thenickmusicblog asked: Thanks for the rundown and the websites... I definitely plan on reading about it! I forgot to mention I've been working in a hospital for a couple years. I was really interested in your surgeries and how it came about that you had tetralogy of fallot. Anything like that.
Content warning for talking’ bout medical shit and surgery and stuff. It’s not graphic, but if you’re sensitive to that kind of thing this might not be the post for you!
I was born with my condition! The causes of tetralogy aren’t terribly well understood right now. The official line is that it’s “multifactorial,” which I gather is medicalese for “fuck if we know.” There is possibly a genetic component—my parents had a child before me with ToF (who died of it). My clinic, a few years back, finally got a genetic study of severe congenital malformations underway. So we’ll see what that turns up.
As for the surgeries, well. I don’t remember the first two, obviously, as I was an infant. The first one, the BT shunt, was a palliative procedure designed to keep me alive until I was big enough to get a full repair. Due to that surgery I have a really nasty twisted scar that runs from the middle of my back to the edge of my right breast. It healed really poorly and sometimes it still gives me grief. That surgery also injured one of the nerves to my larynx—meaning that only half my vocal chords work. As a result my voice is pretty soft and sounds kind of hoarse and breathy. People ask me if I have a cold a lot, which is generally well meaning but at this point super annoying. NO GO AWAY.
My repair happened at 18 months; it was a two day surgery where lots of complex medical things happened that I don’t fully understand. Congenital repairs on infant hearts is some tricky shit—it’s complex, delicate work on a teensy little surface area. I had kind of a rough time of it, recovery-wise: I was in icu for six weeks, spent some time in organ failure, technically have some brain damage. You know how it is. As a result of that my scar is really unique—I have these indentations all along it that look like leaves. I’ve actually had people ask me if it’s scarification or a brand or whatever.
My most recent one was significantly less eventful. They were replacing my pulmonary valve—which was supposed to last like seven years and ended up lasting almost twenty. I don’t remember it all that well tbh. I had a case of “postperifusion syndrome” (basically, brain fog due to bypass) that felt really severe at the time. I recovered fully, but WOW did that suck. I was really dumb and couldn’t like, read a book or follow a conversation or anything. I stared into space a lot and went a little crazy in my hospital room. Weirdly, I also had pretty bad insomnia for about two weeks following the surgery, and I have never before in my life had insomnia. The physical recovery wasn’t that bad—the shitty part of recovering from surgery is repairing and strengthening the muscles. Open heart surgery, even though it’s obviously really invasive, doesn’t actually cut through much muscle. My intercostals and upper abdominals were a bit sore, but after the first week or so I was off painkillers completely. My chest was obviously really tender and I was a slow moving, lumbering husk for about a month. But I bounced back really quick; I think I went out drinking like two and a half months after because I make good decisions. I pushed myself too hard to recover quickly, because obviously being incapacitated and in pain sucks. If I had to do it again I would be gentler and more patient with myself and wayyyy more demanding of the people around me. We all wanted me to be fine so badly that there wasn’t a lot of room for me to process my not-fine feelings. But I mean overall it went really smoothly and my care was great. Every time I go to the gym now I am full of wonder, amazement and appreciation of me and my body, not only for my improved cardiovascular function (which is sweet) but for my stubborn resilience.
I told you this was a really long, really boring story! I hope that’s what you were asking about?