Heart to Heart with Anna

Cardiac Chronicles and Community Connections: Leigh Kamping-Carder's Story

June 06, 2023 Leigh Kamping-Carder Season 18 Episode 424
Cardiac Chronicles and Community Connections: Leigh Kamping-Carder's Story
Heart to Heart with Anna
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Heart to Heart with Anna
Cardiac Chronicles and Community Connections: Leigh Kamping-Carder's Story
Jun 06, 2023 Season 18 Episode 424
Leigh Kamping-Carder

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What if you could find a space to share your story, ask questions, and connect with others living with congenital heart conditions? Join me as I chat with Leigh Kamping-Carder, founder and writer of "The Heart Dialogues," a free newsletter that does just that. We discuss Leigh's own experience of living with tricuspid atresia, a single-ventricle defect, and her journey navigating two different approaches to cardiology - one in Canada and one in the US.

In our conversation, we explore the medical trauma that comes with surviving open-heart procedures and the importance of addressing and normalizing this often unspoken aspect of living with a heart condition. Leigh shares her unique perspective on the differences in care she experienced as an adult with a cardiac condition in Canada and the United States, and the potential benefits of a more laid-back approach to care. Discover the choices patients can make when considering their health care and the impact of different philosophies of care.

Lastly, we talk about the importance of writing and reading for those with congenital heart conditions and how Leigh's journalism background has played a vital role in creating "The Heart Dialogues." Listen in for Leigh's advice on carving out time to write and her understanding that her life and health are finite, fueling her mission to help others. Don't miss this heartfelt conversation with Leigh Kamping-Carder, and be sure to check out "The Heart Dialogues" for more candid conversations and support within the congenital heart community.

To read Leigh's newsletter or to contact her:

The Heart Dialogues newsletter: theheartdialogues.substack.com

Leigh's Twitter handle: @Leigh_KC twitter.com/Leigh_KC

To reach Anna, visit: https://heartsunitetheglobe.org or email her at Anna@hearttoheartwithAnna.com

We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!

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Send us a Text Message.

What if you could find a space to share your story, ask questions, and connect with others living with congenital heart conditions? Join me as I chat with Leigh Kamping-Carder, founder and writer of "The Heart Dialogues," a free newsletter that does just that. We discuss Leigh's own experience of living with tricuspid atresia, a single-ventricle defect, and her journey navigating two different approaches to cardiology - one in Canada and one in the US.

In our conversation, we explore the medical trauma that comes with surviving open-heart procedures and the importance of addressing and normalizing this often unspoken aspect of living with a heart condition. Leigh shares her unique perspective on the differences in care she experienced as an adult with a cardiac condition in Canada and the United States, and the potential benefits of a more laid-back approach to care. Discover the choices patients can make when considering their health care and the impact of different philosophies of care.

Lastly, we talk about the importance of writing and reading for those with congenital heart conditions and how Leigh's journalism background has played a vital role in creating "The Heart Dialogues." Listen in for Leigh's advice on carving out time to write and her understanding that her life and health are finite, fueling her mission to help others. Don't miss this heartfelt conversation with Leigh Kamping-Carder, and be sure to check out "The Heart Dialogues" for more candid conversations and support within the congenital heart community.

To read Leigh's newsletter or to contact her:

The Heart Dialogues newsletter: theheartdialogues.substack.com

Leigh's Twitter handle: @Leigh_KC twitter.com/Leigh_KC

To reach Anna, visit: https://heartsunitetheglobe.org or email her at Anna@hearttoheartwithAnna.com

We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!

& so much more
A bi-monthly podcast where we share the stories of our Caregivers, patients and...

Listen on: Apple Podcasts   Spotify

Support the Show.

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

Social Media Pages:

Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website

Leigh Kamping-Carder:

I think one thing that's been interesting, that sort of emerged from this, is there are so many little things where people talk to me and I go oh my gosh, that exact thing happened to me, or I know exactly what you're talking about.

Anna Jaworski:

Who is Lee Camping Carter? What are the heart dialogues? Where can someone access the heart dialogues? Welcome to Heart to Heart with Anna. I am Anna Jawarski and your host, also a heart mom to an adult who was born with a single ventricle heart and is 28 years old. That's the reason I am the host of your podcast. Today's episode is called Lee Camping Carter and the Heart Dialogues, and our guest is Lee Camping Carter.

