#25 Join host Boots Knighton as she welcomes Leigh Kamping-Carder, the mind behind The Heart Dialogues, to delve into the realities of living with a complex heart defect. She shares her journey of childhood surgeries from tricuspid atresia to navigating the uncharted waters of adult care. Leigh sheds light on the emotional toll of her condition, while offering hope and support to others facing similar battles.

A Little More About Today's Guest

Leigh Kamping-Carder is the writer of The Heart Dialogues, a free newsletter featuring candid conversations and writing for people born with heart conditions (and the people who care about them). She was born with a complex heart defect called tricuspid atresia and had three heart surgeries before the age of 4, including a Fontan operation. She is also a professional journalist, currently heading up the newsletters team at one of the top newspapers in the U.S. She has been a reporter, editor and digital journalist for a decade and a half, covering everything from luxury homes to innovation to arts and culture.

How to connect with Leigh

Newsletter: theheartdialogues.substack.com

Twitter: @Leigh_KC

Join the Patreon Community! The Joyful Beat 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

Boots Knighton

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Open Heart Surgery with Boots

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Hello, and welcome to another episode of The Heart Chamber podcast. I am your host, Boots Knighton. Today on episode 25, I have such a rich conversation with Leigh Kamping-Carder, who is the writer of The Heart Dialogues, which is a free newsletter featuring candid conversations and writing for people born with heart conditions and the people who care about them. Leigh has a really interesting condition. She was born with a complex heart defect called Tricuspid atresia, and she had 3 heart surgeries before the age of 4, including a Fontan operation. She is also a professional journalist currently heading up the newsletters team at one of the top newspapers in the United States, and she's been a reporter, editor, and digital journalist for a decade and a half covering everything from luxury homes to innovation to arts and culture. Leigh is brilliant. She's a brilliant writer. You've got to check out her Substack called The Heart Dialogues, and the conversation we have has just got me thinking differently about how I talk about my own defects, and she really challenged me to just approach basically this whole condition in a different and probably healthier way. So, without further ado, I'm excited to bring you my conversation with Leigh Kamping-Carder. I hope you enjoy.

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 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.

Leigh, thanks again for saying yes. I found Leigh through Substack, as well as a nonprofit organization that had her listed as a resource. And be sure to, I’ll put Leigh's substack in the show notes because her writing is just balm for the soul. Her substack is called, The Heart Dialogues. And there are so many incredible resources there for people with congenital heart disease. So, welcome, Leigh. Thank you so much.

Thank you so much for having me.

And the narrative was changed from yes, my heart had been surgically repaired, but that didn't mean it was cured. And, something I just keep reflecting on this morning is congenital heart disease is a disease. It stays with us. Like, once we've had a surgery, our heart has been touched, it has been changed. And I know that what I've not been given the adequate, almost emotional and mental education around that. And I have had to figure that out after the fact, and I think, well, I hypothesize that it prolongs suffering and it makes me more at risk for bigger issues. And I'm thinking about this for all congenital heart patients.

And another line that also is really resonating is the knowledge that the Fontan was not a fix unsettled me, reordering how I saw myself and my health, but it also became background noise, a dripping faucet that might someday require a plumber. Oh my gosh. First of all, brilliant writing. And, yes, absolutely. We all walk around with this, like, little voice on our shoulder saying, you have this diagnosis. And one day, it is going to break. It could break just like an actual faucet in a house because after you use it so many times, it's going to get loose. It's going to wear out. And that is just a lot to manage.

Yeah. I mean, I think for me, you know, I think we had a lot of similar experiences and also a different experience because for me, I was diagnosed, you know, at 5 days old, I had all of my heart surgeries so far, knock on wood, before I was 4 years old. I'm 39 now, and, you know, what my family was told, what I was told very much are, you know, as I was growing up and even into my teenage years, the narrative really was that I had been repaired, you know, that I had been fixed and that I would need monitoring. There were potential things that could happen, but, you know, generally, the, you know, the issue with my heart, I'd had the surgeries and I was fixed. And then I think when I transitioned into from, you know, pediatric congenital care into adult congenital care, the narrative really changed where it was like, oh, this is a lifelong thing. And not just that maybe something could happen, we're going to monitor it, but, you know, it's very likely that something will happen. You know? And I think part of the reason for that is that there just weren't that many kids who'd have these kinds of surgeries and had lived until their forties, fifties, sixties. There wasn't enough data, you know, and it's kind of this incredible thing that most you know, the vast majority of kids with complex heart defects are living, and they're living into adulthood.

