What It Was Like To Unexpectedly Get Open Heart Surgery At 21
In late May 2018, about two weeks after my 21st birthday, I got news that changed my life: I urgently needed open heart surgery. On July 2nd, I woke up in the ICU on a ventilator with a broken sternum, my aortic aneurysm grafted in plastic, a titanium valve clicking away in place of my bicuspid aortic valve. Now, nearly three years later, I’m just beginning to accept the impact that July 2nd, 2018 had on me — the gifts, the curses, the blessings, the frustrations, and the ever-present sound of my mechanical heartbeat. Here’s what it was like to get open heart surgery as a 21-year-old trauma survivor who ran from their medical issues until it wasn’t an option — and what it’s been like to build a new life ever since I got dragged kicking and screaming back to the Medical Mystery Playground.
The Before
I was born with a congenital heart defect — a bicuspid aortic valve — and had yearly cardiologist appointments to check on it. I was always told that I’d need to get the valve replaced in my 40s or 50s. When I was 13, doctors discovered I had developed a small aortic aneurysm on my ascending aorta. We watched it carefully after that, but it never moved — staying nearly a centimeter below the surgery threshold, which is about double the size of your aorta’s smallest point. As far as I was concerned, heart surgery was such a long time away that it almost seemed unreal.
I had spent years terribly sick as a young teen. I had dozens of heart palpitations a week. My heart rate, blood pressure, and even my oxygenation varied rapidly, and I struggled to regulate temperature. I got a dysautonomia diagnosis, and eventually was given some treatment guidelines at the Mayo Clinic that helped me combat the symptoms of it. By age 16, the symptoms had almost completely faded, or at least become so manageable that they were invisible to everyone but me.
I spent the next five years dealing with other trauma, so when it came to my medical issues, I scoffed at them. The denial, dissociation, and escapism impulses were strong. I went fully in the direction of “I’m invincible, I’m not sick anymore, and I’ll do whatever I want with my body just to spite the fact that I was sick in the first place.” Hard drugs, no exercise, and a general disregard for treating my body in any way that didn’t encapsulate “a fast moving trash can filled with glitter and bad decisions.” It probably doesn’t surprise you to hear that petulant strategy was unsustainable. I became gravely ill. I had developed a rare pre-cancerous tumor called an appendiceal mucocele and ended up getting my appendix and cecum removed. I had a large hiatal hernia on top of an h. Pylori infection.
After the treatment for h. Pylori, my symptoms improved greatly. I was really just a regular-ish 21 year old. (A 21 year old who had an ACE score of 9, had lived on their own since 16, and who had graduated from college a few days after they turned 18 — so, kinda regular?) I went out with friends, cried during Avengers: Infinity War and subsequently got a Gamora quote tattooed on my arm, and fell in love with my work as an LGBTQ+ organizer. I landed in the ER in late May because I started having sudden sharp upper abdominal pain, which I was told to watch out for as a sign something had gone wrong with my hiatal hernia that we were planning on surgically resolving.
It makes me cringe in hindsight that I argued with an ER doctor who wanted to check on my aortic aneurysm. It wasn’t necessarily related, and my yearly echocardiogram was due in September, so why bother with a CT scan and dreaded contrast dye right now? He pointed out that a lot of other things seemed to be accelerating in my body since the last echo, particularly in regards to connective tissue — the mucocele tumor, the hiatal hernia. Reluctantly, I let him do the CT scan. The aneurysm had grown significantly and rapidly, hitting the surgical threshold. He called cardiothoracic surgery.
A week later, I scheduled the surgery for July 2nd. We would have to replace my aortic valve at the same time, and to avoid guaranteeing myself another heart surgery, I chose the mechanical valve. Some people, especially patients who happen to have a uterus, agonize over this decision. It’s a weird time of your life to need a heart valve replacement, because presumably, if you’re in your 20s-30s, you’ll live five or six more decades. Tissue valves generally last about a decade in younger patients; mechanical valves last forever but require you to take blood thinners, which is not only annoying but also prevents you from carrying a biological pregnancy. This was an easy choice for me, which I’m grateful for. I never wanted biological kids and I didn’t want a second open heart surgery — I would rather get used to the blood thinners promptly. It took me less than three seconds to make up my mind. But as I tell other OHS patients, there is no wrong choice when you’re choosing from shitty options.