Anna Jaworski:

Lee Camping Carter is the founder and writer of the Heart Dialogues, a free newsletter featuring candid conversations and information for people living with congenital heart conditions. The link to the newsletter will be in the show notes, which is the description of the show. While a few groups are doing critical work to raise awareness about congenital heart conditions and conduct medical research and increase access to care, not many places exist for people with congenital heart conditions to share their experiences and questions. at feeling less weird, Lee started the Heart Dialogues to be one of those places, a space where we can explore all the different ways that congenital heart conditions affects our lives for better and for worse. As a professional journalist working at one of the country's top newspapers, she is drawing on her nearly 15 years of experience as a reporter, editor and the head of newsletters to bring CHD related stories and information to life.

Anna Jaworski:

Lee is 38 years old and was born and raised in Toronto, Canada. For more than 30 years she received cardiology care in a healthcare system very different from the one in the United States. She moved to Brooklyn about 15 years ago and about six years ago transferred her care to New York. She's experienced two different approaches to cardiology but, unlike so many CHD kids, she has never fallen out of care, which I find remarkable. Welcome to Heart to Heart with Anna Lee Camping Carter.

Leigh Kamping-Carder:

Yeah, thanks so much for having me. I'm excited to be here.

Anna Jaworski:

I'm excited to talk to you, lee. Not all of my guests know about your heart condition, so can you tell us a little bit more about your cardiac condition and whether or not you've had surgery for it?

Leigh Kamping-Carder:

Yeah, so I was born with a complex heart defect called tricuspid atresia, which is a single ventricle defect where basically the tricuspid valve doesn't form a single ventricle correctly And that's the valve on the right side of the heart which we're not upper and lower chambers. So I was diagnosed shortly after birth and I had a shunt when I was about nine months old, another shunt when I was two years old And then I had the fontan when I was almost four in 1988. And then I had a corrective plastic surgery for one of my scars when I was eight years old. And since then there's been a couple of small things here and there, but no other operation, so no other open heart procedures.

Leigh Kamping-Carder:

Yeah, just the one open heart, just the fontan.

Anna Jaworski:

Oh, my goodness, but that was so much. Oh, so your shunts were not done open heart Correct, yeah, oh wow. I'm just curious because I've seen people before who have a scar under their back of their shoulder blade, where sometimes they've had surgeries done that way, and of course there's a midline scar that some people have. How did they do the shunt? Was that actually in a cath lab?

Leigh Kamping-Carder:

No, it was a surgery on my right side. So yes, I have one of those scars on my back and side.

Anna Jaworski:

Okay, wow, i'm so impressed that you've gone through all of this medical trauma because, let's face it, when you put your body through all of those different procedures, it's medical trauma. And yet here you are trying to normalize things for other people who have been through the same trauma that you have. So kudos to you. I have really enjoyed looking at the newsletters that you put out already. I read from top to bottom the one with Tracy, who was on my show before. I really enjoyed that And I learned new things, even though she's been on my show twice, so that was really cool. I found it interesting that you've received care both in Toronto and in the United States, so tell me some of the differences that you noticed in care as an adult with a cardiac condition, first in Canada and then in the US.

Leigh Kamping-Carder:

I was lucky enough to grow up in Toronto, which is a big city and has lots of really great medical care and in fact has one of the world's best centers for pediatric cardiology. So I think there's a couple of big differences. I had my care in Toronto until I guess what six years ago, when I transferred it to New York, which is also a big city but also really good medical care. So the care was top-match in both places. And this is, of course, only my own personal experience. But one big thing of course that's different is that we have a universal health care. In Canada. We never paid a bill. There was no in-network or out-of-network, there was no paperwork or bureaucracy. It was really just you go to the hospital and you get care, and obviously that was an adjustment.

Leigh Kamping-Carder:

Coming to New York and realizing like, oh, this is like a part-time job. I think, beyond that, what I have experienced and this is certainly not necessarily the case for everyone, but I think there's a bit of a different philosophy So for my care in Toronto, i think the approach was always let's not do anything if we don't have to. So if you don't have to take this medication, we won't give this to you If we don't have to do this procedure yet, let's not quite do it, let's hold on. And then when I came to New York, the philosophy was the opposite, where if we have a medication, let's give it to you. If we have this procedure, let's do it as soon as possible, and I think there's probably pros and cons to both approaches, but I think that was an adjustment.

