"I'm 29. I have to advocate for myself."

Jake Chico on the perils of transitioning from pediatric care, plus why he's "pretty lucky"

Jake as a kid

Hello! I’m Leigh Kamping-Carder, and this is The Heart Dialogues, the newsletter for people born with heart conditions (and the people who love them). Every other week, I bring you a candid conversation with someone who has congenital heart disease, plus occasional essays, links, recommendations and other good stuff about living with a wonky heart. Add your email to join this community and ensure you don’t miss the next edition.

If you’ve ever interacted with Jake Chico, you’ve probably encountered his sense of humor. He’s the one cracking sarcastic jokes on the Zoom hangout, leaving wry comments on Facebook posts or asking me if he can swear during our interview. It’s no surprise that, after I told him he could say whatever he wanted, he didn’t hold back.

Jake, now 29, was born with heterotaxy, a rare congenital condition where the organs in the chest and abdomen are formed differently, don’t form or appear in the wrong position. He has a CHD called double outlet right ventricle, where the heart's two major arteries both connect to the right ventricle, and asplenia, meaning he was born without a spleen.

As a kid, he skied and went on family trips to Disney World. When he was 11 years old, he underwent an open heart surgery and experienced a stroke during recovery. His life changed. He developed behavioral and learning issues, which he took out on his family. He struggled at a new school. But he managed to find help—a combination of a caring teacher, a good psychiatrist and the right medications. Today, he lives outside Philadelphia and spends time visiting family, hanging out with friends and participating in CHD communities online. 

Read on to hear about Jake’s experience facing heart failure and living on disability, how he transitioned from pediatric cardiology care, and why he considers himself “pretty lucky.” 

What was it like growing up with a heart condition?

I was probably a week, maybe two weeks [old], and I started turning blue. My parents were like, “Well, that's not good.” They took me to the emergency room. I was born in Albany, N.Y., and they didn't really know what to do exactly. I was shipped off to Boston Children's Hospital. My mom's [sister-in-law’s] dad was a cardiologist there, and so I got really lucky with that. I received all my care there. Honestly, my life was pretty normal. I couldn't play organized sports, and that really was my only—I don't even want to say limitation because as a kid, I didn't think it was a limitation. I just didn't participate in gym class. I was fine most of the time. My life was pretty normal.

Did you feel different from your peers?

Everything was fine until I was 10, 11 maybe. I had open heart surgery again when I was 11. I had a stroke in recovery. That is where my life changed. Everything was kind of crappy after that for a while. 

What changed?

My behavior changed pretty drastically. I turned into a pretty big asshole to my family, and I didn't know I was really doing these things. All of a sudden I was dealing with so many unknown issues, both at home and at school. At school, luckily it was just on the academics side. I wasn't being mean to people at school, at least I don't think I was. My grades started to go down. I was no longer able to pay attention. 

I had an aide through ninth grade. I went to a new school for high school. It was weird going from [a Catholic school I’d gone to my whole life] to a new place where I didn't know anyone. A lot of the people there had been [there since kindergarten], and I wasn't. I got in a fight with the person in charge of my stuff and I was like, I can't have him in ninth grade. I can't have this person following me around all day and in the classroom with me. There's got to be a way to try and get over the limitations that having had the stroke and the seizures put on me.

I got to have an extra resource period where I just got to work on my homework and have someone guiding me. That teacher is still a part of my life. She was probably one of the best things for me and really put me on the right track. 

Did you develop other hobbies or interests outside of sports? 

I was really into drawing and playing the drums before the stroke. I started to learn how to ski when I was 4, probably. To this day, I can't get myself to go skiing. I got to the top of the mountain with my family and I just froze. I couldn't go down it. Tubing on the back of a boat—I could do it, but I was like, “No, you have to slow down, slow down, slow down.” Where before I used to be, “Speed up, speed up, speed up.” My brain, just something's missing. Something freezes up.

Is that a psychological response or a physical thing that happened after the stroke?

It was a little bit of both. They put me on different medications, which sucked, before I finally landed on Concerta¹. That was a game changer. It got bad to the point where I would try to do physical harm to my parents or my siblings or cousins, all the while not really knowing why I'm doing these things, why I'm acting this way. I finally got to see a psychiatrist at a rehabilitation hospital. That guy was like, “No, Jake is having deficiencies and learning and behavioral stuff.” So that also helped me. I stopped having seizure activity by the time I was 17, I think. 

That all sounds so hard. 

It's weird to look back at it and be like, Wow, I did those things and I was a pretty horrible person. I'm 29, and I should probably be seeing a therapist. I've done it in the past, but it doesn't really go the way I want sometimes. My parents divorced when I was 19, and they're amicable with each other. It's fine. But you know, go to a therapist and sometimes they try to pinpoint my stuff on that. I'm like, No, my problems have nothing to do with my parents being not together. It's the heart and the brain stuff. Am I going to wake up tomorrow? kind of stuff.

Jake with his mom earlier this month

How do you think about all that these days? 

