously I was in a wheelchair by then.
I could not walk. And so they have, like, this whole special team that comes to you with their wheelchair and they will you all over the place. And, you know, that was.
That was my adventure. I didn't go outside for 17 days.
Speaker B:That's brutal.
Speaker A:Yeah. No fresh air.
Speaker B:Getting to be winter. You guys had some crazy weather, too,
Speaker A:while you were there.
Speaker B:I think, like, the winter was starting to really kick in, and we were getting lake effect snow and big storms.
Speaker A:Yes, yes. Which was beautiful. The first half I had a horrible view. The second half I had a beautiful view, which really did make a difference.
And I'll get to that in a minute. But those Nine days were really hard. And I just special shout out to Kelly, who dropped what she was doing.
She's a professor at a university, and she brought her work with her and would work in the hotel room for half the day and then come sit with me for the rest. And she was so bummed she couldn't be there for the surgery because she had to get back, back home. But it made all the difference.
And so I asked my stepmom, Ann Marie, today, prior to this recording, like, what would she like to add to this conversation? And she really highlighted that. She highlighted the importance of having more than one person to be on the advocacy team.
And so I had her, I had Kelly, and then I had Jason, and they took turns sitting with me. That way, someone was always in the room ready to receive a doctor or a nurse or a physician assistant, which seemed like almost all day long.
And she said that was so important because it gave the other two time to walk away and regroup, get hydrated, eat, and come back. And it just didn't feel like, you know, all the weight on one person.
Speaker B:So she.
Speaker A:She said that was really important.
And so for those listening, if you are facing surgery, I mean, take who you can get to go with you, but if you can have more than one person, coming from the caregiver's perspective, from my stepmom, having more than one to help carry the weight is really important.
Speaker B:Yeah, that's really wise, because it's hard on the caregivers, too. And I. I think it's easy for people to forget to take care of themselves so that they can provide support.
Speaker A:Yeah. Yeah. And it really is important to stay hydrated.
I mean, I feel like that's kind of turned into, like, this do, do phrase that everybody says, but it really is easy to. She said it was. It can be easy to forget to take care of yourself when it really is life and death, like heart surgery.
And so the whole put your mask on first before helping others. What a helpful phrase that is. And you can't serve from an empty cup.
Speaker B:So as they were getting ready to move you towards surgery, what did the. What were they saying were the potential things that they might do while you were under? What was their kind of surgical plan?
Speaker A:Well, it was dumpster fire, so I.
Speaker B:Everything's a mess. Don't worry about it.
Speaker A:Oh, gosh. We got a plan for all this stuff. Yeah. So I remember it being a lot. It was a lot. So Dr. Unai, who was my ultimate surgeon, love that man. Oh, my gosh.
He deserves like everything in the world. He came to me a few nights before my surgery and bless him, he had been in a really hard surgery all day.
I was told it was a, you know, kind of a high profile patient and that it was a really complicated procedure. And he still came to see me afterwards to meet me for the first time and explain what may or may not need to happen. And I'll never forget that.
And it was like 7:30 at night too. And I looked at him, was like, aren't you hungry? And he's like, I'm quite hungry, but I wanted to come see you first.
And I was like, do you want a banana? And I gave him my banana off my hospital tray and he took it. He was like, don't you need it?
And I was like, I can just order another one banana at least you can.
Speaker B:Welcome, here's a banana. Yes.
Speaker A:But anyway, there was concern that. So all my arteries, all my coronaries are very small. They called them little tiny lady coronaries. And I am a little tiny lady.
And so that probably has made my little tiny coronaries not as much of an issue as maybe it would for you. You're taller than me. Almost the entire general public is taller than me. And I'm just very petite. So they are still considered very small.
Hypoplastic is the medical term. And so they were concerned that they'd get in there and find that this lad also just needed to be bypassed a bigger artery.
Also in the angiogram you could see that whenever my heart would contract, not only would it cut off the blood flow, but my artery was very. They call it tortuous, which is just such a bananas term. Like the medical terminology is so dramatic.
Can we just call it twists and turns, like tortuosity? That is sounds so dramatic. And it just flakes flares the nervous system when you hear it. So but that's what they called it, tortuous.
And so it looks corkscrew. It looked like a corkscrew. And there were some real tight bends in the artery. And so those were also causing blood flow issues.