Anna Jaworski:

Much more medicalized here, being in New York. Yeah, i'm sure there was a huge adjustment for you. So did they ask you, or tell you, that they wanted to put you on new medicine that you hadn't been on before?

Leigh Kamping-Carder:

I have one of going on several medications, partly because of health issues that have cropped up in the last six years unrelated to being in New York. But yeah, but I would say, like my cardiologist definitely has an attitude where if there's some solid research that shows, hey, this might help, it's definitely let's get you on this, let's try this. Or if there's a procedure that, hey, we could put it off for a year or we could do it now, the attitude is much more let's do it now.

Anna Jaworski:

Yeah, i find that fascinating that there are those different philosophies and I wonder if there have been any studies, because it seems like there are always studies on everything, but I've never looked for this. I wonder if there are any studies that compare how adults in the CHC community do when they have a more laissez-faire attitude versus a more aggressive attitude. And the problem is, every human is so different that it's really hard to compare. I don't even know if you really could do a good comparison, unless you just see certain across the board. Oh, this one population. They tend to have more congestive heart failure or something like that. I don't know. I don't even know exactly what you would look for.

Leigh Kamping-Carder:

Yeah, I think it's also hard to say exactly what better would mean. Like I really appreciated when I was in my teens or 20s that my cardiologist. he was always talking should she go on blood thinner? should she go on blood thinners? And for me I never wanted to, because I never wanted to feel like a patient. I didn't want to feel sick, i didn't want to have to take medication.

Anna Jaworski:

That is how my heart warrior was Exactly. My kid fell out of care And I wonder if maybe there had been more laissez faire attitude, maybe she wouldn't have fallen out of care. But she got sick and tired of all the medicine that she had to take and all the tests and being seen by cardiology every six months, even when she felt well, so she just quit going when she didn't have mom dragging her out there. I wonder if maybe she had been only seen once a year instead of twice a year And they hadn't been running quite as many tests and they didn't demand her to take quite as many medications, if maybe she would have been more compliant? I don't know, she's still my kid, so there's no teller.

Leigh Kamping-Carder:

I think it's hard to say And I don't know if I would use the word laissez faire. I think it was really top quality care. I did have a lot of tests.

Anna Jaworski:

Oh, i don't mean any disrespect, i don't mean any disrespect, Yeah.

Anna Jaworski:

I just mean more laid back. I assume laissez faire was more laid back, not as opposed to a more aggressive approach, which I feel like many of the hospitals here in the US are much more aggressive, and that has a really negative connotation. I don't mean that in a negative way either. I just mean that they're more apt to try new things. But once you're an adult, you could do what my kid did And you can say no, like my child's cardiologist decided that she needed a pacemaker, and my daughter did not believe she needed a pacemaker.

Anna Jaworski:

She did her own research and found out that one of the new drugs that they put her on, one of the side effects, could be arrhythmias, and so she met with an electrophysiologist and said I don't think I need a pacemaker until we determine whether or not this new drug I'm on is what's actually causing the problem. And thankfully the electrophysiologist agreed with her and come to find out. Yes, indeed, it was that drug. It was causing the arrhythmias, and now she doesn't have those arrhythmias And she doesn't have a pacemaker.

Anna Jaworski:

So I think it's really important to be able to be assertive for yourself and to do your own research, and that's one of the things I like about the heart dialogues is that you're talking to people about their own specific conditions and their own specific journey, and you were really detailed.

Anna Jaworski:

With the one newsletter that I read, you really went into a lot of detail with Tracy And asked her a lot of questions And because she felt really safe with you, lee, she really opened up to you and shared a lot of information. I think one of the problems for her heart warriors is it's hard to find anyone else just like you. It's hard to find anyone else who's gone through exactly what you've gone through, and even with these dialogues, tracy didn't go through exactly the same thing you did, but just by having that conversation it gives you a chance to hear somebody else's story And then, if you start to experience something that you've read somebody else has experienced, maybe you know some of the possible consequences or at least some of the jargon and terminology to use when you talk to your doctor.