But the flip side of that is that we're finding that there's all kinds of other things that can go wrong and that in many cases, these surgical repairs are, you know, “temporary fixes”. And in some cases, temporary means 5 years. In some cases, it means 40 years. But at some point, down the road, something is going to happen. And then I think, you know, to kind of speak to your experience, because, you know, I know that you had this all as an adult and quite recently, you know, certainly compared to me being 4 years old, I haven't had a heart surgery as an adult. But from what I hear from talking to other people, I mean, it is just such a major thing for your body and your mind to go through. It is such a huge disruption to your life in so many different ways. And it's not something that you just kind of go into the hospital and have this thing and come out and it's done. So, yeah, it's hard.

Yeah. Well said, and it is hard. And it's different for everyone. You know? Every adult heart patient I've talked to, all of our experiences are so vastly different and complications are different. Actually, there's one person who breezed through his myocardial bridge surgery and is absolutely crushing life, and he's in his sixties. And I'm like, wow. Lucky you. You know? Like, he got to keep external wires. He's back on his bike and, like, large and in charge. But that is seems to be a rarity. I want us to go back in time, and your list of procedures is a mouthful. If you could just quickly walk us through all those and what they are for listeners because it's amazing what your tiny little body went through at such a young age.

Yeah. So, I had what is called a Fontan operation. The defect that I was born with, tricuspid atresia, means that the tricuspid valve, one of the valves in your heart, doesn't form. And it also meant that I have a single ventricle. So, instead of having 2 pumping chambers in my heart or ventricles, I only had 1. And so, this operation was kind of invented by this guy named Francis Fontan, and it's a three-stage operation. So, there's typically 3 surgeries that happen as part of it. So, it’s a little bit different for everyone kind of what age you are and exactly what procedures kind of lead up to it. But for me, I had a Blalock–Thomas–Taussig shunt when I was 9 months old, a Blalock-Hanlon shunt when I was about 2 years old, and then the Fontan, which is the final step when I was almost 4.

Wow. And you don't remember any of that?

Definitely not the first 2. I have, like, you know, couple flashes of memory, the one when I was almost 4.

Okay. Can you educate us on what those first 2, the Blalock–Thomas–Taussig and the Blalock-Hanlon did?

Yeah. They're sort of stop gap measures so that you can get kind of big enough and sturdy enough to undergo the actual Fontan.

Oh, okay. So, neither of those were open heart. Correct?

In my case, that's correct. Yeah. They were not open heart. I think in some cases, they are open heart for people. I think, I think it depends on lots of factors. I am not a heart surgeon, so I am not sure. But, yeah, for me, those 2 were closed heart and then the Fontan is open heart.

Wow. So, they must have just gone through, like, your femoral artery or arterial, like, through the wrist?

No. So, it's a heart surgery, but it's on the side of your body.

Oh, okay. Gotcha. So, they did have to cut. Gotcha. But then the Fontan was,

yeah. It's a full-on surgery. You know, you're in the ICU the whole, you know, generally instead, the whole deal. But you don't get the zipper scar kind of that goes down your chest. You have a scar on your side.

Right. So, yeah, you didn't have the, sternotomy. But then so now you have 2 scar you're rocking 2 scars because you've got the ones on the side and then the 1 on the front.

Yeah. And then when I was 8 years old, I had kind of a corrective plastic surgery related to the scar tissue from the earlier surgeries. That wasn't a heart surgery, but, again, that was another procedure where I was under general anesthetic in the ICU. Like, that kind of thing.

Mm-hmm. Mm-hmm. And you mentioned that you did remember that one.

Yes. That's the one that I have, the most memories of, and I talk about it a little bit in that essay.

Yeah. Why did you all decided to do that surgery at 8 years old? Was the scar bothering you?