And so they just weren't sure if once they cut away the heart muscle, if that artery, once it was freed, if it would still have those kinks or not. So they had. That's why they had to map my veins and arteries so they would know where to harvest for a bypass if needed.
So that was one of the possible outcomes that he educated me on that night as he ate my banana. The other one was I have a bicuspid aortic valve, which is an addition. Another congenital defect that I. So I have the myocardial bridging.
That's one congenital defect. And then the bicuspid aortic valve is another. The small arteries are a third. So the bicuspid valve is starting to leak.
So if you're new to all of this medical speak, let me just take a step back. A bicuspid valve. So our aortic valve should have three cusps that open and close like a Mercedes. It looks like a Mercedes sign.
And mine has only two cusps. And Melissa, ironically, has just one cusp. And we didn't even know that about each other until well after we met. So we're so special.
Speaker B:Our hearts found each other.
Speaker A:Our hearts found each other. Melissa has not had surgery, and I'm hoping she doesn't.
So for me, it is starting to regurgitate, and that is a common outcome of the having a bicuspid. So they weren't sure if once they got in there, they were going to replace it or not. Additionally, my tricuspid valve. Yes.
That's a separate valve than the aortic valve. It is also starting to regurgitate. I don't know why. Probably because everything else is a dumpster fire.
Speaker B:Yeah.
Speaker A:I really shouldn't call my heart a dumpster fire. Yeah.
Speaker B:What is happening?
Speaker A:Lots of things are happening. So they just weren't sure about any of that. And so I had to sign all these consents that evening with UNAI of like, we might bypass.
We might replace these valves. We're going to not use mechanical because I'm athletic, and if you're.
You use a mechanical valve, then you're on heart blood thinners for the rest of your life. And so. And I wanted to get back to mountain biking and skiing and all that. So Dr. U.
And I was like, we're going to do a porcine valve and had to sign all these things saying, yes, yes, do that, do this. It was crazy. And then he was like, I can't operate on you tomorrow. I have to wait till next Tuesday. That was on a Thursday night.
Speaker B:Yeah.
Speaker A:So then I had. So you have a lot of time
Speaker B:to think about all the potential things that might be about to happen in your heart.
Speaker A:Right, right. So that was that. It was a lot.
Speaker B:So how did you feel going into surgery? I mean, for people who might not know your whole story, what number surgery was this for you? And where was your headspace as you were preparing?
Speaker A:This was my second open heart surgery, my fourth time having my chest Cut on.
You would have to go all the way back to the very first episode to listen to my original story, but it was just my second open heart surgery, and I look like I've been in, like, the worst knife fight. Just, there's just scars everywhere from neck down to belly button. It's really. I look tough.
Speaker B:You are tough.
Speaker A:So.
Speaker B:So how are you coping with this? How was your.
Speaker A:Yeah, I'm pulling up some notes that I, I, I read or wrote down. Excuse me. That I'm going to read. Did something I didn't think I'd do, which is I requested spiritual care. And I'm not religious anymore.
Broke up with religion a while ago. And I. But I am in the. Of the belief that there's a power much greater than us.
And I just, I knew we needed a third party to come in and talk to Jason and myself and just get us out of our heads. And I, I requested it without even asking Jason. I said I need somebody. I also had my therapist on speed dial. You and I were texting a lot by then.
Kelly had to leave and go home. But Sebastian, I'll never forget him. He came in on the Saturday between Unai's first visit and the surgery from spiritual care, and he was amazing.
And it took a few awkward minutes to kind of figure out which angle we wanted to come from. He was, he's trained in all. How do you say it? Religions, thought processes, perspectives.
And something I've been studying recently are the Stoics and the Stoic philosophy. And so I mentioned that to him, and it happens. Happens to be one of his favorite things to talk about, even though he's very religious.
I forget which. Which tradition he follows now. David, it doesn't matter. And he was able to reflect back to us the incredible strength that we have.
He listened to both of us kind of debrief the last few days and how hard it had been, and he was just able to say, you know, like, you keep pushing on. You refuse to give up, even though it has been so scary. And I just forget that when you're so deep in it, you, you just forget. It's hard to reflect.
It's really hard to reflect when you're so miserable.
But I, I just want to encourage listeners, like, no matter what you're going through in life, having that third party reflect back to you what they see in you, and to validate your experience, it helps regulate the nervous system well.
