I’ve been working full-time for a year in Dallas, and since I’m probably sticking around for a while it seemed like a good time to find a Cardiologist.

Wait, Johna, why do you need a cardiologist?

Well, dear reader, I have a condition called “dilated cardiomyopathy.” I was born with a hole in my heart and when I was three years old the doctors went to check on it and discovered the left side of my heart was kinda big, so it’s nothing particularly new. I had the same cardiologist for ~20 years until he retired (because doctors are people too) so in college I was kind of in limbo heart-doctor-wise because my family/medical records were all in Alaska while I was in Dallas/Moscow/Beijing.

So, like, what does that actually mean?

Dilated Cardiomyopathy is actually one of the most common types of cardiomyopathy (a heart disease) and can be caused by anything from alcoholism to cancer drugs to genetics – mine is in my genes and is also related to a much less common form of cardiomyopathy. It’s not a great thing to find in children because the prognosis is pretty grim (it ends up being something like a 50/50 survival rate to your pre-teens).

The human heart is supposed to look kind of like an American football, but mine looks more like a basketball because the left side is significantly enlarged. It’s kind of like a balloon that gets blown up just a tiny bit further every time, so the walls of the heart are thinner than normal and it doesn’t function at a normal capacity which can cause other weird problems (like blood cots or arrhythmias).

It also means that I can’t do stuff like go on roller-coasters, drink energy drinks (or live on coffee), have a biological kid, do competitive/high intensity sports or activities, smoke, pull a week of all-nighters, and generally I just shouldn’t stress my body out physically too much. Upside: I got out of every gym class ever while I was growing up and developed a healthy resistance to peer pressure.

I can do cardio as long as I’m not over-exerting myself, but usually I’ll just opt out of activities that are athletic and team-based.

Oh man, Johna, are you dying?

Technically speaking I have a version of heart failure, but since my heart’s been weird since I was born, my body has adjusted to it. I’m pretty asymptomatic (meaning that a lot of the time I don’t notice it) except that sometimes I get tired faster than I should or I need to sit down because my heart’s beating quickly.

I’ve been on all the right medication since I was three years old and my condition hasn’t changed a lot, so I’m pretty much doing a-okay. In high school my cardiologist thought I might need a heart transplant (not that anyone told me that), but my condition never worsened to that extent so I’m just gonna say: “Don’t worry, I’m fine.”

Okay, so if you’re fine, why are you bringing it up now?

There are two parts to this:

1. Being a kid with heart failure and being an adult with heart failure are two very different things. When you’re a kid you’ve got a better chance of being in uncharted territory medically speaking and people don’t really know what to do with you so there’s more of a “wait and see” mentality.

As an adult there are a lot more “concrete” solutions that become available because doctors have been studying adults in different capacities for friggin’ forever. This means that my new doctor has already started looking at fixes; a ‘fix’ when you have heart failure often involves some kind of minor surgery, and the decision process up to that point requires tests and research and a lot of thought. Some of this stuff I’ll be going through in the next 6 months or so would be way harder to not talk about (like, “hey, why are you suddenly like Iron Man with a flashing light on your chest?”). Yeah, I could wear bulky sweaters and go out of my way to hide it, or pretend I’m not stressed about managing work/life/health, but I’d rather just be comfortable talking about it without feeling like I have to start from ground zero every time.

2. As I started researching some of these “fixes” I realized that there isn’t a lot of easily available anecdotal information about people actually going through this whole process. There are a couple of forums that are hard to sort through, but besides that it’s a lot of documentation from the American Heart Association and other similar organizations that are very clinical (and it’s not like you just casually talk about this with people every day who also have the same problem). As someone who’s spent the past 20 years being “pretty much fine” it’s terrifying to think of life changing so drastically so quickly when I don’t feel like I’m getting any worse. I’d love to have a resource that someone can look at who’s in a similar situation and feel a little bit less alone.

I’d also love to try to make it somehow funny/enjoyable because this is my life and it’s weird but also great, so tell me if I’m just bumming you guys out.

TL;DR

I have always had a big heart, and I’m doing fine. Figuring out how to live with Dilated Cardiomyopathy as an adult is a totally different situation than having it as a kid: navigating insurance, big medical appointments/decisions, and work-life is something that you don’t really have to deal with when you’re still in school – it would be way harder for me to not talk about this stuff as it comes up.