Leigh Kamping-Carder:

Yeah, i've been really lucky that when it's been really open and candid with me, and I feel very lucky to the people that I've interviewed for being that way. I think one thing that's been interesting, that sort of emerged from this, is there are so many little things where people talk to me and I go, oh my gosh, that exact thing happened to me Or I know exactly what you're talking about And I've never had anyone in my life where that's been true. I think it's also interesting that there's as much where, oh, that experience is very different from mine. People who've had more interventions or fewer interventions. We call this congenital heart disease or congenital heart conditions, but that encompasses such a wide array of defects and experiences and severity and all that kind of stuff. Yeah, it's been equally rewarding to hear the stuff that feels really familiar and the stuff that feels really different. ["song of the Heart"].

Anna Jaworski:

And Tonight Forever by the Baby Blue Sound Collective. I think what I love so much about this CD is that some of the songs were inspired by the patients.

BHP promo:

Many listeners will understand many of the different songs and what they've been inspired by. Our new album will be available on iTunes, Amazoncom, Spotify.

Anna Jaworski:

I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects.

BHP promo:

Enjoy the music.

Anna Jaworski:

Home Tonight Forever. ["song of the Heart"]. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. The opinions expressed in the podcast are not those of Heart's Unite the Globe, but of the hosts and guests, and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

HUG information:

["song of the Heart"]. You are listening to Heart to Heart with Anna. If you have a question or comment that you would like to address on our show, please send an email to Anna Jaworski at Anna at hearttoheartwithannacom. That's Anna at hearttoheartwithannacom. Now back to Heart to Heart with Anna.

Anna Jaworski:

Lee, before the break we were talking about your cardiac condition and it sounds like you've been very careful with your care because you've never fallen out of care, But I'm sure that doesn't mean you haven't struggled, because you just told me that you've had four procedures. That's a lot of procedures to have to undergo, plus additional procedures that were not cardiac. Tell me why you started the heart dialogues.

Leigh Kamping-Carder:

I think there's a couple different things. So I really started getting more involved with the congenital heart community probably two or three years ago, and I think there's some really fantastic groups out there that are raising awareness, that are doing medical research, that are doing advocacy work in DC. Every time I would be in a webinar or a conference or a fundraising event, people would talk about what we really want as community. I found also that a lot of the time the conversations that people would have would just really be focused a lot on the medical staff. So when people introduced themselves, it was hi, i'm Lee and I have tricuspid atresia. These are the surgeries I had And that's how we would relate to each other. And I felt, of course, all of that is very important, all stuff we need to talk about, but also there are so many other things that are involved with having congenital heart condition and even just having an illness since birth.

Leigh Kamping-Carder:

There's things like having scars, how to talk to your boss about having a bunch of doctor's appointments, how your parents deal with your care. For some people they're very involved, for some people they're not. So it just seemed like there was a lot of other stuff out there that we could be talking about. And then I think for me I'm a journalist, i've been a journalist for many years and I've worked in newsletters in my job for many years And I really gravitated toward that medium. I subscribed to a lot of newsletters I love newsletters And it felt like there wasn't really something out there that was a newsletter where you didn't necessarily have to be part of a conversation or log into Facebook, but there was something that could come to your inbox a couple of times a month that you could read at your leisure digest and think about. So I felt like there was an opening there for me to bring my skills for my work, life and my passion for this community or this subject and kind of put them together for the heart dialogues.

Anna Jaworski:

I love it. I love it And I think you're absolutely right. And to be totally honest with you, Lee, even if there were another newsletter out there, there's room for two.

Leigh Kamping-Carder:

There's room for three or four or five.

Anna Jaworski:

Exactly because, Exactly there are so many stories that need to be told and you can't tell everything in one newsletter. We have multiple podcasts now, which is so exciting to me that there are multiple opportunities for people to go on the air and do this audibly. Not everybody likes to listen to things. Some people are more visual learners or they prefer to look on their phone and read while they're on the train or something like that, and so that's where the newsletter comes in really handy. So, as I mentioned earlier, i really enjoyed your issue with Tracy Levecke because she had been on my show before and I just find her fascinating. I was so impressed with how in depth your interview with her was, because I think that would have taken longer than the 30 minutes to an hour I usually spend with people putting together my podcast. So can you take us through the process that you go through to create your newsletter?

Leigh Kamping-Carder:

Yeah, so these interviews, at least so far, have all been phone conversations. We've talked for a range from 40 minutes to 60 plus minutes and I usually go in. I try and do as much research on the person as I can. I do the cyber-stalking of things not in a creepy way Nice to talk about, they're creepy way. I want to go in as prepared as I can be. I usually have the general list of questions that I would like to get into, some of which are unique to the person, some of which are things that I ask everyone. But we also let the conversations just go where they will and I think every time I've been surprised by where they go, and I also try and make sure I ask some very personal questions.