Speaker B:And I'm just thinking that, you know, it might feel really passive. Your situation felt pretty helpless.
I'm assuming, I mean, that might be incorrect, but just to be in a hospital bed, to be, you know, at a point where physically you really couldn't do much but to emphasize how active all of that actually was.
Like, every day you were taking breaths and you were surviving to get to that step of surgery which you were hoping would open life back up to you again. And. Yeah. So I'm curious to hear how moving into the surgery, the day of surgery, and what came after, how that all kind of came together.
Speaker A:Yes. So he. He got me out of, like, this, like, really scary headspace. Forlorn. So the day of surgery, I just got really quiet.
You know, people were coming in and out and preparing me for things and talking about the. The af, where I would go after the surgery and all of that. But I knew I had nothing left to lose, and I'd come to this place of deep surrender.
I knew the chances of dying were low, but they weren't zero. And I. I chose to focus on the 90%, 97% chance of surviving instead of the 3% chance of dying. And that was just my mantra all day.
And I got really curious and I found that this skill of curiosity, it is a skill, has served me so many times in my life rather than getting angry. And believe me, I've been a little ticked off at times about this whole journey.
I've had all the normal, healthy responses a human being would go through. However, where I'm most often land is in gratitude and curiosity. And the curiosity has been a. What is this trying to teach me?
Or what will I allow myself to learn and be. What will this be like? How much better will I feel? What are the possibilities? And I just open myself up to the possibilities.
And I knew either way, I was going to be fine if I died. You know, I. I do believe, like, there is some continuation. I don't know what it is. I don't have to define it.
It's not something that, like, I bring my wrists over, but. And I also knew if I lived, that they were going to help me somewhat.
Like, Dr. My doctors said they were hoping for a 70% improvement in quality of life. And that sounded amazing because I had hardly any. And so I was just like, okay, let's just see how this works out. And I was not scared at all.
I went to bed the night before surgery, cool as a cucumber, really was not scared at all. And woke up the next morning. I had to get up early and do like, the whole shower.
You have to do like you have to take a shower the night before and the day of with, like, this weird, funky soap. So I did all that. And by then, my. Another really close friend of mine, Annie from Milwaukee, had driven.
Driven over to Cleveland in a snowstorm to come be by my side with Jason and Amari for the surgery part. In a snowstorm. A really major snowstorm.
Speaker B:Yeah.
Speaker A:Thank you, Annie.
Speaker B:Incredible.
Speaker A:And they were all pretty emotional, and I was just like, I'm going to be fine if I die, I'm sorry. But either way, I'm good. Yeah.
Speaker B:So that power of imagination can be really helpful. I remember talking to you about that when you were really sick. We were trying to imagine you doing things that you want to do in the future.
And we were trying to picture and visualize that possibility just in. I mean, I think that can be a. A lifeline a little bit to move you toward healing, knowing that something that hopefully better things are coming.
Yeah. But that possibility always exists that you won't get there. And that's scary, too.
But it seems like you were in a really good, calm, ready position for surgery to happen and. Yeah. So how did it all go? What happened?
Speaker A:I laugh because.
Speaker B:Was it all the things he told you? It was everything you expected.
Speaker A:It was much to do about a lot of nothing, minus the myocardial bridging. I ended up not needing the bypass, thank goodness, because that would have just added to the whole complex healing situation.
I still have my leaky valves. They aren't leaking enough.
And so they promised me that should either of them need to be replaced down the road, I'll more than likely need my bicuspid replaced. We're hoping the tricuspid hangs in there, but they can do it through my femoral artery and I won't have to be opened back up.
I would like to put everyone on notice that I will not be having another open heart surgery no matter what. And so should things tank again, for whatever reason, I'm palliative care. Not interested. No, thank you. A second surgery was no joke.
And I've got a dear friend named Bill. Hello, Bill. Who's had four open heart surgeries. And that man is. Kudos to you, Bill. Two was enough for me. So, no, it was so, like, chill.
Like, this guy came to get me from my room and rolled me down to the or. Jason was able to walk with me part of the way and left Anne Marie and Annie behind to go to the where the families wait and said goodbye to Jason.
And then they rolled me into room or 61. I mean, this place is so big. I can't remember how many operating rooms they have, but they have at least 61. And.
And everyone was just so warm and friendly and all wanted to know where I got the name Boots. I bet I told that story. I mean, I told that story 17 days straight to like multiple people, which is fine, but they were just the best people.