In 2017, 2018, I started having tachycardia² and other arrhythmias. I did not know I was having these issues. I never seem to know that I'm having issues. I kind of feel like that's not good. So they did an ablation,³ and I was in the cath lab a lot and started meeting with an electrophysiologist.⁴ I finally got a pacemaker in 2018. And I want to say at the six-month checkup, things were pretty good. And then that summer I started losing a lot of weight. I was having trouble sleeping, more so than the insomnia I already had. It got to a point where I was coughing a lot. I felt like crap. I was at work one day, in a group home for people with intellectual disabilities. I was friends with the nurse there. I sat down, I was like, “I can't breathe. I think something's wrong. Oh my God.” She and another coworker of mine were like, “You have to go home, go to the doctor.”

I went to my primary [doctor]. [He told my electrophysiologist,] “Jake came in, I can't find anything wrong, but something's definitely wrong with him.” I moved up my appointment [with my cardiologist in Boston]. Then my doctor came in, and she's like, “Okay, so you're in heart failure. It's not good, so we're going to admit you.” That's the first time I've actually been hospitalized as a surprise. 

I was in the hospital for two weeks maybe, and everything was pretty scary. They started talking about a transplant. I'm like, Ooh, that word's never been uttered in my whole entire life. And so they found out that because I was only paced on one side [of my heart], my right ventricle, which is already weaker, became even more weak. That is what put me into heart failure. They ended up just going back in there in the cath lab and pacing the other side. And they put me on Entresto⁵. They also were like, "We're going to send you to New York Presbyterian now because they're more equipped for adults."

I go there now. They're great. It's different. I'm used to going to Boston Children's my whole life, and [I was] kind of coddled there, which is nice. And then I'm like, Ooh, adult doctors, this is not fun. No, there's not really room for fun and joking. This is serious stuff. So that's been an adjustment. 

I found when I made the transition, they just didn't sugarcoat anything. “This could happen, and this could happen, and you need to watch out for this, and we're going to do this.” Was that your experience?

Yeah. I hate getting my blood drawn. I hate IVs and all that. Mostly because I've never had good experiences with it. And the worst thing that anyone can do is be like, “Oops, we missed the vein.” And they pull it out and have to do it again. And as soon as that happens, my mind just, even talking about it now, I might pass out on you. 

[The first time I got my blood drawn in New York], I had a stress test that day. For whatever reason, they told me I couldn't eat. And then they were like, “Oh yeah, we're going to take your blood now too.” I hate surprise blood draws. I need to prep myself for a week in advance. Then it was a long wait and I'm like, I'm really, really hungry. Damn. And then it didn't go well. The woman was like, “Do you have someone here with you?” I'm like, “Yeah, my dad.” She goes, “Should I go get him?” I'm like, “No, please, please, please don't.” It's embarrassing enough. I don't need you to go and bring my parent back here. I'm like 27, 28. I came out finally, looking like I went through a car wash. 

I mean, I'm 29. I have to advocate for myself. I've advocated for myself for a while, but my parents are always there as well. Now it's down in New York, it's with the doctor. It's like, “Jake, I'm here for you. This is about you. I'm only talking to you, I'm not talking to your parents.”

The hardest part recently and with my health is the transplant stuff. It's kind of been back and forth. The most mentally draining thing is, are we going to do this? Are we not going to do this? It's just like, please just say the answer once and let's just stick with that. 

You said that you're not working, and that has been difficult. Can you say more about that?

That's probably been the hardest thing is being on disability—for a multitude of reasons. One of them being, I feel like some people think I'm just coasting through life now. I get $1,300 a month, and I'm on food stamps. It's not easy. If I didn't have my parents, honestly, I'd probably be dead. My dad petitioned his insurance to let me be on it. I have an apartment right now because my mom gave me money. 

It's been hard relationship-wise. Especially now that I'm single. When you're trying to meet someone or talk to someone, it's like, well, I don't work. I'm not stupid. I know things. It’s a really hard thing for other people to get over is me having a heart condition, first. And then me not working, second. Thank God I'm not bedridden. I'm not walking around with oxygen. 

I have a few friends. To be honest, I'm not even sure if the people who I thought were my friends are my friends. At the end of the day, I don't really care. I like being by myself and just doing whatever I want to do. That's the blessing, I guess, of being on disability is I've been able to go and visit family and just kind of hang out. I'll go stay with my aunt, and I can just stay here for a month. 

Are there any benefits or positives you have seen in this whole journey? 

I am not negative. I'm really not negative at all. I'm pretty lucky that I am not someone who has a CHD that is constantly in the hospital or something's constantly wrong or something new is popping up. That's never really been my life, and I'm thankful for that. There's a lot of people out there, and it takes over their life. I had to deal with palliative care. [My end of life stuff has] been in order for a while. That stuff doesn't bother me. It certainly bothers my family to talk about, for obvious reasons, but I'm just like, well, I'm fine with it.

How did you get to the place where you are fine with that?

Honestly, I just think that it was just dealing with this stuff my whole life. I've always known this isn't going to get fixed. It's just, for the lack of a better term, slapping the Band-Aid on it forever, right? ’Cause there's no cure. It's serious, but it's not going to overtake me. 

Interview has been condensed and edited.

1. A medication for ADHD

2. A fast heart rate

3. A procedure that “uses heat or cold energy to create tiny scars in the heart to block irregular electrical signals and restore a typical heartbeat,” per Mayo Clinic.

4. A doctor who focuses on the heart’s electrical signals

5. A medication for chronic heart failure