“You got a bum ticker.”

A history professor talks about traveling abroad with CHD and the funny thing about having a weird heart.

Welcome to the first edition of The Heart Dialogues! I am equal parts elated and terrified to send this out into the world. It’s taken me many years to feel comfortable discussing how my heart has affected my life—in all kinds of weird and sad and transformative ways—and I’m still not sure I want to do it in public. But if you’re reading this, I did it, I took a deep breath, and I hit “send.” My intention is to make all of you out there feel a little more brave, a little less alone. If you like what you’re reading (or, frankly, even if you hate what you’re reading!), ask a friend to sign up. Thank you, thank you. Here goes nothing… 💌

Now that John Romero is a father, he’s connecting more with other people with congenital heart disease. 

John was diagnosed at birth with tricuspid atresia, a defect where the valve that controls blood flow between the right chambers of the heart doesn’t form. It’s the same one I have. Like me, John had operations known as a Blalock-Taussig shunt and a Fontan as a kid. He started getting arrhythmias soon after and got a pacemaker a few weeks before his third birthday. Now 33, John is on his fifth pacemaker. 

John is a scholar of Russian history—he spent time in Russia and Ukraine while studying for his PhD—and an assistant professor of history at the University of North Georgia. He lives in the Atlanta area with his wife and nearly 2-year-old daughter. 

Growing up, he wanted to be like everyone else. But shortly after his daughter was born, he got involved with the Adult Congenital Heart Association, a national nonprofit that raises money and awareness about CHD. He serves on its Patient & Family Advisory Board. Here’s the story of how he got there.

What was it like growing up with a congenital heart defect?

As a little kid I was in and out of the doctor’s all the time. It just felt like a very normal part of being a kid, going to see doctors.

My friends knew that I was sick and that there were certain things that maybe I couldn't do. I don't know how I got so lucky with such friends, but when we were even in elementary school, I had friends who would go run to the teacher and they were like, “Johnny, he seems off, something seems wrong.” They would notice changes in my energy. 

One of the big things people with CHD think about is trying to find other people with CHD. As a kid, I never wanted to do that. I didn't want to be different. I had no interest in meeting other people with my illness because I wanted to pretend I didn't have one. I wanted to be just like all my other friends and do all the same things and run around and play in the same ways. And mostly I did. I was limited, but I didn't feel those limitations a lot in the sort of friends I had and the sort of activities I chose. I was never really big into sports or anything like that. So that helped, I guess. 

Today, you're active in the ACHD community. How did that switch happen?

It happened relatively recently. Even after I turned 18, I kept my pediatric cardiologist. It wasn't until I had a pretty major medical episode when I was on vacation in 2015 where I had to go to a hospital. I was visiting family in Boston, and the doctors there were like, “You know, you need an adult congenital [cardiologist].” I was like, what? I ended up transitioning to real adult CHD care. That's when I also found out about the ACHA. 

As a parent, I became much more aware of the idea that I could pass on CHD. And then being a parent who has limitations, that I need to do a better job taking care of myself so I'm around long-term. Getting married and having a kid, I can't just kind of brush it under the rug. It's bigger than just my life.

You said your first serious relationship was with your wife, whom you met in your early 20s when you were both in grad school. How has your CHD come up in romantic relationships? 

I remember in middle school and high school kids making jokes like, “You're never going to be able to have intercourse because you have a heart condition and your heart will explode!”—silly things that teenage boys say to each other which, oh man, I knew weren't true. 

I didn't start dating anyone until I met my wife. It definitely impacted our relationship to some extent. [Erectile dysfunction] is a factor for males with congenital stuff. It was a conversation about, how do I make my body work the way I want when my body isn't as willing to put the blood in the right places as maybe someone else's. 

The other thing, of course, was then thinking about CHD being inherited and me worrying when we were trying for a kid. 

Does your daughter have any heart conditions?

Thankfully she does not. I remember being at [the appointment for the fetal echo]. I knew it wasn't a huge chance, but I was still worried. But they were like, “Looking at her heart, there's four chambers.” And I was just like, “Oh, thank God.” Well, maybe there's something wrong with one of them, but at least there's all four. 

How did your wife react to hearing about your heart and your unique needs?

I know that she worries about losing me earlier. The kinds of things that spouses probably think about each other anyway, but then, especially when your spouse has an illness, you probably think about it more often—the idea of them just suddenly being gone for something out of your control. Anyone could get hit by a bus, but I could get hit by a bus and just have my heart stop working anytime. 

When I had that incident in 2015 when I was on vacation, I had proposed a couple days before. She was in the hospital with me. If she was freaking out, she did a pretty good job of not showing it, but I'm sure she was freaking out. She got a baptism by fire pretty early on in the relationship. I want to think it helped to give her a sense of what might happen later. But that was a horrifying thing to have to deal with right away.

Selfishly, for me, I would want to know how the person is going to react. 

That's definitely true. That's something that's in the back of your mind as someone with an illness. You always think, I hope the other person's going to be able to stand up and do what I need them to do in the moment. Even when I know she is, sometimes it still runs through your mind. To some extent, the only person you can fully trust is yourself. 