And the profusionist, I'll never forget him. He was tattooed head to toe and so kind and he just looked like he was ready for a concert instead of a profusion, instead of to be the perfusionist.
And I looked at the heart lung machine and I didn't get a good look at it the first time because they had to stop my heart again. My heart has now been stopped twice, which messes with you. And it looked like a bike rack and a heat radiator.
You know, the old fashioned heat radiator radiators had, had, had come together to form a whole new machine. That's what it looked like. It was massive. And I was looking at it and looking at him and the nurses said, what music do you want to listen to?
And I said, rage against the Machine just seemed like just the most appropriate music in the moment.
Speaker B:Sounds correct. Yes.
Speaker A:So the first song that comes on is Wake up and that's the same. That is the same song that was used at the end of the Matrix.
Speaker B:Oh, gosh. Yeah.
Speaker A:When Neo makes the phone call to the machines and he's just telling him like it is. And he said he's going to show the people a world without borders, without limits.
And I didn't think about that scene only because until my surgeon walks in, Dr. Unai and says, oh, this is Reggie gets the machine sick. And here he's like very prim and proper Japanese surgeon, like very by the book. Doesn't show a lot of emotion.
And he was like all excited that I chose this music and he reminded me of the scene. And.
And so I am like thinking of the scene and then I drift off to sleep and what was crazy was then, you know, I wake up in the ICU hours later and I have tubes coming and wires coming out of everything. And it was like, you know, when they're growing the people in the Matrix, it was a little. Everything added up a little too. Yeah.
Weirdly, it was just so intense.
Speaker B:I like that your, your care team was all in on your music choice. That's a good sign.
Speaker A:They all laughed and they said, we didn't expect that coming from a boots.
Speaker B:From a petite Boots. Yeah. Well, I. It doesn't surprise me. And it was a good trip, so. Okay, so you wake up and everything's great, right? No.
So I know the recovery portion is no joke. I was.
I'm always happy to be able to, like, get my first text from you after you come back from all of this intense intervention because, you know, we'll. I'll text with Jason and get the updates and everything, but it's always best to hear your voice coming back through.
It's like someone goes out into space for some. Some time and you lose contact for a minute. So it's always a relief to get that text. But, like, how we're. What were you feeling after?
Were you surprised by what had actually happened and like, physically, how. How did it go for you?
Speaker A:I would, I wish to possess the power of some existential power to help me understand what really happens to the soul. I have yet to get a good explanation on that. My heart was stopped for over two hours.
Obviously the perfusionist kept me, kept my blood circulating and the oxygen circulating through that bike rack meets heat radiator thingy. So I wasn't. My brain wasn't dead, but my heart was stopped.
And I, I still have this deep existential yearning, longing, curiosity for where does the soul go?
Speaker B:Yeah.
Speaker A:And I, I still don't think I have fully at, you know, near 14, 14 and a half weeks. I don't feel like I've caught up with myself yet. It's a very out of view.
Speaker B:Is outside of you still.
Speaker A:Yeah, yeah. Like, there's the, the human walking and then the shadow behind.
And I just, I don't, you know, I just feel like my soul's like, hey, I'm still trying to catch up. My dear friend Lucinda, who's also had open heart surgery, she was one who gave me those words like, my soul hasn't caught up with me yet.
And I was like, yep, that's it. Thanks for those words. That's how I feel. But when I woke up from surgery, unfortunately, my pain was not managed very well.
And they were so because I had vomited so much after my first open heart surgery. And I put the fear of God in them about that. I don't know if they were afraid to give me too many pain meds, but I never vomited.
I might have dry heaved, like, once after this recent surgery, but unfortunately my pain wasn't managed. And it took some real theatrics to get that under control.
And my stepmom did say that I kept asking if I was gonna die because the pain was that severe and I'd broken my leg.
Speaker B:Yes.
Speaker A:Seriously. The other unfortunate thing was I could see the patient across from me, and that patient was. I still don't understand why that was.
I could see her very well, even in my, like, stupor of being. Coming out from anesthesia, and her chest was still open. And I later got clarity on that. It was really traumatic for me.
It was just such a strange way to wake up.
And sometimes when you have heart surgery, if your heart swells too much or the chest cavity swells too much, it's not safe to close up the cavity and you have to let the swelling go down. And that was likely the case with this woman. Wow. But it really rattled me for days, and I ended up having to request spiritual care again.