Yeah. Basically, there were some problems with the scar tissue. And, you know, since I was still growing, they wanted to fix some problems that had happened when they sewed me up from the heart surgery so that I, you know, there would be no problems as I continue to grow and get bigger.

Okay. Gotcha. So, Leigh, I want to jump to present day and your Substack. And, I mean, that was one of the reasons why I reached out to you because I just so appreciated what you're doing through your writing, and you get me to think about my situation differently. And it takes a really talented writer to really help us examine life or see life or an event or a situation from a different perspective. And one essay that you wrote that really got me thinking was you basically were talking about, please don't call me a warrior. And I would love just to briefly touch on that. I would like to know, like, what was the impetus for you even wanting to write an essay addressing that?

So, there are these terms that are kind of thrown around in the CHD community, like heart warrior and survivor and heart hero. And I want to preface this by saying everyone is allowed to call themselves what they want. You know, you can talk about your body and your experience however you want. There's absolutely nothing wrong with that. For me, I would always cringe thinking about the term heart warrior or even heart hero. And I think, you know, whenever I have a strong reaction to something, it's like, oh, maybe there's something to write about here. You know? Or if there's a question that I want to have answered, maybe it's something to write about. And so, I kind of started thinking more about it.

And, you know, and I think part of the reason that I have that reaction from for me is I think there's a lot of nuances to all of these stories. I think they're very complicated stories. And I think calling someone, calling me a heart warrior just kind of papers over all of that. And it's really more about the other person calling me heart warrior than it is about who I actually am. You know, I think heart warrior kind of turns you into this I think in the essay, I said, like, into a mythical creature, you know, where you're battling, you're overcoming. And, you know, for me, it's not like that. Like, that's not really my experience. And I think it's also a lot of pressure, which I mentioned in the essay, you know, the pressure to feel like a hero or a warrior, to be strong, to be fighting. And there are days when I feel like that. And there are a lot of days when I don't feel like that. So, I think there's just like, for me, my story has a lot of ups and downs or nuances or complications or complexities, and heart warrior is just like, you are this thing, and you can't be anything else. You know, you have to be this thing for other people.

Wow. And, yes, I live in a community, you know, in the Tetons. It's a very athletic community. It's a proving ground for a lot of people, and I see a lot of people working out their demons basically in the mountains, on their bikes, on their skis, and I think that's why it really hit home for me because people just said, oh, you're so strong. You're just going to bounce back and be fine, and you'll be back in the mountains. And I listen to them. And I thought that, and I embraced that. And I'm realizing that it was a real actual disservice for my heart.

I just wonder, like, what other listeners' experience are. Sure. We all would love to get back to who we were or have a perfect tart, and be able to do whatever we want to do. And it's just, we don't have that. And I want to say thank you to you because you're actually giving me permission. It's interesting. I feel like I almost need more courage to feel my feelings around this and accept how I've been born, then the courage it takes to be out pushing myself in the mountains.

Wow. Yeah. I mean, yeah, the hardest part for me has been acceptance and not trying to push myself. And I think it's something I've really learned in the last few years, you know, really coming to terms with the idea that this is really something that I have.

Yes.

I was like, oh, sister, that sounds really painful. So, would you share with us, you know, as much as you feel comfortable, what triggered all that?

Yeah. Well, so, yeah, I woke up one day and, you know, my leg was really swollen and I kind of knew what it could potentially be because I was familiar with the symptoms of DVT or deep vein thrombosis, which is a blood clot in your leg, basically. And with my heart, I don't brush anything aside. I take everything really seriously. And so, I knew that I had to go to the ER. And so, I did. And they did an ultrasound, and they found not just a blood clot, but sort of extensive blood clots throughout my leg. And the hospital that I initially went to closer to my neighborhood, you know, was like, okay. We're going to operate on you. We're, you know, there's, like, procedure that we do and we, like, pull the clots out and blah, blah, blah. And I was like, no. You need to talk to my cardiologist. Nothing is happening until you talk to my cardiologist and, you know, of course, the nurse is like, oh, no. No. We're going to do the surgery. I'm like, no. You're not. All the like, the vascular surgeon and the nurse and everyone got my cardiologist on speakerphone, in this ultrasound room, and he kind of went over it and, you know, and he was basically like, no. We should not do that. It's too risky, like, with my Fontan anatomy, my heart anatomy. So, they took me in an ambulance to a hospital from Brooklyn to the upper east side, which if you don't know the geography of New York, is quite a distance. And because it was not only the sort of depths of the pandemic in New York, but also during these massive protests after George Floyd's murder, they had basically shut down the streets and there was a curfew on the city. And so, the ambulance could travel, but we flew up the FDR, which is this highway on the eastern side of the city, and I got to the hospital where my cardiologist works.

