Welcome to Candid Hearts!

Welcome to Candid Hearts: Conversations in CHD.
We’re Meagan and Amy, and we’re so glad you’re here.

This podcast is a space for real, honest conversations about congenital heart disease. We’ll be sharing stories not only from our own journeys, but also from other CHD patients and families who know this life firsthand. Together, we’ll talk about all aspects of CHD—the good, the hard, and everything in between.

We’ll also bring you a special segment called The Murmur Mill, where we debunk common myths and rumors surrounding CHD and shed light on what’s fact versus fiction.

Our hope is to create meaningful content that helps all of us learn, grow, and feel less alone as we navigate life with CHD—together.

Thank you for joining us. ❤️

If you or someone you know would like to be part of the podcast you can message both Meagan and Amy at:  candidhearts25@gmail,com

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My HLHS Diary- Amy Erhart Cunningham

My HLHS Story- Meagan Houpt

Transcript

  Welcome to Candid Hearts conversation in CHD, where real stories meet real hearts and nothing is off limits. We are your hosts, Amy Earhart and Meagan, Houpt, and every other week we'll dive into the moments that broke us, the ones that built us, and the people who remind us that even on the hardest days, hope still beats strong.

In this space, we have honest conversations about life with congenital heart disease, the challenges, the triumphs, and everything in between. These are raw, heartfelt talks, all centered around the heart because behind every diagnosis is a life, and every life deserves to be heard. This is candid hearts.

These are our conversations in CHD

Hello everybody. We are Amy and Meagan, this is our introduction to our podcast. I'm gonna let Amy share her story and we will go from there. Thanks, Megan. Hi everyone.

Thank you for joining us on our new podcast, candid Hearts, a conversation in CHD that feels really weird to say, by the way. So just a little bit about myself. If you've listened to my previous podcast, diaries of a Heart Warrior, I have hypoplastic left heart syndrome, HLHS, also known as Single Ventricle.

Which basically just means that the left ventricle of my heart is severely underdeveloped and in some people it's non-existent. So the main pumping chamber is not there, essentially working to pump blood to my entire body. So I was born in 1983. I am officially 42 years old going on 43 this year in October, and I was born in a really small rural town of Kalida, and my mom and dad had no idea that I had a congenital heart defect when I was born.

I came out as a blue baby, as I've heard most of us do. And from there in Lima, they were not capable of taking care of me, so I was then sent off to Toledo, which was the Medical College of Ohio at the time. I had. Pretty much all of my surgeries there. I had the Blalock taussig shunts there, and I had my Fontan November of 1987, so just after my fourth birthday.

And thank goodness for me, that is the only open heart surgery I've ever had to have thus far. Let's cross our fingers. That doesn't change anytime soon. You've only had one, one, and then the one surgery, and then, so that was a shunt. So the Blalock taussig shunts I had at days old and then months old.

Okay. And then the Fontan. And then the Fontan at four years old. Okay. So the Blalock, tussic, shunts, along with medication did what they had to do until I was four years old. Yeah. And then at eight years old, I was very bradycardia. So they had to put the ventricular pacemaker in. And that was at eight.

I do recall, at that time you have growth spurts, so I don't even know how long after it was, I must have had a growth spurt and the wires broke, so I had to go back in and they had to replace those wires and that those were like the major things that happened. I know when I was little, I carried a lot of fluid.

My parents would have to take me in. I know you are now back in Michigan and there was a small point in time that I did go to Ann Arbor. I believe it was Motts and I had some cardiac catheterizations done, but so long ago. I just remember the drive being horrible from where I grew up. It was a three hour drive and we had to leave super early in the morning.

Yeah. That was not fun. And then my provider left Toledo and went to Cleveland Clinic, rainbow Babies. So I was there for a few years and then after that, he left again and went to Jersey. Story goes, my mom and dad were tempted to follow him. We did not. He's there. That's fair. I know, right?

It was, he was wonderful. He was amazing. We did not, and we were then referred to Nationwide Children's in Columbus, where I had Dr. Allen for most. I should say all of my teenage years, probably a little bit before my teenage years, all the way up until I was in my twenties, when he decided to refer me on to the adult clinic at Children's, which is where I am still today.