After it was scheduled, I didn’t really have time to prepare. Thinking that you have three decades to prepare yourself for something and then finding out you only have a little over a month is quite jarring, especially when that month is already completely booked schedule-wise. I was working long hours and traveling to events across the state, doing advocacy days, going to mixers, and leading a youth contingent for one of our largest Pride events. I wrote my medical directive, will, and power-of-attorney forms on a rarely-free Saturday at a friend’s place over whiskey and morbid jokes. You’re encouraged to prepare these forms just in case. I thought about what I would want my funeral to look like. In addition to my other various wishes, I wanted an exchange from Agents of SHIELD (yes, really) read in the event of my death. It was giving me great comfort in the countdown towards “your heart is getting stopped today,” and I hoped that it would give my loved ones comfort in the event of my death.
One of the last events I worked before surgery was San Francisco Pride. I had fun. I worked at my nonprofit’s festival booth with beloved coworkers and fellow organizers, distributing condoms, lube, prizes, and advocacy information. I drank and danced with strangers. I got on Tinder and summoned a guy to my hotel room. He called me a “perfect 10” and texted me a few days later to wish me luck on my surgery, which makes him officially the nicest one night stand I’ve ever had. In short, it was a hilariously millennial way to spend what could be my last days.
But there were dark moments. Someone in my life at the time quipped that my aneurysm had grown “because of all the drugs you’ve done,” a belief that burrowed deep into my brain and gave me years worth of animosity towards myself, my body, and the surgery. When I showed up to the pre-op testing appointment, where I’d get a bunch of blood drawn and a nurse would walk me through the surgery and the aftermath, the ICU nurse was horrified that I had shown up alone. That confused me. It was just a pre-op appointment, right? I was still so ignorant of what a big deal this was. For me, it felt like just another medical thing. I was honestly fine until she got to the part about how I would wake up still on the ventilator, with my arms tied down, and I began to panic. I asked her if there was any possible way they could keep me asleep until it was out. I explained that I was a rape survivor, and that during the most violent incident, my attacker had forced me to give him oral sex. Waking up astoundingly disoriented, in pain, tied down, with something down my throat — that sounded utterly terrifying. I tried not to let my breath hitch. She dropped her voice and said “oh, honey, I am so so sorry,” which made it even harder to stay composed. It’s not that I don’t appreciate sympathy, it’s that it doesn’t solve the problem. There was nothing she could do. Full speed ahead.
Later that night, I told someone close to me about it and broke down sobbing about the terror of waking up from having my heart stopped and immediately being dramatically triggered. I talked about my fear of the weakness, of how I wasn’t supposed to drive for 4–6 weeks, wasn’t allowed to raise my arms above my shoulders, and was supposed to take a significant amount of time off work. The phone call wasn’t exactly reassuring. “But you had that surgery with your appendix getting taken out earlier this year and they said you’d be tired and it would take weeks to recover, and you were completely fine.” This was at the core of the mythology that was about to spectacularly fail me: that I’m the “Perfect Patient,” that I can handle anything thrown my way, that nothing is as hard as it sounds, that I can and should just shake it off.
Last year, I named my disability-activism centered Instagram account Manic Pixie Sick Girl as a satire of that exact mythology. For all the moments I spent wistfully telling friends and dates about my health problems, but powering through them to the sounds of cheers and applause. For when I showed my 7th grade crush how the portable heart monitor strapped to my chest worked. For all the times I’ve made nurses bend over laughing while I’m hooked up to machines. For the mythical energy of that mysterious, messy, tragic femme figure — broken but not too broken, disabled enough to check a box but ew, don’t be really sick. It’s satire to me now, but back in 2018, I would’ve taken those tropes at face value.
The day before surgery, I meal-prepped with friends. We made cookies and sat on the couch. We fell asleep to some Marvel movie, and then, at 3am, I rose, took my anti-bacterial soap shower, and snuggled my cat. By 4:30am, we were in the car, driving down the nearly-deserted Highway 50 through Sacramento. I could see the tower of the hospital a few miles ahead.
I got checked in, got IVs placed, including an arterial IV in my wrist. If you’ve never had to get an arterial IV before, it’s a big ass needle and they have to ultrasound you while they’re putting it in. I’m not even scared of needles, but that was a nasty one. Two of my friends were outside the curtain, too squeamish to look, but I heard one of them say “she’s laughing, so you know it’s really bad.”