Getting on the phone with my therapist and just processing that. I just had no boundaries to block it out, you know, I was so vulnerable.
Speaker B:Right. Yeah.
Speaker A:The other, like, crazy side piece was before surgery, I requested to go back to the seventh floor of Cleveland Clinic because I preferred that floor better than the first floor I started on, and they told me I couldn't. That floor was just more for minor. Minor heart cases. And mostly because they didn't have a bone saw. And my curious mind needed to understand why.
Speaker B:Yeah.
Speaker A:And I. I was like, that makes no sense to me. And they're like, well, sometimes post open heart, you can develop serious complications and need an immediate bedside open heart surgery.
And we need to be able to cut your. Saw your chest back open. Oh, my God. So I. Yeah, so only the fifth and sixth floors at the Cleveland Clinic have a bone saw.
Speaker B:So
Speaker A:that just really. It just added a level of heaviness to the moment. Luckily, I never needed the bone saw, but.
Yeah, but I. I mean, remarkably, things went somewhat smooth. I mean, I was in the hospital for another. Let's see, I was in the ICU for. I read it 26 hours, and then. And that was just so wild.
That whole thing was just. The cardiac ICU at Cleveland Clinic is. I've never seen anything like it. Absolute pros. My nurses were amazing, so kind, and took such good care of me.
I heard everything in there. I heard patients coding. I heard patients being naughty. It was. It was just such a wild experience. Only curtains separated, all of us.
And so I was in a really vulnerable position to hear all of this. I have since processed it with a medical. You know, my. My therapist, mental health professional.
But despite everything I heard, those nurses knocked it out of the park. By day three, I Was zooming around the step down unit with my little walker and already could tell that I was going to be okay.
Speaker B:Yeah.
Speaker A:I compare it to a parking brake. If you've ever tried to drive your car with a parking brake on, you can still drive, but it doesn't go very well.
You go really slow, and it feels really labored, and you're, like, going to destroy your car. And that's how I felt leading up to the surgery. Like this really tight parking brake was on my heart. And already on day three, I had.
The parking brake had been lifted.
Speaker B:Did that give you a thrill? Were you like, oh, yeah. Lift your spirits?
Speaker A:I was like, man, I'm gonna live.
Speaker B:I'm gonna live. Yeah. And you fought so hard to get there.
Speaker A:Yeah. Only complication I developed was fluid in my lungs. It's very common.
It's so common that at the Cleveland Clinic, they have a team, a traveling team, a doctor and nurses and a pa and all they do all day is stick a needle in people's lungs and drain the fluid out. They go from room to room, and Dr. Marsh came to my. We decided on day seven that the fluid was not resolving in my lungs. Or maybe it was day six.
I can't remember. It was forever.
Speaker B:You were close, discharged.
Speaker A:Yeah, but I just. The fluid, they. Because they take chest. Chest X rays each day to make sure that things are okay. And it was just too much fluid to let me go.
So Dr. Marsh and his team came in, and it was hilarious. They just put me on the side of the bed, explained to me what they were going to do. Numbed my back, where they were going to put the needle in.
Put the needle in, let the fluid drain out for 15 minutes, and then they left.
Speaker B:Bad jobs you never knew you could have.
Speaker A:They got half of a Nalgene bottle for the hikers out there or 500ml out of my left lung.
Speaker B:Impressive. Yeah, you always have to. There was about 200 extra at everything you do, but it's.
Speaker A:I tell you, I just. I'm an overachiever.
Speaker B:I was really worried about you at that point because you were texting me, and you were really miserable and worried. And then I texted Jason, I'm gonna throw him under the bus for just a second. Because he was like, she's gonna be fine, but she's really over it.
Just, you know, he was the one telling me like, no, it's actually going to be okay. But I was like, what's happening? It sounds terrible. And he was like, no, he's just Done being here.
Speaker A:Yes. We were both right to find out
Speaker B:that that was accident in the end because I wasn't sure who to believe.
Speaker A:That's fair. That's fair.
Speaker B:It was something like that. I'm paraphrasing. So sorry, Jason, if I misquoted you.
Speaker A:Well, and he got to leave early, so. Right.
Speaker B:Yeah. He was going ahead to prepare the way for your next adventure.
Speaker A:Right.