And it doesn't make me mad. I love it there. I think their care is outstanding, wonderful. Couldn't talk more highly of them, but throughout the years, I can honestly say. I've been fairly healthy. In 2014 and 15, I did have a stint of a lot of AFib. They took me off of a medication thinking that I was, I don't wanna say, thinking that I was okay, but I hadn't had a breakthrough in quite some time.

But once I went off that, I was getting cardioverted. Every other month, if not twice a month sometimes. And I actually was just in AFib a few weeks ago, and we had discussed that in the hospital about how. 2015 and 14 was a really rough year to go through that. So the medication that I was on back then was amiodarone that they took me off and they put me back on.

And while it's not a fantastic medication, 'cause it kills a lot of other things, eyes, liver, lungs thyroid I refuse to go off of it at this point because it works. Girl, I feel that it's so hard to do a medication change and we were in there and I'm also on a beta blocker and my EP provider talked about changing that medication, and I just looked at her and I was like, not now.

And she said, I didn't say now. And I'm like, I'm just telling you now is not the time. You're like, absolutely not. Thank you. Yeah. Overall life has been fantastic. Like I said, . Turning 43 this year. And I couldn't be more excited. Life somehow, and this is no joke.

While it's getting harder in certain spaces, I think in the CHD world, it just keeps getting better for me. Yeah. The people that I meet, the things I'm being able to do, I it's just been wild and really cool over the last few years and how many people I've been able to meet. That's awesome.

Yeah. Love that. Interesting. Your surgeries differ just from a few years. Oh yeah. You are younger than me. Yeah. It's super interesting. But also, wasn't the Fontan only started in the eighties? I feel like it was in the seventies, because some other older people that I have interviewed, I wanna say it was in the seventies.

I guess. Let me give that real quick. Still, it doesn't feel like it's that long. Yeah, no. To be like, oh yeah, this works. It's just so interesting. And I don't know the sixties. Oh, 1968, but still, that's only almost 20 years. Yeah. Before you had anything. Isn't that wild? That's so weird to think about.

Yeah. And then to think that it was like the Fontan, then they had the modified fa fontan, all that kind of stuff. Just the change. Yeah. It's all, but they're still doing it today. Yes. Yeah. It's insane that there's nothing else that's better. It's wild. There's something that's better maybe.

I don't really know, but it's wild to me now that they're doing three surgeries on. You had the three, you had Norwood, Glen, and No kidding. Yeah, that's why I'm like only a few years and it's different. Interesting. Yeah, it's super weird. Okay, so tell me about that real quick. Okay. I was born in Ann Arbor, Michigan.

My mom gave birth in Ann Arbor, not at University of Michigan. Different hospital. I think it was St. Joe's. They actually sent me home. I wasn't like. That blue apparently. So I went home three days, three or four days later. My mom was like why does she look weird?

And they went back to St. Joe's where she gave birth and they said, we don't know what this is. And sent me to Mott. So they sent me over to Mott and that's when they're like, oh, she has hypoplastic left heart syndrome. We need to do surgery. And my parents are probably like, what? We took her home. What are you talking about?

So , they chose to do the surgeries. 'cause what else is there at that time? So I did, I had the Norwood at five days. So I was five days old for the first one, and then I had the bidirectional Glen at nine months and the Fontan at two. So just those few years, they did everything way earlier.

Because you said you had the font at four. Yeah. So weird. Which is, that is interesting because my Blalock shunts were at like the days. Yeah. And then the months. Yeah. Weird. And I have all my medical records, so it's really interesting to read. Oh yeah. Sometimes not interesting. And I'm like, Ooh, I don't like that.

Because I think there's a point. Were they like, I think, I forget what it's called, but were they like, freeze you or cool you. Yeah. And I'm like, Ooh, that's really weird. I don't like that. Anyway, I had all three surgeries at Mott with Dr. Bove, who a lot of people know. I don't think he's still practicing.