A chaplain came in and asked me if I was religious and if we’d like to pray. It was surreal to me. I’ve had lots of procedures and surgeries and chaplains never came in before. I was raised Catholic but am some weird agnostic-Pagan-Universalist type nowadays. I do believe in the divine. I do believe in something out there, listening to us, guiding us, helping us. I blurted out “yes” and my friends joined in as the chaplain led us in prayer.
Seemingly just moments after, a crowd of people came to wheel me down to the OR. I’m used to being the Medical Mystery Case and having a lot of doctors around for my procedures, but this seemed excessive. They started sedating me in the hallway. I remember feeling warm and at peace. I didn’t have to say anything or impress anyone or make somebody feel better about what was happening to me. I don’t even remember the OR. I just fell asleep, floating comfortably away to wherever it is you go during heart surgery.
The After
When I jolted awake, I noticed two things. One, my surgeon, sitting in a chair in the doorway, reading a magazine, waiting for me to wake up. Two — the ventilator. The ventilator was every bit as bad as I had been afraid it would be, a memory that was viscerally stuck in my head nearly all of 2020 as COVID made the term seared into our collective thought process. I was trying to sign to my nurses, trying to write on a piece of paper. My limbs felt heavy and jerky. My brain felt like I had rebooted it in Recovery Mode, and most of the features were missing or disabled. I started crying and choking on the tube in my throat. My surgeon had them take it out. My exceptionally stubborn ass, still drugged beyond comparison and with a brain and body that had just been through one of the most traumatic experiences a human body can tolerate, triumphantly posted on Facebook. “I survived getting my chest cracked open, my heart stopped, and my valve replaced just to spite my enemies.”
My initial recovery after surgery only bolstered the myth of the Perfect Patient. I was discharged directly from the ICU four days after surgery instead of having to go to a step-down unit, which was apparently some kind of record. I didn’t have to get a pacemaker. My pain was surprisingly well under control. I was able to climb the stairs just a day after I woke up. My surgeon actually called me “miraculous.” Get out of here, one of the nurses lovingly wrote on my heart pillow — a dense pillow that you hold against your sternum when you sneeze or cough, kind of like the heart-surgery-equivalent of a cast.
After that, the road was bumpy. It was a combination of my unusual circumstances (being on my own, only with the help of a couple friends) and my own personal arrogance that made it so bad. Sternum restrictions? Who needs them, I’m not in pain. I can reach the high shelf. I can turn that steering wheel. Neurological and emotional side effects? Nah, I’m completely fine. I can go out with friends and keep up with their partying. I can make major life decisions. I’m miraculous, remember? The defier of expectations and odds?
I paid the price for that. I have lasting nerve damage — costochondritis as well as some nerve damage in my arm. It flares up occasionally throughout the year. I manage it the best I can, but it’s undoubtedly frustrating. People can get nerve damage from OHS even if they perfectly follow their restrictions and instructions. But I know I didn’t, and I know that after breaking them for a few days, it was exactly this kind of pain that landed me back in the ER a few weeks after surgery.
I struggled with anxiety, mood swings, trauma flares. It took me about six weeks to finally start settling in, but I didn’t really feel the emotional gravity until two and a half months later. I asked my boss if I could go home early on a Friday in September because I had a terrible ocular migraine. Frustrated, I told him that they had become incredibly common after heart surgery — some kind of neurological damage as part of “Pumphead,” the colloquial term for neurological and emotional issues caused by the heart-lung bypass machine. “It turns out that dying has some side effects,” my boss quipped. I went home and wept. That simple remark was the last straw, the thing that accidentally made me finally accept the emotional, physical, and spiritual reality of what had happened to me.
Is it dying? I’m not sure I’d call it that. But when your heart is stopped and your body is cooled and a machine is pumping your blood, what state are you in? Can you call it unconsciousness if you would not wake up on your own? Can you call it living if a machine is doing it for you? A near-death experience would be the closest terminology we have for it psychologically and biologically. Open heart surgery is one of the most ambitious medical procedures known to man. It is stunning, and it’s also profoundly unnatural.
From then on out, I resolved to listen more to my body, to strive for health, and to accept limitations and boundaries. I promised that I would reject the idea of being the Wonder-Woman-esque mythological “Perfect Patient.” Yes, I am talented at adapting to strange and awful medical circumstances. Yes, I am incredibly resilient. But I’m also human. Fragile. I am allowed to have good days and bad days. I am allowed to not be able to do it all on my own. I am allowed to not be the hero, the warrior, the fearless champion, the Perfect Patient, the Manic Pixie Sick Girl.