Anna Jaworski:

You did even about her childhood And I thought that was really telling. I really enjoyed reading that because that's not something that normally gets discussed. You did a really good job with that.

Leigh Kamping-Carder:

That makes me very happy to hear, but I also practice every interview by telling people that I do have personal questions, but you don't have to answer them And if it's uncomfortable you don't have to go there. I do want people to feel really safe and protected. I'm not out to make them look silly or anything like that. I think it's really just about having an honest conversation and talking about all the good things and all the bad things and getting as deep as you can possibly go.

Anna Jaworski:

Yeah, i think you do an excellent job. I can definitely see that you've had training in that area, but I also think, just from what I've read and the limited conversations I've had with you already, you're a very empathetic person And you come across as somebody who's very trustworthy and that you care about how other people feel.

Leigh Kamping-Carder:

Good. I think that's good for a reporter. I'm really about to think about one Also. It's true, I do really care. I do care about what I'm talking to.

Anna Jaworski:

So you feel like a very authentic person and that you're in touch with the deeper part of yourself. I need to say this, but I feel like a lot of people are superficial and they're not really looking deep within, they're not introspective. You strike me as a kind of person who's much more introspective and you're interested in other people's experiences And you don't mind listening and taking in what their contrasting experiences have been. So I just really find it fascinating And I think you're the right person for the job. I think you came up with the right medium for you and you do an excellent job. Thank you so much. You're very welcome, my dear.

Leigh Kamping-Carder:

No one can see vids, but I'm blushing.

Anna Jaworski:

I can see and you're just adorable. So tell me how you decide who you're going to feature in your newslet because, as I said, there are a lot of people out there and I find it challenging with me, even with the podcast Who am I going to select? A lot of times, i'm in a lot of different groups on Facebook and people will start talking about something and I'll think, oh my gosh, i haven't covered that on my podcast yet and I'll reach out to one of those people to see if they would like to come on this show and talk about it. How do you choose who you're going to feature?

Leigh Kamping-Carder:

I had a few interviews already in the bag before I launched and I reached out to people who I knew or knew of who I thought would be open to sharing their stories. That was initially the criteria, because I wanted to find people who are comfortable talking about this. Since I've launched, i've actually been approached by a lot of people who've come to me, so I thought this would be the most difficult part of the newsletter. It's finding people to talk to and, in fact, within the easiest part, people are coming to me. The way I would like for it to take shape is, i think, a lot about having a big diversity of voiceless, gender or racial, geographic, of course, but also different heart conditions, different ages and also different levels of intervention. Some people have had really many serious medical interventions and some people really haven't. It was something that happened when they were a kid, and it's fine now Isn't that lovely.

Anna Jaworski:

There are some people who have only had one surgery and that's all they needed. I love it when I have people who come on my program and they talk candidly, like you have, about yeah, i had multiple procedures, some were closed heart, some were open heart, and you're perfectly fine with saying that, and I can empathize because my heart warrior has had three surgeries herself. But then it is lovely sometimes to get somebody who says, oh, yeah, i'm considered a one and done. I think, wow, thank goodness there are some people out there like that and not everybody has to have so many procedures because it's hard psychologically, emotionally, physically. It's so hard to go through all of that.

Anna Jaworski:

I'm glad to hear you're looking for diversity, different types of heart effects, different experiences. I think that's really wonderful. And different ages That's nice too, because, as we know, this happens to people of all ages and so many of you are living to be adults and even older adults, which to me is really exciting. I love having somebody on my show who's in their 50s or in their 60s. That gives me so much hope for my heart warrior.

Leigh Kamping-Carder:

And I think the medical care is just so different. Even a difference of 10 years. I talked to someone who is 10 years younger than me and their experiences are different from mine. Oh, really.

Anna Jaworski:

And now all these people who are living in the age of COVID and that was their first experience with dealing with the heart world that's got to be so much harder. At least, when my heart warrior, and when you were having to undergo your first surgeries, both your mommy and your daddy could be there with you, and during the highest part of COVID that wasn't necessarily said they were only allowed to have one person be back there with them. I think that's got to be a lot harder, don't you? Yeah, yeah, did you have both your parents with you when you had your surgery?