He's probably in his eighties or nineties. But yeah, I had those three and then it was a couple cardiac caths probably around. Five and seven that I've read in my records. And 10 maybe. I don't really even remember any of that, to be honest. My childhood was also covered with divorce, so don't remember the health parts,

I went off to elementary school, like a normal kid went to middle school. I didn't have anything really happen until my twenties. Went off to school, went off to college, did the college thing that we're not supposed to do. Yeah. But that'll be another day. And just lived life. Met my husband in college.

We moved in together like it was, nor like I didn't have issues. And then I will never forget, my dog was laying on me on my legs, got up, indent, like a full on, like all the way in and I'm like. What is happening? How old were you then? I was , 27 getting married in three weeks. Oh my god.

Terrifying. And I'm like, what is happening? Because it was bad. Like it was indented to the point of am I okay? Went to the, to the local ER because. I didn't think to call my cardiologist. Nothing else is happening, like I don't feel anything HeartWise. They put me on Lasix at the ER and then transmitted me over to my cardiologist and they're like, oh yeah, we're gonna do A MRI, all that stuff, which I don't do well with MRIs.

I don't know about you, but I just don't, never had to have 'em 'cause my pacemaker, which has been glorious. Oh, lucky you. No, never thought I would say that, but lucky you had that done and they're like, oh, your aorta is not working. Like it's closing. And I'm like, what? What do you mean it's closing? Can he married in a couple weeks?

So literally the next day they did a cardiac cath and put a stent in, just like that. And I was like, okay, let's go. Wow, I haven't had anything in 20 years. Let's go. Terrifying. Probably the most terrifying mentally, because I haven't had anything Uhhuh. So like I had the three open heart surgeries till two and then nothing till 27.

Besides a cath, but nothing. So they're with you then? Future husband or mom and dad? Yes. Everyone. Everyone, because they're like, what is happening? Got the cath done. Legs are better. Not a lot of fluid, but that was terrifying. Especially thinking, oh, I'm fine. Like I don't need anything else.

I never thought I was fixed. I wanna say that, but I just never thought anything would else would happen. Yeah, I guess just 'cause it hadn't in that much time. They wanted to go back in and balloon it. So I had a few years of three or four caths within each year. Which sucked.

For me, that was horrible. But everything's fine. You can see the stent . It's working. It's all good, but now it's more pulmonary hypertension and liver. And I'm like, great. What do you want me to do? Where do you wanna put the extent this time, but I've learned they cannot go in the groin anymore.

Oh, really? It's like completely, almost, completely cut off vein wise. Weird. Which is really interesting. And they're like, oh yeah. So they always go in my neck. No. Interesting. Honestly, better, because they don't have to lay down for hours. Yeah. Like they do with your groin. But it just, I just have a snake bite on one side that it looks like, but.

Interesting. I haven't had a cath, that's how long it's been since I've had a cath because Yeah, literally it's last time it was in my groin. Yeah. But I guess they went down there as a kid a lot and it's a lot of scarring and a lot of, and it can't really make it in. And I'm like, okay, who knew?

Where else can you go? Yeah, I do know you can go through the wrist. And the neck. So thank God they went through the neck 'cause. Yeah. But yeah, so nothing, knock on some wood. Yeah, I'm good. Besides medication skyrocketing and changing things and outta my control, which is annoying, but because when you come to medication, I don't wanna change it.

Yeah. If I'm working and I'm good. Let's just keep it the same, keep it status quo. I'm right there with you. So you did not say how old you were, if you don't mind me asking. Oh, I am to, I am turning 36 at the end of this month. Okay. Yay. That's weird to say. I don't wanna say it. No. Oh man, I, here's the wild thing.

So when I turned 42, like a month later, I was already saying I was 43. I am like ready to be old. I wanna be 80. Retired sipping my coffee on the front porch. I don't know. No, those are goals. I don't wanna get older. I just wanna be like, nothing changes. I don't age, my heart doesn't age. We're good. .

Wouldn't that be not right? Everything else can stay the same. I just want my age to go. Yes. Yes. Health wise. Where I am now, I feel like I'm pretty, pretty good. Yeah. Yeah so I have HOHS, but I also have VSD/ASD and they found a coarc in my twenties for that. Okay. It's all put together.

Any other anomalies?