When you mentioned your heart potentially exploding, that’s a very familiar phrase to me. It's something that's always in the back of my head—something bad could happen. How do you deal with that and also live your life? Do you have any good suggestions for that? 

Definitely not. [Laughs.] I'm definitely one of those people who pushes things down. I was raised by my mom, who is the beacon of optimism. But that's why I have that to some extent too. You can’t control everything around you. The only thing you can control is your reaction to stuff. There's certainly things in my life that I regret and wish that I could go back and change. But I think overall, if I were to keel over right now, I got to spend a good amount of time with my wife, and I spent almost two years with my daughter and at a job I really liked. I hope that it doesn't happen. But if it does, I guess it was the time and I'll just try and do my best until then. But honestly, mostly I just keep it out of my mind. 

How does your CHD show up at work? 

The first times I went abroad [for research trips to Russia and Ukraine] was before I had transitioned to an adult CHD person. If anything had happened, it probably wouldn't have been great. I went to Russia for a quick research trip [in 2014], and I got sick. I didn't really know what it was, but I felt my heart racing. I was like, I can't stay in this country because I don't trust their medical infrastructure. My mom managed to get me a flight to Germany. I'd been in Russia for only a week. I was supposed to be there for a month. 

Everything ended up being totally fine. But after that, when I came back to the States, I sat down with my PhD advisor and she was like, “Do you think you can go back? Because if you can't, we'll create a new research topic so that you can do a PhD without going to Russia.” If I had been in Moscow it would've been fine, but I do my research in a provincial city. I ended up finding cardiologists there and explaining my condition to them, [and having colleagues translate letters about my heart condition].

Doing the kind of research that historians do in archives in foreign countries, there's an ableist sort of thing about it. There's plenty of people who would like to be scholars who can't go abroad because they're handicapped. Even though I have this major condition, I had the privilege to be able to do this kind of stuff. There's plenty of people with CHD who are afraid to travel abroad. If you do your research and you talk to your doctors and you plan, you can go anywhere and do anything, depending on what your doctor's telling you. We don't have to let our conditions limit us as much as maybe it seems like it ought to.

Do you consider yourself disabled?

I would say no. That always comes up in job applications. Sometimes heart disease is on the list of disabilities. Technically I have this, but it feels weird to say. Probably that's connected to my childhood desire to be like everyone else. 

Could you talk more about how your parents dealt with your CHD? Are they still involved in your care now that you're an adult?

My mom was at probably every single appointment I ever had from birth through 18 and took incredible notes. She still has binders and binders and binders full of notes. 

Wow. Have you read them? 

I've looked at some of them, yeah. They're great notes. It's not just the medical stuff. Plenty of it is, “Johnny looked tense.” Plenty of doctors were probably annoyed because she had her binders of notes and would say, “They tried that last time and it didn't work.” If they tried to give me the cherry flavor Tylenol, I would throw up, but if they gave me the grape flavor I wouldn't. Every time they would be like, “Oh, the cherry's fine.” And my mom would be like, “It's not.” And then I'd throw up. 

My dad wasn't as involved. My dad is very sensitive to how I'm feeling. He has a good sense of people's moods and people's emotions. He didn't know the names of things, but he could tell if something was wrong. My mom always said, “When you were a little kid and we were trying to count your heartbeats, I couldn't do it, but your dad always could.” In my mind, my mom was the one at [every appointment], but clearly my dad did a lot of things that maybe weren't as visible to me as the kid.

To me it never seemed like either one of them was ever worried or pessimistic. They were always positive and happy and supportive. They wanted me to do whatever I wanted. They wanted me to play in my punk band with my friends when we were teens. They wanted me to go to Russia. They didn't want me to feel limited. 

Have you seen any benefits from having CHD?

For whatever reason, this was the person I was supposed to be. I had a friend in college who always called it a bum ticker. “Oh, you got a bum ticker.” It's such a funny phrase. It's something an old person would say.

Whoa. That's what I used to call my heart to my friends. That's so weird.

Ever since he said it to me—this was now more than 10 years ago—it's what me and my wife say when we're joking. “I got a bum ticker.” It's serious, but it's also kind of funny. It's been cool in a weird way learning all this medical stuff that no normal human being would ever have to know. I guess as much as I always wanted to be like everyone else as a kid, it's also kind of fun being a little different. 

The first time I went to Ukraine in 2012, I [had to see a physician to get a blood test].The physician comes in to talk to me. He says, “I see that you wrote down that you have this condition. I don't understand what that means.” And I was like, “I have a three chambered heart. I don't have a right ventricle.” And this guy was just like, “What? Can you draw a picture of your heart for me?” Maybe you've had this experience too. I'm sure a lot of us have where you get wheeled into the ER or you show up at the doctor's office and you are the most interesting person there. We are the most interesting patient a primary care doctor has. Always. And there's something kind of funny about that.

This interview has been condensed and edited.