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flapjacket-deactivated20130204 asked: I'll start off saying that you are beautiful! My momma is a cardiac nurse, and she's working with a brilliant little boy named Emmett right now. Are you ever getting a transplant? Have you ever used the Berlin Heart? I'm just curious. And you also have a brilliant taste in music, I must say.
Thank you! That is very kind of you to say.
I have never used an artificial heart, nor have I ever been a candidate for transplantation. Transplantation is considered in patients with my condition when they are in heart failure that is so severe it is unlikely the patient’s heart will recover, and/or when the malformations causing the decline in heart function are complex enough to be inoperable.
I did, however, have a valve transplant. My major surgery at 18 months included taking out the pulmonary valve I was born with and replacing it with a donor valve. My new valve, which I got two years ago, is porcine (pig tissue).
I get asked about transplantation a fair bit actually, which is funny to me because it’s never once in my life been mentioned to me by a doctor in the context of my care. It’s not really a common treatment for my condition. But the two heart surgeries people know about are bypass and transplantation. But the reality of heart disease, especially congenital heart disease, is a lot more complicated, and includes a common toolbox of medical procedures and surgeries that most people haven’t heard of. The heart is an incredibly complex organ, and there are a lot more ways to treat it than most people realize.
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byebyedollface asked: I just discovered your blog today, and I love it. I see a lot of myself in you. I, too, had open heart surgery and it sucked. I re blogged a photoset of you with those sticky things on/around your chest. It brought back memories of trying to get that adhesive off my skin. It was annoying as fuck (excuse my language). How has your experience with this shaped who you are? It did a lot for me, and it's nice to know someone who is going through a similar enough situation to where I can discuss it.
Thanks! I’m glad you like the blog and that my pictures resonated with you! I’m sorry to hear about your surgery—OHS is pretty rough going, psychologically speaking. Protip on the adhesive though: baby oil and a washcloth will take the residue right off. Should you ever be faced with stubborn electrodes again.
As for how it’s shaped who I am—that’s a difficult question, since my illness is embedded so deeply in my life. I’ve had it since birth, so even identifying that my experience is different from most people’s was a huge step. So there’s a sense in which doing a cause and effect thing is facetious; and equally facetious is an attempt to isolate areas of my life and say that my illness hasn’t influenced them.
That said, I can speak easily about what it means to me and the relationship I have with my illness and my illness experiences. I am deeply aware of my own mortality and my limitations, as well as my own capacities. I know my own strength. I understand intimately the tension between necessity and desire—that sometimes you don’t get to chose things, that your will is smaller than the world, and that maintaining identity in those situations is a matter of attitude and perspective rather than action.
I’ve never been able to chose the medical things that have been done to my body; though I consented, in technical terms, to my most recent surgery, it was a “surgery or death” situation. Hardly a meaningful choice. I submitted to it because I wanted to stay alive. And much of my surgery experience was just about staying alive, about making it through by whatever means necessary. But six months later when the dust settled and I felt safe again, I got a tattoo to commemorate the experience. That choice became a proxy for the earlier choice I was unable to make; I chose to integrate my experience into my sense of self and into my body and how to do it.
It really fucks up your sense of bodily safety and autonomy. In many ways that safety is an illusion (you could be hit by a bus tomorrow) but it’s also one of those psychological tricks we humans need to keep going, I think. For me, some of the biggest coping skills I needed to learn were the ability to identify the things that make me feel unsafe or violated, and to consciously enact my bodily autonomy. So, for example: I learned that strangers touching me makes me feel really anxious and dissociated; that exercise, which normally makes me really anxious, feels okay and even good if I do it in an environment over which I have a lot of control; that having the scar on my side touched feels really icky, no matter how light the contact. So I am now really good about setting and paying attention to these kinds of boundaries, and I am awesome at saying no. I enact my bodily autonomy in big visible ways by getting tattooed and by being very particular about how I present in the world. This is why femme is so important to me: it’s about enacting and owning vulnerability. I also do it in more internal ways, by making an effort to pay attention to my body’s cues and cravings. I needed to learn how to build a sense of physical security for myself and set strong boundaries around my body.
To circle back around to your original question: I think the way it’s shaped me, more than anything else, is that it has formed my ability to reach into my own seething mass of anxiety, vulnerability, and fear and let it talk to me.
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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?
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thenickmusicblog asked: I came across your post about your boot shaped heart. Sorry if that sounds insensitive, kinda hard to spell the actual medical term consistently. I'm a medical geek and future doctor. I've never seen anything like your condition. I don't know much about it and it sucks that you have it. I'm kinda interested in it. I know this is weird to have some stranger messaging you about it..but I kinda wanna learn about it. From you, if that wasn't a problem. If it is.. I understand and my apologies
Hey, cool, I’m happy to talk about this! I know there’s not a lot of patient writing on the internet about congenital heart disease. The actual medical term for what I have is tetralogy of fallot; “coeur en sabot” is a radiological term for the appearance of ToF on a chest x-ray. If you want a basic rundown of medical issues, this is a really good 101 page.
As for my condition specifically, well, what would you like to know? I’ve had three surgeries; one palliative procedure called a BT Shunt at a few months old, a total repair at 18 months and a pulmonary valve replacement in the summer of 2010. My medical history is pretty remarkable in that I’ve had relatively few surgeries. I’ve benefited extremely from medical advances that reduce the need for invasive surgery. I probably won’t ever need another open heart surgery, thanks to SCIENCE! This is due in no small part to the fact that I just so happened to grow up in a city with one of the leading congenital clinics in the world, and I am Canadian so I’ve never had to pay for my medical care. For this reason, I absolutely cannot engage in debates about the health care system; it’s just way to close for me.
As for it sucking. Well. I guess? Sometimes it does suck, but overall I have been extremely fortunate in my health. I have always received excellent care, and I have been straight-up lucky in that I’ve had relatively few complications. . We get along okay, and right now I have close to normal energy levels thanks to my new valve. I mean, it might be a case of “the devil you know,” but of all the health things one could have, this would be the one I would pick
Uh, I guess that’s kind of an overview? This can turn into the longest, most boring story ever, so if there’s something more specific you wanna know about, ask me.
