I was pretty open with my college roommate. She never really said anything about it. I mean, I have a boyfriend, I explained to him what the scars were from. I feel like people didn’t really ask that often. And with my track team, I explained it to them so that they knew. My friends don’t really ask about it that often. It’s just not a big deal.

 – Emily, age 19, Pacemaker


I’m happier now because I’m at school and if I want to do something, I can just do it. I don’t have to second guess it or ask my parents, “Is it cool if I go on a road trip to New York for the weekend?” or anything like that. But at the same time, it’s kind of crappy because now I see that my mother wants me to start scheduling my own doctor’s appointments. She wants me to take charge and she says, “I’m not going to be going to your doctor’s appointments forever,” and then she says how she wants to go to my doctors’ appointments forever, so…

Before I went to college, there was a big conversation between me and my cardiologist and my immunologist, all at Children’s. They were wondering how sick I would get at college, because a lot of germs fly around at college. They decided to have me try what’s called immunoglobulin infusions, IVIG. The first time I had to try it I came into Boston and they walked me through it, showed me how to do it, and then you can have people come to your home and do it with you every week. They can have someone that comes every week and helps you do it, but I just figured it would be easier for me to do it because in college you’re busy with classes and working, so I decided I’d just have to do it myself, and it’s not hard.

Basically I grab the medicine, the needle, and then the extension wire or cord, and it’s four smaller needles that go into your stomach—that’s what I have, it differs from person to person—and then you put it in a pump, and the pump runs for about an hour and fifteen minutes, and then after that you take the needles out and you’re good for the week. It wasn’t hard to learn, it was just kind of weird to do to myself. I’ve just gotten used to it. But it is weird with roommates, doing that publicly.

I would just say for college, be really careful about drinking because you never know. Like it’s your choice obviously, but you never know what could happen. I was an idiot and was like, “Oh, this sounds like a good idea,” and luckily nothing happened to me, but now I know. I could see how people would be nervous, especially with college.

I talked to my cardiologist, I go to see her every six months. She’s always asking me, “How much are you drinking these days?” Because there’s a connection between HLHS repairs and the liver, and your liver is pretty important. If your liver were to fail, that would be really bad, like not only would you have to wait for a transplant potentially, but I’m like 90% going to die at that point. That sounded really dark, but she’s always asking just to be really careful. I don’t drink hard alcohol, I feel like that’s just a bad idea. But in high school she always gave me the—any doctor really would give me the same like, “You have to be super careful because you don’t know how your body is going to react.”

 – Jake, age 21, HLHS


Taking more responsibility in my health care

My parents make my appointments for me when I’m home. I have a doctor in the town where I go to college—I’ve never actually met him but he’s there in case I have an issue.  I have communicated with my doctor, Dr. Alexander, through email, if I have a question about something I’m concerned about, especially if I don’t feel that my parents need to know about that particular concern.  He always responds almost right away.  It’s pretty incredible how quickly he’ll get back to me. So, I definitely think that as I get older I’ll want to take more responsibility for booking my appointments and being more knowledgeable about what’s coming. I feel like when I was younger, decisions would always be made for me. I would like to be able to take more responsibility over that type of stuff.

I’ve definitely become more curious about my heart condition and since my parents don’t really talk about it that much, it’s something I’ve had to ask them. I know the terms of what I have, and I know generally what the conditions mean, but I definitely would like to become more aware of everything. I understand the pacemaker the most, just because that’s most prevalent, but some of the surgeries I had when I was younger, I’m not 100% sure on the details for all of them.

 – Emily, age 19, Pacemaker


Transitioning is a big thing that we’ve been talking about lately at the last couple appointments, which is how to take care of myself now that I’m older, and especially now that I’m thinking about moving. I’m kind of dreaming about moving far away, which is probably my biggest concern because I’ve always been in Boston, I’ve never really been anywhere else. So I’ve been thinking about moving to Florida or Texas and those are two places I have absolutely no idea where to go to get the same treatment that I get at Children’s, which is obviously a concern for me and my doctors.

We’ve been talking about it and in another year I’m supposed to switch from Aspirin to Coumadin, a blood thinner, which is a big concern because if I were to fall and get a bad cut, that would be a really big potential to lose a lot of blood. So I just have to be more careful at that point. And then starting doing appointments by myself, that’s obviously a big step, and just finding new doctors if I move far away because, I mean, I don’t plan on living in the same place forever.

 – Jake, age 21, HLHS