I was born with two myocardial diseases that, although rare to coexist, are not impossible: Hypertrophic cardiomyopathy (HCM) and Restrictive cardiomyopathy (RCM).
The bad news is that HCM has a mortality rate of about ~1.0 per year1, and to add insult to injury, I was one of the few at risk of sudden death.
We discovered this during a routine medical appointment when my parents added me to a new health insurance at the age of five. To make it worse:
Unfortunately, compared to other pediatric cardiomyopathies, RCM is less amenable to medical or surgical treatment with higher mortality rates: 63% within 3 years of diagnosis and 75% within 6 years of diagnosis 2
So yeah, although nowadays we know much more about both diseases, at the time (~2003/2004) since they are congenital diseases and we had little knowledge about it and doctors basically said that I wasn't going to reach six years to my parents.
And my parents did a lot for me, they tried a lot of renowned clinics and doctors, and one even had the following dialogue with my mom:
D: Do you have any other children?
M: Yes, a newborn girl, why?
D: Well, you could get closer to her, enjoy time and dedicate yourself more to her [...]
It's not as absurd as when my mother tells this story, but basically, the doctor told her — without me in the room, since I was desperate and didn't want to hear that I'd probably have to take some blood tests, as always — that there was nothing to do regarding me and she would suffer less by accepting that I was going to die.
It's weird to put this out, since she just told me this much later. On that day, I just remembered that she was furious and told we weren't coming back there, which relieved me (no needles in my skin!)
Well, we didn't know back then, but the prognosis isn't this bad, since I was only going to start having some symptoms of the diseases two years later, at seven (~2005/2006).
At the same time, the hospital where I ended up having the reference treatment from my state was just starting to do pediatric heart transplantation, which was most likely what I eventually would need, but things weren't going well due to their inexperience. I was then redirected us to INCOR, the Latin America reference when talking about heart institutions (still is!).
Note that, after the unexpected recommendations to just give up in paid clinics and doctors, all the treatment I got was free, due to SUS3 (Brazil's publicly funded health care system). Since I was from Rio de Janeiro and INCOR is based in São Paulo, we couldn't afford the recurrence from appointments and exams completely, but thanks to Tratamento Fora do Domicílio4 (TFD, stands for "Treatment Outside Home"), they reimbursed our (patient + one companion, my mother) daily expenses for food and transportation.
I won't go into much detail regarding the bureaucracy, but it requires a lot of authorizations and accountability — one can't just spend R$ 100,00 on Big Macs and ask for a government refund.
Biopsies, catheterizations, ECG, imaging tests... you name it. I had access to it, and if you're reading this now, it's thanks to that. I know it has flaws, but for each person who has a bad story to tell about the public health systems, I know hundreds of people, by name, who are still here or were for longer than they could be thanks to it.
I never stopped going to school in the meantime, and since any physical activity left me blue and breathless, my family got me a laptop, and this computer became my best friend.
I was chronically online before this term was coined. I learned English by myself, played many hours of Ragnarok Online, started making games with Flash, RPG Maker, participated in Forums.
I once went by KamauX, Lucky, Flocky, xX Lucas Xx, DFox, Yoroy. I had a bunch of names over these years because every now and then some would look dull, and I wanted a cooler one. Unfortunately, being gifted didn't make me smart enough to save more of my online presence before 2011, so most of it is just pieces of memories in my head.
Heck! Ten years ago — before a transphobe writer ruined it for me — I had a RPG Maker XP MMORPG about Wizards and Magic schools! This is so cool to think about in retrospect.
Today, as you might have figured out up to this point, I work as a Software Engineer. What a cool name. I actually always loved programming, and this made it hard for me to switch my mind to see it as a career as well. I didn't know we could have great salaries until I did.
This made me undervalued and overworked for some time, since I had a lot of baggage but little experience, and it was enough to put me in the beginner box. Not that I'm totally against it; actually, this helped me gain more maturity and understand that I knew nothing — still don't —, in fact, I'm what people call today a "lifelong learner."
You might be wondering what this small timeline has to do with my health. And to be honest, I'm a bit confused as well; I got carried away and liked it.
I was thinking earlier (as I always do; anyone who knows me personally has already listened to this take), how weird it is to live with an expiration date. I never imagined myself getting to 15, 18, getting laid, then it came the 20s... now I'm closer to my early 30s than my 20s.
And still, I can't imagine how my life will be at, let's say, 35. Because I don't even believe I'll be here.
I know, dear reader, you (or I) can just get hit by a bus and die while being perfectly healthy. I assure you it's not the same thing. I don't spend my whole day thinking I'm going to die. The fact is that I don't have an expiration date anymore.
Back in 2011, I got a heart transplantation after just two and a half months on the queue, at age around mid-12. It was easier at the time since I was tall enough to get an adult heart (something that's not really usual, it seems).
In fact, I was the 100th pediatric hearth transplant of INCOR, I was on some journals and even on TV5
So, I don't see my life as either a half-full or half-empty glass of water. A lot of things went right, a lot of things went wrong. The "post-transplantation" isn't the easiest thing in the world; I keep having to go several times a year for a bunch of exams. At the end of last year, I even got a pacemaker implant, so... This journey isn't done after the surgery.
Don't get me wrong, a lot of things I experienced won't be experienced by some people, and some I won't ever myself, even by choice! So it's not just complaints for the sake of complaints.
I guess, in the end, it's just weird. Some people think it's immediacy, but for instance... This year I went out of South America for the first time. It was simply amazing ✨
Now, while previously I had no "goal" in my life, I have the goal of going to live in Europe. Maybe it won't work out, maybe after a year or two, I'll want to return.
Maybe don't. Maybe I don't even get to move, just because I changed my mind. ¯\_(ツ)_/¯
Oh, and just in case you're reading this, mom: Mario Bros6