Speaker B:You did have, like, a massive post surgery adventure, which is the coolest thing I've ever seen someone do after surgery. I can't even believe you guys went and did all the stuff you did, but you started.
Once you were finally able to leave the hospital, you spent some time recovering with family. You want to tell how that went for you?
Speaker A:Yes. But before we leave the hospital, my stepmom wanted me to name all the things I did that kept me semi sane for 17 days.
Speaker B:Good list. All right.
Speaker A:And I'm gonna say semi sane because semi. Yeah, I did fall apart a couple of times. I actually even cried. I cried.
Speaker B:That's big for you.
Speaker A:A couple of times. That's really big for me. Takes a lot to get me to cry. Let me get my list. Jason did tell me to say, and I will totally throw myself under the bus.
I asked him today if he wanted me to add anything from him, and he said, well, heart surgery has not resolved my tendency to leaving things lay around the house.
Speaker B:Oh, man.
Speaker A:So I know.
Speaker B:So that isn't related to. It's not your heart.
Speaker A:It's not a symptom.
Speaker B:No.
Speaker A:Yeah. And I was like, okay, I know what I'm doing. After I finish recording this, I'm gonna go pick up after myself.
So these are all the things I did to stay semi sane. Stressing on the semi part, I wore my own clothes unless they absolutely needed me to wear a hospital gown.
So I took all my own cozy clothes, and that really made a difference when, as much as possible, I got outside food. I will say Cleveland does the best they can with hospital food. It's pretty impressive.
Speaker B:Yeah.
Speaker A: However, it is a:It really did make a difference color. So the walls were white. The hospital gown is white. Everything's white. The floor is white.
I. I needed more color to break up the mundane aspects of, like, my visual aesthetics. And so I. Friends had gifted me adult coloring books and with lots of swear words and hilarious, you know, Little phrases.
And I brought my own coloring utensils and even bought other color supplies and just colored a lot.
I even gave a lot of the what I colored away to the house cleaning staff, which actually got me in a little bit of trouble because it all had swear words on it.
Speaker B:Oops.
Speaker A:But it was mostly hilarious. Bundle care. So this is a medical term. I don't know why they call it, call it bundle care, by the way.
So I really got tired of being woken up in the middle of the night and I kindly requested that they stop doing that and they could. So you can ask for this. This is a way to protect your rest. Hospitals are notorious for not allowing you to rest, which just baffles me.
So I requested bundle care.
So that meant that the last time they took my vitals was right when I wanted to go to bed, which for me was around 9pm and they could not wake me up again till 6am that was not possible. What's that?
Speaker B:I said, it's so good to know you can request that. I never.
Speaker A:Yeah, most people don't know that. So I obviously right after heart surgery, I couldn't have that. They, they did need to keep me, which is fine.
But like, by day three, they let me go back to bundle care. That also meant I refused to have the early morning blood draw. They are so rude about it. Even in Cleveland.
They just throw the lights on, they talk really loud and they usually come by 5:00am and I, I just put my foot down. I was like, I'm the patient and if it delays, like the doctor coming in by a little bit, so be it.
I'm not going to be woken up in such a dramatic way at 5am and so you really need to like, ask from a more team prop, like a thoughtful team approach than say, I am the patient. Nuance matters. But, you know, I just be like, is there any way we can use my IV to get the blood out and so I don't have to be poked again?
And is there any way that, like the night nurse who's about to go off shift can they take my blood right before they leave? And that's how I, like, nagled my way into that. So every hospital is different, but we are the patients and we do, we can advocate for ourselves.
Speaker B:Worth asking. Worth advocating.
Speaker A:Having a good view. Absolutely.
Speaker B:Key.
Speaker A:You know, you are given what you're given as far as a room. But I did say, hey, when a room opens on the other side of the hospital that overlooks, they have the most beautiful circular pool.
It's like a donut with beautiful trees of fall. Colors were coming in. I I asked to be moved and they helped me with that. I had noise canceling headphones. I mostly kept my door shut. A lot of rooms.
I noticed patients kept their doors wide open. And here's what happens. You open yourself up to hearing trauma and so you hear all the coding, the code blues.
There was other codes for mischievous patients or like kids that need extra help.
And there was a few times where my door was left open and unfortunately like I heard a person die two doors down from me post post surgery for me, which was really hard. And I heard I definitely still heard more code blues than I wanted to hear in 17 days.