Anna Jaworski:

I think it was mostly my mom, yeah, Yes that task usually does fall mostly to the moms, but I know that my husband was there as much as he could be. Now it was his insurance that we use here in the States. that's really important. So he had a certain amount of time that he could take away from work. but he was afraid to take too much because we couldn't afford to lose our insurance And unfortunately we were at a hospital three hours away from where we lived So he couldn't just come after work and then make it back to work the next day.

BHP promo:

Anna Jaworski has written several books to empower the congenital heart defect, or CHD, community. These books can be found at amazoncom or at her website, wwwbabyheartspresscom. Her best seller is The Heart of a Mother, an anthology of stories written by women for women in the CHD community, and as other books, my Brother Needs an Operation, the Heart of a Father and Hypoplastic Left Heart Syndrome. A handbook for parents will help you understand that you are not alone. Visit babyheartspresscom to find out more.

HUG information:

Heart to Heart with Anna is a presentation of Hearts Unite the Globe and is part of the Hugg Podcast Network. Hearts Unite the Globe is a non-profit organization devoted to providing resources to the congenital heart defect community to uplift, empower and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at wwwcongenitalheartdefectscom for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors and much, much more.

Anna Jaworski:

So before the break we were learning about the heart dialogues with Lee And in this segment I'm going to talk to Lee about her plans for the future. So, of course, with your great writing background and the excellent job you've done with your newsletter already, i'm wondering do you think the heart dialogues might turn into a book?

Leigh Kamping-Carder:

I'm certainly open to that. I'm not quite looking that far ahead right this moment, but I am thinking of the future of the newsletter. I think there's a whole bunch of essay ideas that I have that I'd like to roll out. I'm publishing every other week currently, but I would love to run once a week. So that's the next big step.

Anna Jaworski:

It is a big step Yeah.

Leigh Kamping-Carder:

I think there's other different kinds of posts that I'd like to do. I'd like to eventually include some links, roundups and recommendations, and I just made a bonus just this week with comments from readers, so I'd like to do more of that.

HUG information:

Yeah.

Leigh Kamping-Carder:

The next step is trying some of these different formats, getting to one for the week and we'll see how it goes from there.

Anna Jaworski:

Do you think you might end up getting a co-editor or somebody to help you, because this is a lot of work and you have a full-time job?

Leigh Kamping-Carder:

Yeah, I know That's something I thought about. I guess I'd have to see how it goes.

Anna Jaworski:

Yeah, before we go. I know a lot of people who are listening love to write as well. I'm wondering if you have any advice for aspiring writers who were born with a congenital heart condition?

Leigh Kamping-Carder:

Yeah, I give the same advice for anyone who wants to write and I'm certainly not an expert. I've been doing journalism for a long time. I've been writing since I was a kid. I think there's lots of great resources out there. But yeah, I would say this sounds silly, but I think the first thing to do is actually write.

Anna Jaworski:

It doesn't sound silly when you're a writer, because writers are the worst people procrastinating about writing.

Leigh Kamping-Carder:

Yeah, i think it's really hard for you have a job, if you have kids, if you have all the to-do lists. That goes on and on. I think it's really easy to push writing off. I think it's also easy to get intimidated and think that I have to write something that's beautiful, i have to write something that gets published, i have to write something that is a certain length, or I have to spend four hours at a time doing it. I would say none of that is true. I would just carve out 20 minutes, if you can, and just sit write. Don't put any restrictions on yourself, don't put any pressure on yourself, just write. Writing is a big part of writing. And also, i would say, read a lot, find what you like to read. When you encounter something that you read that really moves you or that you really connect with, i'd say, try and figure out why it does that, try and pick it apart. Yeah, reading, i think, is a big part of writing.

Anna Jaworski:

I think so too. As a writer myself, i find that the first time I read a book I'm just absorbing it. But then, like you said, if I find that it really moves me or I really am touched and I really like it and I find my mind going back to things that I had read in that book, i'll read it the second time to do what you said, to be more analytical. It's hard for me to analyze the very first time through because I'm so into it and I just gobble it up.

