Accepting a Heart Diagnosis: Strategies for Processing, Healing, and Thriving Post-Surgery -37
In episode 37 of the Heart Chamber Podcast, host Boots Knighton shares her personal journey of being diagnosed with a heart condition. She discusses the challenges she faced and the strategies she used to cope, including seeking support from friends and professionals, undergoing therapies like EMDR, acupuncture, and reiki, and embracing the power of community. Despite the initial shock and medical gaslighting, Boots emphasizes the importance of emotional processing, seeking help, and accepting the situation with radical positivity. She highlights the impact of her heart journey and how it has transformed her perspective, even leading her to start the podcast and speak at TEDx. The episode resonates with those facing health challenges, offering hope and inspiration.
If you are looking for something specific - here's where you'll find it:
04:56 Boots reflects on her head injury and the positive impact on her life through reframing. She compares the recovery to a deep soul excavation and finding forgotten items during spring cleaning.
09:00 She shares her journey dealing with trauma and seeking professional support for coping and managing heart diagnoses.
11:16 A heart diagnosis takes time, needs support.
15:04 Accepting birth defects, overcoming grief, and sobriety journey.
20:24 Boots is grateful for the support of various healthcare professionals and alternative healers during their health journey, and wishes she had a better understanding at the beginning. She recommends a podcast for others in similar situations.
https://player.captivate.fm/episode/af6e5d74-4767-4519-b339-496a97814d87
https://player.captivate.fm/episode/ad483bd7-269d-447a-918d-f8fac3aa8b78
23:56 Embrace challenges, listen to your soul, and please share this podcast.
25:38 Thanks for your time and support. Please subscribe, share, review, and provide feedback. Email me with your thoughts.
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.
Join the Patreon Community! The Heart Chamber zoom group starts in September 2024.
**I am not a doctor and this is not medical advice. Be sure to check in with your care team about all the next right steps for you and your heart.**
How to connect with Boots
Email: Boots@theheartchamberpodcast.com
Instagram: @openheartsurgerywithboots or @boots.knighton
LinkedIn: linkedin.com/in/boots-knighton
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Transcript
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Boots Knighton [:So, what do you do when you are diagnosed with a heart condition out of the blue? That's what happened to me at age 42, and I dive into what I did when I was diagnosed in this episode. I hope you find this episode helpful and a balm for your worried heart. Let's get right to it.
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 [:Hello, and welcome to episode 37. I am so glad that you're here. I wanted to share with you today, this is the 2nd installment for Heart month. I am doing a monologue each week just coming at you with my experiences, what has helped me process, work through, and heal, and then ultimately thrive post open-heart surgery. And today, I actually wanted to talk about what to do should you be diagnosed with any kind of heart issue. But dare I say it, this could be for anyone facing any sort of health challenge. Because if we have the privilege of living long enough, we will have something happen with these meat suits that we carry around. And I hope we all have the privilege of aging and then get to experience all the excitement that comes with aging. I have decided that aging is the most extreme sport there is. I'm not exactly old. I'm also not exactly young. I am 45. I will be 46, March 18th, which just doesn't seem possible. I feel younger than that, and I think I feel younger than that because I really have put my health as top priority. And I want to walk you through a few of the things that I do.
Boots Knighton [:I actually was forced into my health journey really more officially in 2018 when I had a ski accident, and I hit my head. It's cool that I have to really think about it now because that just means that I'm done with the story and I've moved on. It's just so great to, like, not even give my brain a second thought anymore, but I was working. I was a ski instructor, and I was skiing with clients, fell and hit my head in 2018, January of 2018, and had a really difficult recovery, multiple years, 2 years. Saw so many different specialists. My husband took me to Utah, Montana. It was just really crushing.
Boots Knighton [:When you hit your head, you hit your ability to think. You hit your gut. Totally destroyed my gut. It really messed up my vision, my balance, so many different things, and then really robbed me of my sense of self for many, many months well into 2 years. And the beautiful thing that came from that was I really was able to fully come to the understanding that my health is my greatest asset, and it really is up to me to be my own best advocate. And it is also up to me on how I heal. And I learned how to get out of the passenger seat of my health care and get into the driver's seat.