I don't think so. No. That's interesting you say that 'cause I did not. I, aside from the HLHS, I was born without a spleen. Oh, and my abdominal organs are flipped, so I have situs inversus interesting, but not the heart. But my, but not the heart. The heart is not, the heart is correct, but it's my abdominal organs that are flipped.

So I have situs inversus as well. Interesting. Which makes things a little bit more interesting when you go in for surgeries, like I have my gallbladder out opposite side when they do ultrasounds, the liver's on the opposite side I'm always like let's go the opposite. Do you play any games with them?

Not really. I feel like, oh, I do. Sometimes I let them figure it out. Especially when it comes to liver ultrasounds. 'cause I'm like, you should be reading the chart. Yes. And my diagnosis is situs inversus, so you should know what's on the other side. I've had one ultrasound tech be like, wait, what's going on?

And I'm like, it's the opposite side. Ugh. I would play with them all the time. Really? I do it now with oxygen.

They're like, oh my God, are you okay? And I'm like, yeah, I'm fine. It's just me. Yeah. I don't know, I just, that's the only time I sometimes just let 'em figure it out. Not that I necessarily That's hilarious. Yeah. So I went to a Echo Tech conference one time 'cause they wanted just patients that they could like work on. And they're like, you can't tell anybody what you have. And I'm like, okay. So they all were like trying to figure it out. Oh my God, it was so fun. That would be awesome. They're like, do you have this? And I'm like, no. Or yeah, I've got fontan. Like it was fun. It was a good time. Do you ever, when you go now for ultrasounds, when I watch and I'm like, oh, what is that?

Yeah, and I feel like it was a huge missed opportunity in a career. I'm like, oh man, that would be so awesome. Yes. Yeah. Also, it might bring on some PTSD. That's true. That's true. But I feel like being able to relate with the patients in the office would be huge. I remember having an ultrasound and I had I don't even know what it's called, but like a missed beat.

Is that arrhythmia? I don't even know. Yeah. Okay. Yeah. And they were like, oh, does that happen often? And I was like, no, and you're gonna give me a heart monitor and then what do they do? Give me a heart monitor. I was like, dang it, would you have to do it right then? And of course I never had it again.

It's just, of course we're gonna do an echo and bam. And I'm like, god dang it. Yeah. Always the way it seems to be. Ugh. Yeah. They just did a liver ultrasound and I was looking and there was like a whole, like when they put the color on. Yeah. And I was looking and I'm like, oh, those colors look fun.

Tell me what those are. And she was like, oh, that's the main artery into the liver. And I'm like, or not the artery. She either said artery or vein, I can't remember. And I'm like, oh, okay. Just to see it as an adult in a different life, it feels much different. Because as a kid you have no idea. No.

And Or do you care? No. And my husband watches sometimes too, where he is like, what is that? And I'm like, you can ask questions like, yeah, I don't know all the answers there. I don't know what they're looking at. A hundred percent. Oh my gosh. So I love that we're both doing amazing and yes. Married and you have a family and yes, all the things.

But what's also weird having a kid is that when he was nine months, I was like, wow. I was very small and I had surgery at that time. Yeah. Mention how tiny your heart is and now he's about to be two. And I'm like, wow, I had my fontan at that age. That's really weird. And I know he feels things.

Yeah. And I'm like, oh my God, I can't even imagine how I felt. Not that I remember clearly. I know there's definitely I don't remember either even at four I, and I'm really glad I don't remember. Same subconsciously, some things pop up when I'm in the hospital, but otherwise I'm good. Yeah I would have to agree.

I think now as an adult, it's the. Reality and the fear. Yeah. When something happens, you're like, oh crap. Like the thing. Are things changing? Yeah. I'm getting older. You know what's next? I know we talk a lot about the shoe dropping is, yeah. Is this now the time that the shoe's gonna drop and. Those are the things now that I worry about that even in my twenties I didn't worry about, I thought I was invincible in my twenties because something would happen and it was like, okay, let's just go in, , get it taken care of, and then good to go live your life.

And now even in my thirties, things just started to change. The reality of it just gets more. Real and daunting almost. Yeah. But I think it's also 'cause like we don't know anybody that much older than us. Yeah. And I'm like, where's I need the people that are in there? Okay, so if it was in the seventies, those people would be what?