But it really is important to try to eliminate as much outsour outside noise coming in because it is just so much for the nervous system to process when you're already just trying to maintain your own sense of everything.
Speaker B:Yeah.
Speaker A:Saying no to house cleaning. They can be really intrusive. They mean well. I loved every house cleaner that came in to clean my room. I absolutely adored them.
They are the sweetest people. And some days it was just too much and I just could not have anyone in my room. It is okay to tell them no to all the people who sent me flowers.
You also, like helped soften all the white. My friends George and Anita, everyone at Hamrick Berg, all of Boots Daughters.
I am named after a human named Boots who has now passed on, who has amazing daughters. They all sent me flowers. Feel like I'm forgetting somebody. I know I'm forgetting someone.
I'm so sorry if I'm forgetting you, whoever you are, because I can see other flowers. But it really did make a difference. Asking for spiritual care. Like I was talking about Sebastian.
I also had another nurse who came and gave me Reiki one day. And she helped me remember that I was safe in my body. I had really come to not trust my body. She was really impressive.
My stepmom imported hotel supplies because you're only given like cheap soap to clean yourself to clean your hair with. And she brought me soft cozy towels to borrow from the hotel. I hope I don't get us in trouble with the hotel nearby Cleveland.
But she brought me a hairdryer and like fun lotions and soaps and stuff. Cause I just didn't think to bring that with me. And the towels that they give you in the hospital are so rough.
Speaker B:Yeah.
Speaker A:And here is the last two are probably the most important. An eye mask and connecting with other heart. Heart patients. Both there in person.
And over the Internet, thanks to this podcast and the people willing to be seen and heard and share their stories. I have a lot of heart buddies around the world, and that was really invaluable.
Speaker B:That's so great. What a great list. I wonder if you could even put that in the show notes or something. For people who might be heading into surgery.
Might be some good tips for people to stay sane or semi sane, as you say.
Speaker A:Semi sane. Yeah. You're allowed to go a little crazy because the whole thing is crazy. I mean, think about it. Heart surgery is really crazy.
Speaker B:It's crazy. It's crazy. They can keep you alive. It's crazy. You can recover. All of it is insane. But here you are.
Speaker A:Here I am. And as Melissa alluded to, I eventually did get to leave. And I will never forget the first breath of air, fresh air I got.
It was 30 degrees outside, and I didn't care. And I just stood there and they were doing construction work on the clinic itself, and there was like, cranes nearby and the wind was blowing and.
And I didn't care. I just stood outside. It was like a gloomy day and just kept breathing in the air. And I was like, wow, I did this thing.
So I left with all my symptoms resolved.
And I just want to read them off because if you hear any of these symptoms and you are thinking about heart surgery or something's up with your heart, just know that all of these could mean, potentially mean something's up with your heart. I'm. I'm getting my clarity back. I really had, like, lost my ability to think. And I felt like I had lost, like 30 IQ points prior to surgery.
I no longer have chest pain. I no longer have shortness of breath. I no longer have upper right quadrant pain, which had become so intolerable.
And my team said that I likely had hepatic backup. In fact, they saw some of it on imaging where blood was backing into my liver. I have the energy to eat again.
I can run up the stairs to my second floor of my house. I don't tire when I talk. I clearly. I just keep talking. This is like the longest episode I have been. I've recorded in a long time.
Cause I have the energy. So sorry about that. All my voice hoarseness has gone. I had really developed issues with speaking. And it was just because everything.
The fluid retention was so severe. I was so overloaded with fluid that it was constricting my voice box. I'm no longer dizzy. I no longer shake when I'm trying to do anything.
I would have this crazy shaking. My. My body just could not tolerate any amount of exertion. Which also meant I was extremely weak. That all is gone. I have very little fluid retention.
I have just a little bit of minor retention. Cause I do have a little bit of heart failure. But I'm on such a minor dose now of diuretic and I've lost £25. All of that was fluid.
And then mostly I have a sense of hope. That's what this surgery resolved. And so in summary, the surgery I had was unroofing. For myocardial bridging.
They cut 4, 5 centimeters of the front of my heart to relieve the pressure off of the lad. I should have said this sooner, but I am now walking around with the surface of my heart filleted open. And that has taken some time to heal.
But that means that the LAD is no longer being compressed. The blood flow has returned through my lad. The pressure gradient is completely resolved.