Boots Knighton [:And I often have said out loud to my community, it's a good thing I hit my head because it got me ready for my heart journey. Now that is a pretty radical statement. I kind of laugh when I say it because when I zoom out and look at myself, I'm like, that is an absurd thing to say. But in my previous episode, episode 36, I was talking about how things when we reframe, how we look at what's happening in our lives as instead of to us changing that preposition to for us, it's amazing how that shifts the energy. And so, you need to know that, like, when I hit my head and the recovery was taking so long, I had a horrible depression that usually comes with really bad concussions. I had to really go through this very deep, cathartic soul excavation where it was like, the most intensive spring cleaning of my soul. It's like when you're spring cleaning your house and it's like the one time where you get into the back of your cabinets to get, like, that missing Tupperware container or yogurt container that you just haven't bothered to reach for because it's just slightly out of reach and it's such an inconvenience. And also, there might be, like, cobwebs back there and mouse turds. That's what I had to do with my soul. Like, my brain injury just commanded that of me.
Boots Knighton [:When it was time for the whole heart journey, not that I had it on my calendar, but when my heart made itself known that it needed attention, I had already done an incredible amount of work to build some really solid scaffolding to set the stage for a less wonky start to my diagnosis. So, I just wanted to set the stage there. Now it still felt like a dumpster fire to me when I was diagnosed because of all the medical gaslighting I experienced, which unfortunately is more typical for women than men. Definitely go back and listen to my story. It is, if you're just now finding me, it's worth going back and listening to because then you can hear about how I advocated for myself. And I don't want to go through all the steps of how I found out today. I'll relink my episode in the show notes if you haven't listened to my story yet.
Boots Knighton [:But today, I want to focus on how I approached my diagnosis and the outcome. So, I first reached out to friends, and I was raised in a household where we hold our secrets tight and don't let anyone know that were hurting, and I never found benefit from that. And my concussion made me get out of that mold and start asking for more support. And that was huge. So, I'd already kind of built that muscle, and I do think it takes, like, practice asking for support. For me, I had actually believed that I was worthy of support. I'm from the South. Like, everyone's stoic. We bless everyone's hearts and drink sweet tea and go to church on Sunday and pray it away. Like, that's my, like, really rudimentary summary of my upbringing. And it just doesn't do anything for me now. And so, I immediately reached out to all my dear friends, and I'm so thankful to say that I can count on multiple hands the people I can reach out to. I mean, obviously, I have an amazing husband. He was right there with me, but I just immediately just started looping people in. And you've heard me talk about my therapist before more than likely.
Boots Knighton [:And I, at the time, she and I had been working together for 6 years, thankfully. And just a quick step back, I found her because in 2014, I found myself at the very end of what I could handle. My best friend was murdered in a foreign country, and I had absolutely no coping skills to deal with a murder. And so, in order to even function and get out of bed, I had to start working with a professional. So, that's how she and I got started. And so, thankfully, we had already put in a good solid six years together, also an important foundation. Again, so just replaying, I asked for support for my community, for my husband, and then also my therapist. And that would really come in handy because I feel like with heart diagnoses, what I'm noticing from past people I have had the honor of interviewing for The Heart Chamber and also, ladies I have met with Women Heart, the national organization I'm a part of, and then also just speaking with my cardiologist, and I've visited now Stanford because of my heart, and University of Utah at Intermountain, down in Salt Lake and then also the Mayo Clinic, oh my gosh, the places my heart has taken me.
Boots Knighton [:I'm realizing that I have so much respect for anyone who wants to, like, study the heart and help the heart and operate on the heart. Like, cardiologists and surgeons have so much respect because the heart is complicated. And it takes a minute to, like, diagnose, figure out what the best plan of action is. A lot of times, there's, like, medication trials. Obviously, diet's a huge part. Exercise is a huge part. It's just not this quick fix like, say, a broken bone, which I can also speak to because I'm now 8 weeks out from breaking my leg, which I'm doing great, by the way. I'm actually weeks ahead of schedule for healing, which is a whole another episode.