As I healed, other things changed too. Open heart surgery scars are not exactly subtle, and because of my connective tissue disorder, my scar didn’t heal “normally.” It became a bright pinkish-purple keloid, all ten inches of it right down the middle of my chest, despite steroid injections to flatten it out. (Shoutout to my surgeon for cutting really straight, though!) It became the first time that people saw me as visibly disabled, and I was shocked at how quickly the sexualization and fetishization started. Older men would come up to me in the store and ask me a ton of invasive interpersonal questions — oh, my brother-in-law/golf buddy/bar friend had open heart surgery, let me tell you all about it. Worse, men would try to touch me — they’d put their hand on my chest, as if the conversation about heart surgery changed the fact that my boobs are off limits. Once, I was checking out at a store and the clerk nodded at my scar, asking me “what happened — did you get your oil changed?”
(In fairness, I did actually laugh at that, and I occasionally steal that line when people come up and ask me about the scar. Oil change, bar fight, shark attack — I say a lot of shit!)
There were other weird and fun things about my healing, things that would probably be different for the average (much older, presumably married/partnered) person who goes through OHS. I was terrified of having sex — seriously. I thought that the sound of my mechanical heart valve, which makes a ticking noise, would annoy whoever I was in bed with. I couldn’t imagine the humiliation if they made some testy remark about it. This turned out to be an irrational fear. Every person I’ve slept with since surgery either hasn’t commented on it at all or has commented on it affectionately. I had a few mishaps adjusting to life on blood thinners, because my blood has to be artificially thinned to 2–3 times that of a normal person’s to make sure that the titanium valve doesn’t throw a clot. There are lots of things that impact your blood thinness in your diet — alcohol makes your blood thinner, so does turmeric and CBD, while vitamin-K heavy things like spinach or kale lower it. You learn how to balance out your diet with practice, but it was a learning curve at first.
I remember the first time I went on Lovenox injections, a temporary measure that’s required when your INR is too low. A friend took me out to dinner before we picked up the injections at the pharmacy. I took a tequila shot before I stabbed myself in the abdomen. A few weeks later, after the injections were done, I was stoned at 2am making a post-midnight snack and accidentally cut my finger with a knife. Blood went everywhere. In classic stoner fashion, my thought process went: damn, dude, that’s a lot of blood. Wait, shit, that’s my blood! I was spared the embarrassment of literally having to call an ambulance for a midnight-snack-mishap because I had purchased Wound Seal (a hemostatic agent powder that stops bleeding) and stashed it in a bathroom drawer. I poured that on, wrapped it up, and got two stitches the next day and a compliment from the doctor about how well I had handled it. I am an embarrassingly clumsy person, so cuts and bruises do happen, but I’ve since instituted the rule of No Sharp Things Near My Hands When I’m Impaired and avoided any more exceptionally bloody accidents.
Happily Ever After
Even with a commitment to maybe chill out and listen to my body more, I tried to get back to “normal,” still unaware that the “normal” I was searching for did not exist anymore. I hid my heart pillow in the back of my closet. The signatures and kind notes on it seemed like they were meant for someone else. I blew off my cardiologist. There was so much other shit happening in my life and as time went on and months ticked by and turned into years, I became incredibly ashamed and paranoid that I hadn’t followed up on regular testing. I was even skipping echocardiograms. In true ADHD fashion, since I had been unable to do The Task right away and had let it languish, I was too embarrassed/scared/Executive-Dysfunction-Paralyzed to call them and say “hey, remember me? You know how I had OHS two years ago? I haven’t gotten any imaging and need to schedule my echocardiogram.” Plus, I became terrified that something was wrong. If something was wrong with the valve and I had let it get even worse because of my own negligence, I would not be able to live with myself. I still had the it’s because of all the drugs you’ve done comment ringing in my ears about the surgery.
It wasn’t until August of last year that I confessed that I had blown off cardiology. My psychiatrist asked about it in regards to a medication change, and I mumbled out some uhmmm I’m actually in between cardiologists right now bullshit and was immediately mortified with myself after the appointment. I messaged my doctor, told him I had lied, and blurted out the truth. He reached out to my primary and had her rewrite the referral so I wouldn’t have to deal with that step, which was a monumentally helpful and touching gesture.