Seventies. They're into their fifties at this point. Yeah. And like we met Michael at the conference who was in his fifties, right? Yeah. He and I was like that. Do you people say that?

We are hope no. That man. Yeah. Yeah, for sure. I was like, holy Molly, you are 20 years older than me. That's crazy. Yeah. Which is awesome. I, yes. . It's definitely different to see and I am curious to know if they know anybody that we, have they met that we dunno. Yeah. Older than them, which I don't know what the probability of that would be.

But even when you ask younger people, and I have before, like what does it feel like looking at someone who is 20 years older than you? Does that give you hope? And I think in your twenties, not that it doesn't, I just think some people are like. You're older than me. Yeah. And to me, I look at even someone who's approaching 50 and I think to myself, holy cow, I, it's amazing to be able to know someone, and I know we're just working to get to that older age and the research to be able to help us live the longevity.

And even for the younger generation to be able to live longer than we have. But still, the fact that we are the oldest generation is insane. And now the fact that , there are more adults than children. Yes. Which is so weird. And I'm like, they're doing something right. Yes.

Yeah. Finally. Woo. 'Cause it used to be just getting through the surgeries. Yeah. And now it's more of your quality of life. After. Surgeries. Yeah. Which is nice. But also, I don't think I'll see the research in our lifetime. I don't either. Which is weird to think about, we're a part of it, but we won't see it.

It's just weird. Yeah. Like this whole thing with Heart Works. Yes. And being part of that research. I know it's not a tomorrow thing. No. And I would love to see that come to fruition. Yeah. I just don't think I will and I will be a part of anything I can be a part of. Yeah. Even if it doesn't affect me because it's clearly not just about me.

Yeah. But it does feel like I want. I want to reap these benefits. Yes. Not because I'm being selfish, but I'm being selfish. Like I wanna see the benefits of what it's going to do in future generations in me. Yeah. Yeah. I feel the same way. 'cause I know I wanna do it for other people, but I also , I kind of wanna, for me, yeah, a hundred percent I want this too.

I guess I'll call that me being selfish, but yeah. I think that's fair though. Like that God, what was it called? The fontan thing? It looked like a triangle. Dr. Rodin field stuff. I cannot remember what they called it. But it's like this PO like a fontan pump, I think is what it's called.

And they post on the page every now and then, but I'm like, what's happening? Is it working? Are you doing I don't what's happening where heart works does tell you a lot of stuff, which is great. Oh yeah. But I'm also like, okay, what about this thing? Is it, are you doing anything?

Yeah. I know you got the money, so is it being created? What's happening? Yeah. Show me. Show me what you're doing. I know, but to come up with the money and to oh God, I can make it sustainable. Yeah. It's a lot. Plus to pay people to do it. To work on it. Yeah. Yeah. It's crazy. I know.

I don't even know. That's why when I, in the beginning when I was like, I'm one, I'm surprised that nothing has been better than the Fontan. After all these years, nothing has changed really. I wonder if they keep refining the fontan, maybe, I don't know. It'd be a good question. Yeah. For a provider.

True. We should ask that at font next year. Should. That wouldn't be a good question. I'm gonna ask that. But it's interesting. There's nothing. Nobody's created a different surgery. Like you got the Norwood, we got the Glen, we got the font, but there's nothing better. That doesn't affect everything else.

Which clearly they didn't know that in the eighties and nineties. Oh, heavens no. Gosh. They're just finding out. Really only in the last 10 years, look at the conversations that people are saying , I've never heard of this until I was at this point. Yeah. As I was at this stage. And I think that's a disservice too when you look at the fact that , like you said, they're just now finding out about Fontan associated liver disease.

Yeah. I'll even say for the system that I'm a part of at Children's and OSU, there's only really, from what I am aware of, two providers that deal with FALD Oh. At OSU. And I have Dr. Kelly and he is one of the most amazing human beings I've ever met in my life . He, I just had an appointment with him and the conversations aren't, it's not all doctor patient.