They basically admitted me, and I wound up having to stay for 3 nights, and there was kind of nothing they could really do because they didn't want to operate because of my anatomy. It was just too risky. And so, I basically was just, like, on really powerful blood thinners and then eventually was able to get discharged. And I think, you know, that was sort of the first time as an adult. It was the 1st time I'd stayed overnight in a hospital, and it was the 1st time when, you know, there have been, like, a few sort of smaller things growing up that were related to my heart, you know, things that came up that were problematic, and I had a bunch of tests, but nothing that really slowed me down, and I think this was the 1st moment where it was, like, kind of a serious issue related to my heart where I was like, oh, you know, there's like, stuff that can go on here, and I think it really yeah, it brought up a lot of stuff for me emotionally.

Of course, it would. And then you had to keep giving yourself shots in the stomach for a while.

Yeah. So, I had to do these blood thinner shots in my belly. I really hate needles, so it was just you know, it was twice a day with these big needles. It was awful. Like, I hated that so much. I think that was one of the worst parts.

Yeah. I've had to give myself shots, too. It's like next level. It's like you have to become like your own personal superhero, but you're not doing the shots anymore.

No. Luckily.

So, what is your, like, rhythm now with your cardiologist? Like, once a year, like, what does someone like you have to do for your heart on a yearly basis?

Well, I can tell you what I do. I think it's different. Even for someone with the same condition, they're going to have a totally different situation and outcome and recommendations. But, yeah, I see my cardiologist twice a year. In the last year, I've been having issues with arrhythmias and I had an ablation, so I've seen both my cardiologist and electrophysiologist a lot more than that, which is great. But yeah. You know, I mean, I've been going to a cardiologist. You know, for most of my life, it was once a year, and I do a bunch of tests. You know, I get echos every year. I get a whole bunch of things, but, you know, that's something that I've been doing my whole life. So, that's, you know, has never been out of the ordinary. That sort of standard.

Yeah. And that's something I'm still working on getting into rhythm about. Like, I just chose not to go get an echo this past summer even though my cardiologist had it on the schedule. It's hard to just keep showing up for me, but I'm also, I'm still so new at this compared to your journey. And so, listeners can probably either relate to you or me. It's like, oh, if you were born and had the knowledge at the start of, I call it my heart dumpster fire, but that's just my sick, twisted humor.

I like that.

Yes. They were rolling me back in the ER yesterday. I was like, my heart's just a dumpster fire, and it made the nurse feel so uncomfortable. I could tell. She was like, you're not a dumpster fire. You don't look like a dumpster fire. And she immediately, like, pooh poohed my verbiage. I was like, no. No. No. This is a dumpster fire. I'm allowed to call this a dumpster fire.

I think it's so interesting because, you know, I've thought of my heart in different ways as I've grown up. And I think that sort of ties into the idea of heart warrior or heart hero as well, where, like, you're allowed to be angry at your heart. You're allowed to be disappointed. You're allowed to have these moments where you're, you know, you're not a bright, shiny person for people, for other people. And also, you're allowed to think what I really try and do today is think of my heart as this really special thing. You know, I had an echo once a few years ago where the echo tech, she was great. And she, she was so fascinated by my heart and like, not in a creepy, weird way, but just like, wow. Like, this is, this is amazing.

Like, the way they repair this, like, your heart is so incredible. You know? Like, what a special thing. Like, look at what your heart has done. You know? And my heart has been there for me and gotten me through almost 40 years despite it being a dumpster fire. You know? So, yeah, anyway, I think the point is that you get to call it whatever you want. You can be angry. You can also appreciate it. And, you know, that's going to change from day to day. So, yeah. That was a tangent.