And that's why every symptom I just read off has been resolved. And hopefully this means that my two leaky valves won't get worse.
Hopefully it resolves my heart failure and I can get back to riding a bike and skiing and doing all the things that I love to do.
Speaker B:That'll be so wonderful. I'm so happy for you.
Speaker A:Thanks.
Speaker B:So thankful for all of those surgeons and great care providers and wow, it's been amazing.
Speaker A:It's a lot and it's hard to tell it in such a succinct way.
And you know, you alluded to me leaving and I went and spent time at sea level for a long time, which was because I live at 6,500ft on the border of Wyoming and Idaho. And being at sea level I think was key to me healing so rapidly. I am healing at a pretty rapid pace and I'm so grateful for that.
But I did spend three weeks in my hometown on the coast of North Carolina and then Jason and I took a 30 day van trip. We have a camper van and we went all along the Gulf coast and over to Big Bend national park and up.
We took 30 days and went and saw every bird we could see and every pretty place and just reconnected with each other and. And Hamilton, our dog and just had the best time and 30 days behind the windshield. I needed all 30 days to process what the heck just happened.
So I am going to be writing. I keep saying I'm going to be writing on substack. That is still a goal.
I just have to control my lack of Ability to concentrate a little bit better before I can, like, get it all down. But I promise I will do that. And I will include what helps me stay sane, semi sane. The road trip. All the things.
So you can take it under advisement to help you on your path. I think I've said all I need to say.
Speaker B:It sounds awesome. You're just such a rock star. I want to know. Yeah, I would love some stub stack posts, please. With various birding highlights. Just episodic, short.
Speaker A:Yeah. You got reports whether you wanted them or not. A lot of people did pictures. I saw whooping cranes.
Speaker B:You overdid it. I know. A few times.
Speaker A:Oh, my gosh. I. Yeah, I birded too long one day. It was hilarious. It was like. And I did check in with Dr. Ziata. Shout out to Dr. Z. My main dude at Cleveland.
Love that guy. We had a check in with him on December 24th from our van. And he was like, where are you? Hamilton was part of it. He was on video and. Yeah, we were.
He got to see us in our van.
Speaker B:First time he was having a post op call with someone and they were in their camper van. Yeah.
Speaker A:He was like, how far out are you from surgery? It was like a month and a half. He's like, and you're zooming all over the country in a van? I was like, yeah, why not?
It didn't occur me not to like, hey, I survived. It was like the. I survived paperwork.
Speaker B:Right. Don't do it. They might add it now, but I don't think it was. I think it was perfect thing for you guys to do. Perfect.
Speaker A:Yeah. So don't stop living and try to find joy every day after surgery because you just have gone through an epic.
I'm speaking to the people who have just had heart surgery. You've got to get out there and live the best way you know how.
Because what a gift to be able to say, sure, I've been diagnosed with this thing, but there was a way to help. Is the greatest way you can honor all the care providers and your family and friends is to get out there and live.
Speaker B:That's beautiful. You're sure showing how it's done.
Speaker A:So the plan from here, I have heart patients who want to come on and tell their story. And I plan on interviewing some of my care team and explaining how they're helping me heal. Cardiac rehab has been invaluable.
You, Melissa, your friendship has been invaluable. I do think that I'm doing as well as I am because of you and my other friends. And lucky me, I'm the luckiest unlucky person. Well, you're very lucky.
So my point is I'm this is the start of a new season. Season. I don't know how it's going to look yet. Bear with me.
But my hope is to get back to every other week and I'm working on a book and substacks, all of that. So hang around, be sure to follow, be sure to share and I would love to hear from you. My email is in the show notes.
Let me know how you're doing, what you want to hear. And to all of those who've reached reached out that are listeners, thank you. Your your words mattered. So thank you, Melissa.
Thank you to all who listened today and know that you matter, your heart matters. You are so loved. And don't forget to advocate for what you need for your health because you are the CEO of your body. So until next time, I love you.
I am thoroughly excited, exhausted now and I'm gonna go rest.
Speaker B:Yes. Time correct. I think it's everybody. Everyone just take a nap. Listen to the.
Speaker A:Everyone just take a nap. Yeah, whatever you're doing, just take a nap and. But drink water first and then go take a nap.
Speaker B:Yeah, maybe not if you're driving, but other than that, go for it.
Speaker A:Pull over. Okay. This has been fun. I love you all.
