Mom: What would it feel like when your heart was racing? Can you describe that?
Emma: It kind of just felt like these drums in your heart.
Mom: Like a pounding?
Emma: Yeah, and you would get like, really sweaty and nauseous.
Mom: Yeah, you got really good at recognizing it before we knew what it was. We had no idea it was SVT then.
Emma: And I remember one time in the nurse’s office, I got it and the principal didn’t know what it was, I was just lying on the cold floor because I was so hot, and eventually I think I threw up, but that was a long time ago, and then it stopped.
– Emma, age 9, and her mother, SVT
Alexandra: My parents say that it won’t hurt when you get a new pacemaker.
Mom: We’re on the cusp of getting a new pacemaker now. So she’s on her second, and so both operations were when she was probably too young to remember. But how does it feel day to day?
Alexandra: It feels pretty normal. It doesn’t really feel like it’s there. I always know that it’s there, but you don’t really think about it—I don’t really think about it. And it doesn’t feel like it’s there, but it is.
Mom: Sometimes when you roughhouse with your sisters you can kind of feel it, right? And then sometimes in the summer you notice it because you can see it?
Alexandra: Not really. I’m not supposed to do gymnastics because if the bars hit it, it could like move and really hurt. And security at the airport I can’t go through the metal thing, I have to go through something else.
Mom: What’s the cool thing that happens to our family because of you?
Alexandra: We get to go like really quick instead of waiting in line.
Mom: Because if you call ahead, the special TSA agents will meet you and they move your whole family to the front and they take care of Alexandra, and it’s only because of her that we get that.
– Alexandra, age 8, and her mother, Pacemaker
You can’t be around really strong magnets—metal detectors are something that you have to be careful of. I guess the only thing in track I can’t do is pull ups, because the risk is that the leads could come out, or something could happen to the leads. So I guess just being careful of stretching your arms too much. I mean, I do call the pacemaker company and do checks over the phone sometimes, and I go to appointments to make sure that everything is still working. I would say just be aware of your body and pay attention to if something feels different.
– Emily, age 19, Pacemaker