Anna Jaworski:

I think that's excellent advice and you're right, and that advice would be perfect for somebody, whether they have a cardiac condition or not. It's for anybody who wants to be a writer. I think it's brave of you to move to the United States after living in Canada as a child. Moving to a different country, especially one where the healthcare situation is so radically different from the one that you grew up with, it's got to be a little bit scary. So what advice would you give to other adults who are born with cardiac conditions, who want to experience living in a different country?

Leigh Kamping-Carder:

Yeah, i think, ironically, actually moving to New York was much less scary than a couple of the moves I'd had before that. So when I moved to New York, first of all it's very close to Toronto, so a very quick flight. My mom lived in Massachusetts at the time so I was actually moving closer to her And I had gone to university in Vancouver, canada, which is way on the West Coast, which is a five hour flight across multiple time zones. So New York was actually closer and easier to be in touch with my family. And then, immediately before I moved to New York, i did a four month packing trip solo through India And through India.

Anna Jaworski:

Yeah, whoa, i was not expecting you to say India. Okay, what drove you to go to India Backpacking across India?

Leigh Kamping-Carder:

Wow Yeah. So I think my mom was like okay, i can deal with New York, but there's like a couple of things that I want to talk about with my cardiac care and some of these travels. I think before I went I talked to my cardiologist, i cleared it with him. I had his contact information. He knew I was going, so that was a big part of it.

Anna Jaworski:

Good, all of that's really smart, yeah.

Leigh Kamping-Carder:

And then I think the other thing was that I've always had this feeling that at some point it might get to a situation where I can't do things like that. I don't know where my whole is going to go, and the reality is that everyone has that I was just going to say my husband and I are entering our 60s all the

Leigh Kamping-Carder:

60 this year And we've been saying, okay, where do we really want to go, that we know we have to be in good enough health to do it, that we need to do it now, before we get into our 70s It will be a lot harder, yeah, and I think that people who were born with these complex conditions, both for good and for ill, have a real sense that our lives are finite and our health is finite, yeah, and so for me it was more important even if something did happen that I got the opportunity to back panic through India, and I got the opportunity to go to grad school and study journalism in New York City. These things have changed my life, and I know that there was some risk involved, but for me it was worth the risk.

Anna Jaworski:

I'm so impressed that you look at it that way, and I think that's the perfect way anybody should look at their lives. And honestly, lee, i think when I was granted hope as my child, that God gave me hope and a mission, and that mission was to help other families like mine. And I think I also got a tremendous gift, and that gift was the knowledge that tomorrow isn't guaranteed and that I needed to appreciate every day And I already did because I was one of those people who had a really hard time getting pregnant. So it took me five years before I had my first child, and three of those years were fraught with a lot of concern. What was wrong with me that I couldn't get pregnant?

Anna Jaworski:

I think maybe it was God's plan for me to wait for a while, and I think I needed the maturity that comes with being a little bit older to navigate the complexities of having a child with special needs. My first child luckily didn't. His own special character taught me about how to be a mother to a very challenging child, but not Medically challenging. And then, when I had hope, being 31 was a good thing because I knew how to do research. I knew how to be an advocate for my child. I did have some of that extra wisdom that comes from being a little bit older, and I'm glad I wasn't 20 or 21 when I had a child like that.

Anna Jaworski:

I think it would have been tremendously more difficult. But just learning How precious each and every day is and not taking these for granted and saying to yourself okay, this is an experience I would like to have. It comes with some risk. Let me minimize that risk. You called your cardiologist, you did your research, you knew where you could go for help if you needed to. That's just brilliant. I wish everybody would do something like that, because every trip that you take comes with some risk, whether you have a medical condition or not, and it just makes sense to know where can I go, especially if you're going in a place where you don't speak the language. And the thing about India is What are there? 42 different states and just as many languages.

Leigh Kamping-Carder:

Yeah, it helps that English is an official language. But, yeah, absolutely every state It's very different and different languages.

Anna Jaworski:

Yeah, now did you have a friend in India, or had you read something or seen something that made you decide This is where I want to go.

Leigh Kamping-Carder:

Yeah, i think I had just always been interested in the Culture and the food. So in Canada when I was born, there were these things called baby bonuses, where the government Would give you like a few hundred dollars for every baby that you had, and my dad just put it in like a high interest savings account until I was 21. And so I Graduates from university and had a few thousand dollars in this account and I knew I wanted to take some time off before grad school and I'd always wanted to go to India. So I was like, alright, this is what I'm using the money for, i'm gonna go Wow.