Boots Knighton [:We just have to keep in mind that and I wish I had known this at the start. I don't think I could have known until I lived through it that it takes a while to get from point a to point b with a heart diagnosis. I mean, unless, unless you are having, God forbid, a heart attack that needs an immediate stent, like, that is a quick thing. Right? And, oh my gosh, I hope for all my listeners, may you never have that experience. That's, like, one of the few quick fixes I know of. So, I bring that up because it's a marathon of getting the help we need, and we need those around us to help us get there. And another thing that I think our society could do better at, so I was just speaking a few minutes ago about how I was raised. But we are animals just like the rest of the animal kingdom.
Boots Knighton [:We are interdependent. We are wired for connection. We are wired to love one another and be there for each other. And so, this whole notion of, I can get through this thing by myself, it's catastrophic for our health. One thing I wish we would also speak more of, if I could be president, this is what I would change. I wish we talked more about our nervous systems and how incredibly integral they are and then key they are to our well-being. And so, by letting our community support us through really hard things. What's really interesting is as they support us, it’s actually regulating our nervous system, which then actually helps our hearts. It's like this direct free way to help us stay functional and dare I say it, even alive. Well, that's proven, actually. Like, babies they've done research. Babies who aren't touched in the 1st few weeks or months of their life actually die. Right? So, as an adult, how am I anymore evolved than that. Like, we need touch. We need love. We need hugs. We need all of that. That was a big piece of the beginning of my diagnosis. Obviously, everyone was just as in shock as I was because I was 42 and had been an athlete for a really long time, so none of it made sense. It was also during COVID just to add, like, some extra spice. It's been 3 years, and I'm still like, wow. I did that.
Boots Knighton [:Going back to my therapist, oh, man. That woman deserves a Nobel Prize. We've now been at it for, it'll be 10 years in April. Wow. Yeah. She deserves a Nobel Prize. She and I did so much work at first around anger. Oh, man. I was pissed. What do you mean there's something wrong with my heart? Wait. 3 defects? Not just 1, but 3. 1 was inoperable. The other 2, operable. 1, not yet. The other, semi life threatening. Oh, but we have to wait because COVID and there's not An ICU bed, like, I said, go back and listen to the episode. There was so much radical acceptance I had to come to terms with.
Boots Knighton [:And when I say radical acceptance, all that really means is I fully understand and own the fact that my heart was born with 3 defects, and there's absolutely nothing I can change about it. And that I don't try to distract myself from it or reason it away or tried to blame someone else. Boy, I tried to blame my mom because, you know, she was the one who knit me together in her womb. Right? Like, it's crazy now thinking back to all the different, like, thought processes I had to go through, it was full on, like, all the stages of grief because it was a real loss. Because I went from being fine to not fine so fast, and the life I knew was completely over. And so, it was such heavy lifting emotionally and mentally to get through and work through all of that. And there was no way around it. You know, I haven't had a drink of alcohol in thirteen and a half years now. And so, there was no drinking through it. There was no eating through it. Like, I could not change it no matter what I wanted to do. And I certainly couldn't over exercise because my heart wasn't tolerating it. So, thank goodness for her and thank goodness for medication. The anxiety that I was feeling because I was so afraid I was going to die and the depression. And so, thank goodness for pharmacologic. And can we just take a moment to, like, celebrate that we have that tool to get us through really hard times.
Boots Knighton [:If you are facing a diagnosis and you are having a hard time getting through your day because you're terrified and sad and angry, it is completely okay to take a medication to help you get through the day because you still have to get through the day, and it just helps you stay functional. And the more functional you are, the better you can advocate for yourself, the better you can take care of yourself. Like, there is absolutely no shame and no harm in medication. There. I said it. But the other thing, and I've mentioned this in past episodes as well, that my therapist and I did together was EMDR. That's the magic. That's the miracle right there. It just had a way of helping me work through the trauma before the surgery even happened. We actually used it in helping me prepare for surgery. It was such an integral, dare I say it, the most important thing I did when I was diagnosed. And I think we had to do at least 12 sessions of EMDR in the months between the diagnosis and the surgery. Because, like I said, I mean, there's just so much you have to work through in every possible way you could imagine, when you have learned of your diagnosis until there's a surgical remedy or medication is just a lot to manage.