Yeah. It's truly trying to get to know the patient and this is where I see you and I don't, he's I look at you, and he's I would never guess. He said, you are probably oddly enough, one of the healthiest patients that I see. That's good though. It's amazing, I don't, one, I don't know how many he sees.

I know he sees a lot of patients, but even how many he sees in the Fontan Associated liver percentage. But even at that, at the appointment we had talked about, some that he does see and how far they're progressed already. Yeah. Through cirrhosis and it's turning into cancer and Yeah.

When you don't have those types of providers in your healthcare system, I wonder if that's why they're not referred on or maybe the cardiologist decides to follow it on their own. Yeah, until they can't anymore. I don't know what that looks like at a facility, but yeah. So before I started at Emory, which does have a single ventricle clinic, which thank the Lord for that thing, but I was in Orlando and my cardiologist in the beginning, he was great and I think he lost interest and I think that happens with cardiologists, which is fine because in the beginning he was amazing and I was like, oh my gosh, I found amazing cardiologist. And then it just faded and I don't know really what happened, but then he called me and was like, oh yeah, like I think you have cirrhosis of the liver.

And I'm like, what the fuck is that? Yeah. What do you mean? How did I get that? I had no idea. And he was like, oh yeah, so just go see a liver specialist. And I'm like, well, I'm confused. I'm so lost here. I had no idea what we're talking about. And they're like, oh yeah, here's a couple that you can go to.

No idea what FALD was. No idea. No. And thank God my husband was there 'cause I would've lost my mind. Because he was like, oh yeah, you can't get liver disease from the heart. Okay, got it. The liver specialist said this? Yes. And I was like, okay, now I'm even more confused and I don't know what's happening.

'cause my cardiologist is telling me one thing and you're telling me another, and I don't know what this is. So then I finally was like, screw it, we're gonna go to Emory, which was seven hours from Orlando. And I'm gonna get into the program there, figure this out. Went was there all day long, saw cardio, saw a liver, and they're like, oh no, you're fine.

You have fibrosis, but it's not gotten too cirrhosis yet. And they're like, okay, so what does this mean? And they're like, okay, it's coming from your heart, from the fontan, blah, blah, blah, blah, blah. And explaining everything. I was like, oh my God, where have you been all my life? You took the time to explain it because I'm like, I don't know what this is. Yeah. And then after the experience with that liver person, I was like, this is weird, uhhuh. And then I lost I wanna don't wanna say respect, but I did lose respect for my cardiologist because he literally set me up for failure.

That sucks. And didn't explain anything. He was just like, oh yeah, you have this. And I'm like, wait, how? So then. Emery's been amazing, and they just do everything all in one day and get it done. But now I'm at Mott again since I'm back in Michigan. And they also do the same thing. So it's just been like, okay, don't go to these little, like the Orlando's, not little, but clearly did not have the support system for a single ventricle that we needed. Yeah. Yeah. I remember the first liver specialist that Children's referred me to over at OSU. And I saw him once and I refused to see him again. And when I went back to Children's, I told them, I said, I will not go.

He made me feel dirty. He asked about my sexual history. He asked about my tattoos, where I got them, how sterile the environment was, and how much I drank. That's what's automatically associated with liver. And I felt like a piece of trash walking outta there. And I told the nurse children's, and I said, I'll never go again.

And I'm like, I'll see a nurse practitioner, but if I have to see him, I'm not going to see him. No. And I wasn't the first one to complain about him, and I'm like, highly recommend you not send anyone to him. He doesn't understand I should not be questioned about these other things in my life when, for a fact it's coming from something else.

My heart defect. And furthermore I just don't think you need to know all those things. Like the, I don't know. I don't know. Even at 42, I would still be uncomfortable if someone asked me those questions. Yeah. And I was in my probably late twenties, early thirties. Yeah. And that happened.

And going to that appointment, I was livid when I walked out. Oh, I'm sure. Livid. I was like, what did they just send me to? But again, I was not afraid to say anything to the cardiology office because I was like, no one else should have to feel this way. Yeah. Oh no. I called and I was like, I don't know who you sent me to, but he doesn't know what he's talking about.

