Mom: You were diagnosed at the age of three, but you didn’t have your ablation procedure until you were eight. So for five years, you had SVT. Do you want to talk about what medicine was like?
Emma: Oh yeah, I took it every night. I still have the squeezer. You put the medicine into the squeezer, and you would just squirt it into my mouth and then I’d swallow. What did that do?
Mom: It’s called a beta-blocker medication, and it slows your heart down a little bit.
Emma: Isn’t that bad?
Mom: No, it’s apparently a very safe drug.
Emma: It’s a drug?
Mom: Not like a bad drug, a medicine. You took it for five years.
Emma: Each night. It tasted like fish. But I was a very, very open eater, so I don’t really care what it tastes like.
Mom: You’re still an open eater.
Emma: Yeah.
– Emma, age 9, and her mother, SVT
Leah: It’s not hard for me to take my medicine, and I just take it because I don’t want anything to go wrong again.
Dad: She’s been swallowing pills for two years now. It was a little harder when we had to get her to do liquid medication or break it up and dissolve it into water or a variety of things, but she was really young when she learned how to take her pills and it’s been really easy since.
Leah: I put water in my mouth and then I take the pill and I put it in my mouth with the water and I just swallow it. Use liquid! Swallow it!
– Leah, age 10, and her father, HLHS
I take medicine every day. A baby Aspirin. Well, I don’t have to take it every day but I should. Sometimes I forget or we don’t do it but most of the times, I will.
– Austin, age 10, TOF
From my point of view, I just look at it as, “it needs to be done so I just do it.” But taking the meds, having to remember that I have to take it for my heart condition, it’s not really a big issue. It’s just that I don’t want to be taking them.
The medication that I have to take, it’s a little harder to remember because I have to take it during the night, because I have ADD, and I have to take a med for that in the morning, and it counteracts that, so I have to take it at the end of the day, and I’m not necessarily home at the end of the day, so I miss some days, and I don’t want to be carrying a pill bottle, but it’s not really that much of a bother.
– James, age 20, Anomalous Coronary Artery
The only thing I have to do on a daily basis is I have to take a baby Aspirin every morning, that’s it. It used to be a baby aspirin and a couple of other medicines. But for the last eight years it’s just been baby aspirin.
Weekly I do have to do an infusion, it’s called an immunoglobulin infusion, IVIG. It’s for my immune system. So every week I do that to myself, I give myself the shots and it’s like an hour and a half process for me. And then I do the six month checkup at cardiology, and then other than that it’s just regular doctor’s appointments that every other person would have, nothing special. But those six month checkups always have the echo, the EKG, and the stress test.
– Jake, age 21, HLHS