We went through the timeline of my Party Girl Days to try and work out the stigma and shame of feeling like it was “my fault.” I had, to be fair, done a lot of drugs during the height of my trauma-induced breakdowns in the years prior to surgery. But as we searched, the timeline didn’t match up. The aneurysm hadn’t moved at all until sometime between September 2017 and May 2018. I hadn’t done an insignificant amount of drugs before September 2017 — my Era of Child Prodigy Turns Into A Disaster started in August 2015. If my old drug use had messed up my aneurysm, it would’ve shown at least some change far before September 2017. More likely, it’s the result of a particular genetic disorder characteristic. I’m in the diagnostic weird in-between — I clearly have a connective tissue disorder, but “unspecified” sits on my file. I get updated genetic panels every year as more and more genes get added to them. I do specifically have a lot of characteristics of Loeys-Dietz Syndrome, which, funny enough, has the unique attribute of a pattern of aortic aneurysms growing quickly after years of stability.
Maybe I was genetically predisposed to it. Maybe it’s just bad luck. I let go of the self-blame and a weight came off my shoulders. I went to get my first post-surgery echocardiogram in August 2020. Echocardiograms are ultrasounds of your heart, always done in a darkened room. You can see your heart on the screen. You can hear the whoosh of blood. For someone who will never have biological children (and didn’t want them in the first place), that experience was as close as I can get to imagining how expectant parents feel when they see an ultrasound for the first time. I was in awe. It felt magical. I felt so weirdly proud and affectionate towards my heart. I truly could’ve laid there with an ultrasound probe jabbing me in the boob forever.
I got the all-clear from cardiology just a few days later. Everything was completely fine. Two years of fear and animosity faded away. In the early months of this year, I began restoring my heart pillow a bit. Some of the signatures had smeared when I fell asleep on it in 2018 with wet hair. I looked at old photos and reconstructed them. I drew designs and doodles on it, clouds and swirls hanging around the signatures. Those signatures, the kind words, the compassion — they all felt like they were meant for me now.
I got one final signature on the pillow. I was able to get my COVID vaccine in March because of my high-risk medical status. I brought my heart pillow with me to the drive-through site, along with a sharpie. When I arrived to check in, the woman asked me what my profession was. I said something utterly disjointed like “I’m here for the high-risk thing” and just pointed at my scar, since my brain had decided that it couldn’t form the right words. She laughed. “Oh, yeah, go ahead.”
When I rolled down the window to get my shot, I told the nurse about my heart pillow and asked if she would sign it. She was clearly thrilled about it, which really made my day. She wrote a lovely note to me, gave me my first Pfizer injection dose, and sent me on my way. The signatures on the pillow represent a miracle, a period of people working hard to save my life, and surviving the pandemic and getting that first shot seemed like it so neatly sewed up that chapter. Miraculous, like my surgeon said.
The heart pillow now sits on a prominent shelf in my closet, no longer relegated to the back. I am not scared of occasional Lovenox injections anymore — I don’t have to hyperventilate and shoot tequila to amp myself up for them. I’ve met friends through online open heart surgery groups, which is a welcome development — there aren’t a lot of 20-or-30-somethings who deal with this, so being able to vent and connect is a wonderful blessing. I have become relentlessly dedicated to the pursuit of universal healthcare — I know that if I didn’t have great health insurance, this story would’ve turned out very differently, and paying for treatment or lifelong maintenance should never be something a patient has to worry about in this situation. I hope to use my story and my experience to reach people who might’ve never thought of it in that light.
I have also started to trust myself again. Recently, I jumped from rock to rock in the water of a mountain creek, confident in my balance, knowing that if I did slip, it would only be a few feet, and that would be okay too, remedied by bruise creams and hemostatic agents. I fall asleep lulled by the sound of my heart valve. I set boundaries when something flares and I can’t handle it. I’m not afraid to say when I’m struggling. I refuse to break my back in pursuit of the elusive Perfect Patient status. I listen to my body, and it has quite a lot to say. As my 3 year surgery anniversary approaches, I feel grateful for all of the days this valve has given me already — the good ones, bad ones, messy ones, and broken ones alike. Telling this story in its wholeness is my anniversary present to myself, a way of putting my scar into words. With a little luck, I will eventually watch those 3 years turn into 50.