Yeah. I'm not going back. Yeah. Yeah. It's wild. Yeah. Oh, good stuff. I feel like this brings us to the point where this is where we wanna take our podcasts, right? Yes. To me, I love these conversations. I think you and I have had a lot of these conversations Yes. Where we can just talk openly and honestly about our healthcare and how we feel and all the things that we've been through.

And I truly think in our discussion of what we want candid hearts to be. This is exactly it. Yeah. And just a conversation. Yeah. Literally a conversation with each other, with people and to bring the content that I am sure a lot of this feel has happened. Like I, I really don't think that I'm alone, but because I don't know anybody else, I feel like I'm alone.

Yeah. And I think it's important for everyone. To know that's not necessarily the case. Definitely. Yeah. 'Cause growing up I definitely didn't know anybody. Yeah. Oh no, I didn't know. I didn't go to Heart Camp. I didn't go to, I didn't know anybody in my high school. And then after we graduated, I got a message after I created that page and they're like, oh yeah.

I have TOF I was like, I had no idea. Yeah. There's someone in my sister's class that has TOF. It's so weird. Interesting. I, and he was in my sister's class and his sister was in my class, and I never knew that. Like, why are we not talking about this? I remember when I was a like assistant teacher and there was a kid and they're like, oh yeah, she has a heart defect.

I said, oh, which one? I know, like it's sad to get excited, but Right. There's a little bit of excitement there. Yes, and I have always said, I feel like I, I've said this so many times as, as dumb as it might sound, it's like the. You don't even have to have anything in common except for having a CHD. Yes.

And you already feel like that weird bond connection. Yes. It's like this secret thing that, yeah, people can't feel, just like you said oh, which one is it? Yeah. I wanna get to know them. Yeah, because which is weird that's the first thing that we say, but then it's also Hey, we might have the same thing.

And not only that, if you're that much younger than me, or even if we're the same age or you're older than me, I wanna learn from you. Can do you, maybe we can be friends and learn from each other. I had interviewed somebody and he had a really good friend who. Had another heart defect and anytime he had a question, he would call this buddy and ask him and be like, this is what I'm feeling is this.

Okay? I think that's insanely important Yes. To have those people in your life. Yes. Whether or not they're older, younger, the same age, those opportunities. In my opinion are huge. Yeah. Because there are so many people I know younger than me that have been through so much more than I have and I can learn from them.

Yeah. But then also it's like my husband's never gonna understand it. Oh, never. So just to be able to be like, Hey Amy. How do, did you ever have this? And you'll be like, yes or no. I'd be like, okay, great. Yeah. And then I just go find someone else if you have it. And to feel comfortable asking Yes.

I know there's people out there that can make you feel a certain way when you know the same questions come up on platforms. That's just humans, being humans and having different personalities, but for the majority, I truly believe that the community honestly wants to help each other. Yeah.

For, and I think a lot of times some people are just so brass. Yeah. That even. They want to help, but the way it comes across, yes. Doesn't seem that way. Just because they're point blank people. Yeah. Probably because I'm a point blank person. I don't necessarily feel like I need to hide anything that I've been through.

I can tell you whatever. Yeah. But I'm not trying to be dismissive. I'm just trying to be honest. Like why sugarcoat it? Yeah. And say, oh, everything will be fine. No, it freaking sucks. Yeah, it sucked. It was awful. Yeah. All the things , so while some people need that sugarcoating, that's just not some people's personalities.

But it's also nice like now with social media, yeah. If we didn't have social media, I would've never met anybody. Yeah. Maybe a conference that I heard about over email. , How else do we hear of conferences? Yeah. Social media, literally. Word of mouth. I already know these people to text me that there's a conference.

. I would never have met anybody if it wasn't for social media platforms that I love and hate sometimes. No I definitely agree with you. And that our parents never had that. They had the hospital,, I remember my parents talking. They're like, oh yeah, we would always talk to the people next door.

And I'm like, that's so weird that I could just message someone from Australia Yeah. On social media and they'll message me back. And they didn't have that, which we grew up in that age too, of nothing. And then bam, all of a sudden we had stuff. Yeah. But. I'm so glad we do, because now these parents can , look at our pages and be like, oh my gosh.