Leigh Kamping-Carder:

And I spent the first month in a rural development project north of Delhi. So I met people as part of that project and Pray the time I traveled with some of them week Chris Cross path. Part of the time I was alone. Part of the time I met other people on my travels. Yeah, there was a whole community of backpackers, so it didn't feel Totally alone. But I did not fly with a friend or plan the trip with a friend.

Anna Jaworski:

Wow. And how did you feel when you said, hey, i'm gonna go to India, for I. Don't know how long did you say you did that? a couple like four and a half months Yeah, it's a long time. How did your mom react?

Leigh Kamping-Carder:

I think in her heart of heart She was probably really freaked out, but I think she also knew that I was gonna do it anyway And I think she knew that it would enrich my life. What?

Anna Jaworski:

you did, sure I hope wanted to do an internship in Germany and I felt by the time she was of the age to do that, which was also when she was in college, i felt, if there was anyone who deserved to spread her wings, of why it was hope after everything she had been through. And We did the same thing. We found out about the doctors. Now she actually went and stayed with some friends of mine who the mother and father were her parents, so I knew that they knew the doctors, they knew the hospital. It wouldn't freak them out. They knew the lingo, so that made me feel a little bit more comfortable. But I had a lot of my friends who had perfectly heart-healthy children say to me How can you let her go all the way to Germany without you? and I said, no, she can do this.

Anna Jaworski:

When the kids were young We did a lot of traveling, so I knew she knew how to negotiate being in an airport and She had been on every kind of public transportation you can imagine, including gondolas in Italy. So I knew she would be able to figure it out. Like you said, i think it was an enriching experience for her and By the time you're in college. You don't want your parents tagging along. You want to spread your wings and Good, yeah, yeah.

Leigh Kamping-Carder:

Yeah, and I think my family was the same way. We traveled a lot. My older sister Looked in Singapore for a few years and in San Francisco My mom had moved to Massachusetts. I Did school about as far away as you can get in Canada, so there's some precedent for it.

Anna Jaworski:

Wow, this has been so much fun. I had no idea we were gonna go there about travel. I love to travel, but I have never been to India. It's too bad that you don't work in a job where you get to travel and right. Have you ever considered getting a job as a travel writer?

Leigh Kamping-Carder:

Not was a travel writer. I have had a job before where I did get to travel from time to time for work, so yeah, that was a lot of fun.

Anna Jaworski:

Yeah well, i Thoroughly enjoy getting to know you a little better and getting to know about the heart dialogues. Let's tell everybody how they can find it, and then I'll include it in the show notes too, lee great.

Leigh Kamping-Carder:

Yeah, so you can sign up at the heart dialogues dot sub stack comm and It's free. It comes every other week and again, the heart dialogues dot sub stack comm.

Anna Jaworski:

So the heart dialogues. Easy to subscribe you go to the page, box pops up super easy and you'll get all kinds of wonderful content. It's totally worth it. I completely endorse it And I'm hoping that you'll want to be part of the hug podcast network. We have a media channel and we don't have any newsletters up there, so I would love to feature your newsletter on our media channel. Oh Yeah, sure, then people can go from my page to your page and I can get your beautiful newsletter. Awesome. Well, thanks for coming on this show, lee. This was fun.

Leigh Kamping-Carder:

Yeah, thank you so much for having me. I really appreciate it and this was really fun.

Anna Jaworski:

Friends. That does conclude this episode of heart to heart with Anna. Thanks for listening today. Hope you found this program helpful. You have any questions about the show. Please feel free to send them to me at the hug website That's heart unite the globe org. Or at Anna at heart to heart with Anna comm. I'm sorry, it's really long to spell So it's easier to go to the website, but I'll put the links in the show notes. Okay, so any of you are on your bike or in your car, you don't have to worry about grabbing a pen. The link to the heart dialogues and to my website will be in the show notes. Have a great day, my friends, and remember you are not alone.

HUG information:

Thank you again for joining us this week. We hope you have become inspired and empowered to become an advocate for the congenital heart community. Heart to heart with Anna, with your host, anna Jaworski, can be heard at any time, wherever you get your podcasts. A new episode is released every Tuesday from noon Eastern time.

Leigh Kamping-Carder and congenital heart defects
Leigh Kamping-Carder on "The Heart Dialogues"
(Cont.) Leigh Kamping-Carder on "The Heart Dialogues"
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