Boots Knighton [:2 other interesting things that I did. I've interviewed both these ladies. Acupuncture, and then the other one was Reiki. And Reiki is, I still don't quite understand it all, and that's why I interviewed my friend Kari and had her explain it. And in that episode, it was amazing. She actually walks us through things we can do on our own to help calm our nervous systems. But if you have access to Reiki, the best way I can describe it is it helped move all the energy that was not serving me out of my body. We really focused on preparing me for open heart surgery, and it was everything. It was so monumental. I went into that surgery so ready, and I do credit my friend Kari for a lot of that.
Boots Knighton [:And then acupuncture. Acupuncture is the most proven medical method out there. I mean, think about how old it is. I mean, heart surgery is so recent compared to acupuncture. And while it can't fix a defect or anything else that's going on in the heart necessarily, maybe AFib. I haven't looked into that. But what it can do is just help us cope. And behind me, what you can't see is the huge number of people who have gotten me to where I am today, where I can deliver this episode to you as calmly, as well as I can, thriving, well, minus a broken leg, but even that's healing ahead of schedule.
Boots Knighton [:It's because of my therapist, it's because of my acupuncturist, my friend Kari who does Reiki, obviously, my cardiologist, my surgeon, all the nurses, the technicians, my physical therapists and I think that's something I wasn't prepared for either when I went into this phase of my heart, or this chapter in my life. I just wasn't prepared for having to employ such a large army of healers. But I am, and I'm thankful I can. And it's one of the many reasons why I've brought you my podcast because I feel like I'm one of the lucky ones that I've had the opportunity to figure this out. And I just wish I had been given even more of a heads up when I was heading into this journey, I definitely overly relied on doctor Google at first, which definitely did nothing for my nervous system. I diagnosed myself with so many end-of-life things within a month of reading my heart CT. And, of course, I read all this life expectancy, and I was going to be dead in, like, 3 years. I mean, it did absolutely nothing for my emotion regulation, but I needed a podcast like this one. And that's why I started it.
Boots Knighton [:We don't have to do anything alone. I just can't say that enough. Maybe you're listening and you might feel like you have a smaller community than you would prefer. Well, let me and my listeners be your community. Maybe you're in a corner of the United States where there's just not a large population anyway. Well, you're not alone. The beautiful thing that came from COVID, if I dare say it, is this ability to connect more over the screen. It doesn't take the place of a hug, which is also so important like I was just saying a few minutes ago, but it does at least let us know we aren't alone. We're interdependent. And that's why I'm going to launch a Facebook community in March. I have a few other things up my sleeve, which I'll be announcing over the next month or so. I'm on a mission to pay it forward and to spread as much love as possible. Because I personally feel like my heart diagnosis and subsequent surgery and even the complications have been the greatest thing that's ever happened to me. So much so I started this podcast and want to give it away. And I recently spoke on the TEDx stage. It's now on YouTube. The title's called Practicing Dying for Living, and I focus on the 5 minutes before my heart surgery and how pivotal of a moment that was for me. But I feel like we, heart patients have won the lottery. And the reason why I say that, and I sense maybe a few of you are mad that I even said that, and believe me, I get it. I get it. I can say I feel like we've won the lottery because I've had 3 years of processing and working through it all. You couldn't pay me all the money on the planet, and I really mean this, to go back to who I was before heart surgery. There's just no way. No, thank you.
Boots Knighton [:Because the perspective I have now, who I am now as a soul has been worth all the fear, the anger, the grief, the pain. It's been worth it all. If you're willing to push your sleeves up and ask yourself, how is this happening for me? And then have the courage to actually radically listen to what your soul is telling you; you'll be blown away. So, on the 2nd installment of Heart month, I am sending you so much love from the Tetons where I live. Stay tuned to how you can join the Facebook community and be listening in for ways to get even more involved in the coming months. And I have a big favor to ask. Will you share this podcast with your cardiologists? Will you get this out to the world? It's amazing, like, the podcast landscape is a tough one, but I'm going to keep doing this every Tuesday, but I do need your help. So, consider becoming a member. Go to my support page on my website, become a member, throw in a tip. It'd be so helpful because it does cost money to put this on every week. And I love you. You can do this. I'll come back next Tuesday for more on my journey through heart surgery. Take care.
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.