She's fine. And I'm like I'm fine, but I'm not fine. I'm here, I've, and we just talked about this word Yes. Night. Like I've survived. Yes. Like I've made it. Yes. However, I, we still have our struggles. Yeah. And more not. Just in the heart world, as you get older, other things.

Other things like, you have a child now that you have to think of Yeah. As a 42-year-old without kids. I sit there and I think, will my nephews remember me? Yeah. So it's weird. It's it is so weird. It's so much more than just the heart. As you start to age it. Yes. It becomes.

Everything becomes everything. I don't wanna say you care so much more, but I but I think you do just because now you have people. Yeah. Versus as a kid, yes, we had friends, but it wasn't like, you didn't realize those bonds Yes. As what it really meant to have family and friends stand beside you.

Yes. Yeah. Exactly. Yeah it's funny 'cause I'll comment on those, HLHS pages sometimes when people are like, oh, we just got diagnosed. I don't know what to expect. And I'll be like, Hey, 35 here about to be 36. Here's my page if you have any questions, blah, blah, blah. And I wish our parents had something like that.

Yeah. Because I feel they would've felt more supported. And then not as many questions, yeah. 'Cause it was always just talking to the surgeon and then talking to the people on the same floor. Yeah. And that's it. And I feel like when new parents post, I don't post on there a lot because I think to myself.

What can I offer? I don't remember anything as a kid. No, I don't either. I offer you adult. Yeah. And I can offer you how my parents treated me and how everyone else treated me. Yes. And that I grew up in a very normal childhood with, I think that's what they want to hear. And it probably is. Yeah. Honestly, it probably is.

But to ask about surgeries. I don't know. I don't. And furthermore, like we just discussed, I didn't go through three. Yeah. I went through one. So it's different. Yeah. It's so different. I, and I think that's why a lot of times I don't necessarily respond to those. Yeah. Even though I guess maybe I should because maybe there is something I have to offer.

Yeah. I just got a friend request on my personal page, which I know a lot of people try to do that. And I said, just follow my page. I post different things. I was like, Hey, do we know each other? 'cause I always ask because I'm like, have we met at a conference? And I don't remember you.

I don't know. He was like, I know you don't know me at all, but you are someone that gave a stranger so much hope simply by sharing your life. And I was like, okay. That's so nice. And as she's due on the 19th of this month. Oh wow. A little girl who has HLHS and I'm like. Okay, here's my page.

Ask any questions you have, but I will try to answer what I can , but I don't think , we realize how much we do give. But also we're looking for that too. Yeah. No. So it's kinda weird. I absolutely agree. It's just really interesting. Yeah. This is what our page is gonna be about.

I know. I'm so excited. I feel like I wanted to talk about the podcast more and what it is, and, but this is what it's, but I think that you're right. This is it. This is it. I think Don't go off on tangents. Yeah. And then come back to the topic. Yeah. And I am excited to have, I, you always wanna do topics, but then to talk about it with yourself, there's no one else to carry the conversation or whatever. Yeah.  So I'm excited for that. I'm excited to have guests on Yes. Who bring more things to the table. And I know we talked about having the murmur mill. Yes. I still so love, which is basically rumors that you hear that aren't necessarily true in the CHD world.

So I'm excited to have all those episodes along with still sharing people's stories. Yeah. I think all those three points are huge. And then our conversations, like you said, getting off on tangents and, but I think they're real, yeah. To me, is this conversation where I thought it was gonna go today?

No. But do I love every aspect of it? A hundred percent. Yeah. And I hope everybody else does too, because it's not something we typically talk about. In our daily lives. It really just, I don't have a conversation with my sisters and say all these things I just said to you like, I agree. 'cause it's not normal and it's not natural.

Yeah. Here it's normal and it's natural. Yeah. And I'm excited 'cause like we're gonna have our spouses on. Yes. We talk about their sides and doctors and things like that. And just different people. Yeah. So I think it would be great. It'll be good. I'm excited for Candid Hearts and what it has to offer to the community.

For sure. Yes. It's gonna be big.

Thank you all for listening. Yes. We'll see you on the next episode.