Oh, I love tangents. Thank you for that. What is on the horizon for you, Leigh, as an almost 40-year-old who seems to have defied some odds, and you're thriving. You work for a major newspaper. It's just incredible what you're doing with your life. So, what do you have planned for you and your special heart?

Well, I definitely am continuing to work on the newsletter. You know, I have some great reported pieces that I want to do, some interviews that I'm planning, and sort of finished the thought with the blood clots. You know, I think, you know, for probably a year after that all happened, I was really feeling like this thing, which I mentioned in the essay was really charged. And, like, I couldn't talk about it. Guy was a burden. And the way that it came up in my memory was just so intense. You know? It wasn't like going to the doctor to, I don't know, fix a sprained ankle or, you know, any kind of other issue and think a lot of, what happened to me as a kid sort of came back up, and I had to really, like, worked through a lot of that. And it was really hard, I think, in the last, you know, year or 2, and especially, you know, writing that essay, starting the newsletter, I think I am kind of accepting my heart a lot more.

I definitely still have days when I'm angry or frustrated or sad or bewildered or hopeless, but I also feel much stronger and sure about everything. I think part of that has been really that acceptance piece. You know? Like, okay. This isn't going away. This is going to be hard. You know? There are going to be things that I can't really do anymore. You know? And I think accepting that takes a long time. It's hard, but it's also has allowed me to be just feel a lot more at peace.

And then I think the other piece of it really community, you know, and I know that, Boots, you've talked about this, but I think writing that essay, being really public about my health and what I've gone through, was extremely scary, but also, it's now out there, and I got a really positive response. And then starting the newsletter, you know, I'm interviewing other people like me who have these weird hearts and difficult experiences, but also really strong experiences, you know, shown a lot of strength. And so, with the newsletter, I also get, you know, comments from people, emails from people who are like me, have lived their whole lives without ever meeting anyone else like them. And I think when you find other people like you who've gone through the same thing, it just feels like you're so much more normal. It feels so much more manageable. You know, listening to podcasts like this, being part of a community has also really helped me. I mean, it sounds cheesy, but it really has helped me, like, accept this and kind of resolve it in my mind. So, this is a very long way of answering your question of sort of what's next, I think it's, like, to continue building this community, exploring, you know, writing the resources that I wish I'd had, going into, you know, the really thorny, hard topics and writing about my own experiences and, you know, just to continue to do it and just make it bigger and bigger and bigger.

I love that. Thank you. Your substack is what I needed when I was facing open heart surgery. And that's why I started this podcast because there's nothing else like it. And so, I see that I'm building a spoken resource for heart patients. So, you're building the written resource, and I'm the spoken one.

Yeah. There are very few resources. You know? There are 2 and a half million people in America with congenital heart conditions, and there's just so little, you know, in the way of pop culture, podcasts, writings, books, newsletters, whatever it is, there needs to be more.

Well, Leigh, I can't thank you enough for coming on. I feel like I've made a new friend. Any final thoughts, advice you would give someone facing open heart surgery?

In a weird way, I'm maybe, like, not very well placed to tell anyone because I haven't had a heart surgery as an adult, but I think I have had a lot of interactions with hospitals and doctors and medical stuff. I think you need to have a lot of trust in yourself that you're allowed to feel what you're feeling. You're allowed to advocate for yourself. You're allowed to ask for what you need, not only of medical personnel, but of your family and friends and loved ones, you know, it's a very difficult thing to endure, but you need to trust yourself and listen to yourself.

You heard it from Leigh, everyone. Be sure to go follow her on Substack, and I will put all the other ways you can get in touch with her in the show notes.

Yeah. And if you want to check out the newsletter, it's at theheartdialogues.substack.com. And you can also follow me on X @Leigh_KC. That's LEIGH_KC.

Excellent. And I will have everything in the show notes for you listeners. And Leigh's just getting started, everyone. She's got a bright life ahead of her, and I'm just honored that you said yes.

Thank you so much for having me.

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 BootsatTheHeartChamberPodcast.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.