Alexandra: I don’t really share about it so nobody really knows, except for some close friends. I didn’t really know how to say it.
Mom: You tell your friends you go to Pacemaker camp, don’t you?
Alexandra: Yeah.
Mom: And you have a lot of friends who prayed for you when you had your procedure.
Alexandra: Yeah.
Mom: And remember before you were going to get your procedure, you were a little nervous too and your friends made you a little package? What did it have in there?
Alexandra: It had cards with candy inside. There was all different ones, there was lollipops and chocolate and lots of other stuff.
– Alexandra, age 8, and her mother, Pacemaker
Emma: There’s been many times I had SVT at school and my friends just ask. Most of the people in my grade didn’t worry about it, and I didn’t really mind it, but it happened once or twice at my school and I just explained to them that it was where my heart would go too fast and it was not life-threatening. It was just a little scary. I explained what it stands for. I’ve told people about it at the pool. That was a little hard though. I told my gym teacher before. And I like her a lot, so I told her and that was very useful because then she hung me upside-down when my other teacher couldn’t.
Mom: As long as the adults around you knew, then that made you feel better?
Emma: Yeah.
Mom: Like the birthday party you went to and had SVT at was scary because I had forgotten to tell the other parents that it could happen, and sure enough. I think we also had a letter we gave to teachers, and coaches, things like that.
– Emma, age 9, and her mother, SVT
I tell them basically what it is. Like, what it is and what it means. If somebody asks—like if they’re talking about that they had some other surgery and somebody asks about it, I’ll tell them.
– Austin, age 10, TOF
Sierra: I told my friends that I had to get another heart surgery and they felt bad for me. And they were supportive. They were also very shocked. But I told them everything was going to be fine. I knew it was going to be fine. There was also this girl that emailed me that had a heart surgery. It was kind of the same as my heart surgery, but it was bigger and she described everything to me and it made me feel a little better. Then the school nurse gave me a book about her niece who had heart surgery too and that made me feel a lot better.
Dad: We had tracked down this girl who had a heart transplant ten years ago now. Her dad had a blog and I was able to get in touch with him and he gave us her email and Sierra emailed her, which took a lot of courage to do. So she filled her in a little bit, not all the details, but she actually visited Sierra on the last day she was at the hospital.
Sierra: I was scared and nervous so it was really nice, because she knew how I would feel about getting surgery.
Dad: This girl was doing fine after a whole heart transplant, an active swimmer, pursuing her career in college, had the exact scar Sierra had. She came in with a V-neck shirt and you could see her heart surgery scar and that kind of resonated with Sierra having this new scar down the middle of your chest.
– Sierra, age 13, and her father, Anomalous Aortic Valve
I think most people on my track team figured it out. I ended up explaining it when I couldn’t do the pull ups. I just explained it because I didn’t want people to think that I was just not doing the pull ups because I didn’t feel like it that day. And I have scars from it so I think sometimes people do notice that and will ask. But I don’t feel the need to tell people unless they ask, and if they do ask, I usually give them a very simplified version. I don’t feel like people need to know my entire medical history. Usually I’ll mention, “Oh, I have a pacemaker,” but I don’t mention the other stuff, just because it’s not as relevant since it has been repaired.
One time at summer camp when I was pretty young, this girl asked about my scar and I told her that I gotten in this shark attack. My friend that was with me totally played along with it like, “Yeah, you won’t believe it, it’s a crazy story.” This girl was shocked and I was like, “Oh God, it’s not true.” I don’t really mind when people ask, I’d rather people ask than just not say anything if they’re going to notice. I think people are sometimes surprised when I tell them, just because they didn’t know that about me.
People may know the term pacemaker, but they don’t know exactly what it means. A lot of times people associate a pacemaker with something that an older person has, so they don’t really see a younger person with a pacemaker. I think pacemakers are a lot more prevalent now in younger people, but I remember when I was younger, at the airport, people would be shocked that I was the one with it. They would think that my dad was talking about my mom. So it was just very uncommon. Now I feel like it’s less so, and I’m also older now, but now it’s less of a big deal than it was when I was younger.
I try not to make it a big deal, so because of that, I think people don’t think of it as a big deal. It’s hard sometimes to explain the whole situation to my friends and people who I don’t know because for people who haven’t gone through it, it’s difficult for them to understand. I also think that with heart conditions, it’s difficult sometimes because for other conditions, like diabetes, people have a better grasp of what that is or what that entails. There’s so many different types of heart conditions that it’s hard for people to picture what that means, that’s why it can be challenging.
For example, when I was younger, the management at a white water rafting place wouldn’t let me go on a rafting trip with my Girl Scout troop because of my heart condition, even though I had a waiver and got my doctor on the phone to say it was okay. I think that honestly came from ignorance. They just didn’t understand what my heart condition was. In general, there’s a lack of knowledge compared to some other conditions about the range of heart issues. Because even some of the surgeries that I had were serious, but compared to a lot of other heart conditions, it’s really not going to affect me much long term. I can still do a lot of things, so I think there’s a big spectrum.
– Emily, age 19, Pacemaker
All my friends and family have supported me and they’re there for me. My close friends know. I don’t talk about, but I explained briefly about what it was. A lot of this stuff they won’t necessarily know unless they had some surgery or something like that. When I see somebody, I don’t tell them, it usually just happens, like we’ll go swimming or something and I’ll take off my shirt, and then they’ll see that and they’ll ask me, and I’m like, “I had open heart surgery,” and they’re like, “Oh, what for,” and I’ll explain briefly about what happened and that it got fixed and finally they’re like, “Okay,” and then you just move on, no judging.
– James, age 20, Anomalous Coronary Artery
The first semester of freshman year with my close friends I was like, “Okay guys, just so you know, I have a heart condition” because they were asking, they were wondering like “What are the needles for?” for my infusions and stuff. So I was just like, “I was born with a heart condition, and the infusions are just an immune system booster,” that’s pretty much what it is, so they’re like, “Just don’t let us see the needles!” They’re all fine with it. I mean, it is weird, I can imagine it was weird the first couple of times they saw me do it, but now I live with the same people I lived with freshman year so they’re used to it.
The people that I live with and other people I’m close with, whether it’s friends, or my bosses, all know just in case anything ever happened at work. And then randomly every once in a while someone will be talking about someone who they know who has a heart condition and I’ll just be like, “Oh yeah, I do too.” Last month I was at a dinner party for work, and someone was talking about their son who had a heart condition who passed away when he was 22. I was at their table, so I just happened to mention how I had something similar, but not as serious as their child.
I just say, “I was born with this heart defect, it doesn’t really affect my work life, it doesn’t really affect my day to day that much, however, if anything were to happen at work, here’s what you do.” I have one of those medical ID bracelets. It has a QR code and then you can go onto the website, enter the pin on it and read it. I say, “If anything ever happens, here you go, look at this.” They’re always supportive.
– Jake, age 21, HLHS