“So, you were born blue?”
These were the first words I heard when I met my cardiologist last August. Less a question than a gentle statement of fact, the sentence revealed three decades of history in a heartbeat.
I was born with a rare condition called Tetralogy of Fallot with Pulmonary Atresia. It’s a life-threatening combination of five abnormalities within the heart that makes it difficult for blood to circulate throughout the body. You may have heard of it because of Billy, Jimmy’s son.
Tetralogy of Fallot (TOF), a broader category of my specific diagnosis, accounts for just a fraction of the 1% of children born in the U.S. with congenital heart issues each year. The CDC estimates it to be around 1,660 newborns — 0.04% of all domestic births.
Two months ago, I had open-heart surgery for the third time in 32 years.
I’m still working on my elevator pitch for acquaintances and extended family, but thankfully everything went well. I’m feeling stronger every day and hope to start jogging in cardiac rehab by the end of the month. If all goes to plan (Covid-19 willing), I’ll be back scoring goals with my rec soccer team come summertime.
The director’s cut is a little more gruesome and truthful. It starts by acknowledging that I’m alive today by a miracle of faith and science.
In early December, a team of surgeons broke my sternum, opened my chest, and replaced my aortic and pulmonary heart valves in an intense all-day mission. To have the time and space needed to operate, they contorted my torso like a Cirque du Soleil performer while dropping my body temperature to a state resembling hypothermia. I was placed on life support so my heart could stop beating. Though there were a handful of surprises, the surgery was a complete success.
I woke up in a dry hospital gown 15 hours later, unable to speak yet aware of the beeping monitors around me and the brightness of the room.
Clenching my side, I felt the chest tubes — flexible conduits used to drain excess bodily fluids — that wrapped around my lungs and ribs like coiled bike locks every time I moved.
In the corner, I could hear a muted negotiation between my mom, who was squeezing the final minutes out of her allotted visitation time, and the CICU nurse. Because of Covid-19 protocols, this was the last time we’d be in the same room together until the doctors sent me home.
“We’ll check again with the anesthetist in 15 minutes… He needs to be alert before we remove it.”
On the count of three, the intubation tube came out like a magician’s handkerchief covered in slime. Adrenaline pumping, I found my breath and begged for water.
Nurses gave me Fentanyl and Ketamine instead.
Drinking more than a few sips of water immediately after surgery can cause fluid to enter the lungs as well as vomiting, so it’s rationed like a narcotic. Worse still, the lingering anesthesia acts as a chemical drying agent for the entire digestive tract, which renders any attempt to quench your thirst futile. Every heart patient will tell you this.
I fell asleep aching and uncertain of time but knowing I had made it to the other side. Less than 24 hours later, I was sitting in a recliner slurping Italian ice freeze pops fresh off a walk around the cardiac recovery ward.
By the end of the week, I was home.
No Pandemic, No Party
It’s reasonable to ask why anyone would choose to have heart surgery in the middle of a global pandemic.
Unfortunately, my comrades in cardiac rehab offer proof that surgery is frequently an emergency intervention and not a choice at all. If you’re lucky enough to know you’re due for maintenance, it’s best to move early — infectious diseases be damned.
Ever since I was a child, I’ve visited the hospital at least once a year for a battery of MRIs, EKGs, and echocardiograms to track my condition. My “checkup,” as we’d call it.
I can picture the chairs in the waiting room and the twinge in my nose when the Siemens MRI machine starts to whirl. I can feel the echo transducer press against my skin and see the technicolor monitor as it hisses and thumps in the background. I know where I’ll look when the needle pokes for blood work and where I’ll stop for lunch when the day is done.
Regrettably, this familiarity with hospitals left me bordering on dismissive on more than one occasion when friends faced minor outpatient surgery or a trip to the ER.
“Oh, that’s all? You’ll be fine.”
After each visit, my cardiologist would tell me how the bovine pulmonary heart valve they installed when I was 14 was holding up.
“Your numbers look steady,” they’d say. “But try to eat more vegetables.”
The honeymoon lasted nearly 15 years, allowing me to get through college and early adulthood with few limitations other than having to explain my scar.
But about 18 months ago, things started to change. My feet began to swell in the early evening. Atrial flutter beats grabbed my attention in unsuspecting, quiet moments, and my cardiovascular endurance went into free fall.
One Sunday morning, I subbed myself out of a soccer game seconds before kickoff. Retreating to the sideline, I sat knees-to-chest on the artificial turf as my vision blurred.
Soon the numbers confirmed what I suspected. My cardiac regurgitation and dilation metrics had shifted from mild to moderate to severe. A stress test eventually showed that my heart and lungs were functioning at only 70% of their expected capacity, even when accounting for my condition.
The irony of having open-heart surgery as an otherwise healthy adult is that you have to trust you’ll feel better after the bus hits you. All the while, you stand in traffic waiting for it to come.
The weeks leading up to my operation were filled with half-scribbled index cards, hand sanitizer, and hospital hold music. Covid-19 infection rates were at an all-time high in late November, and I worried every day I’d get a call notifying me that the procedure needed to be postponed or canceled.
It was exhausting and immensely frustrating at times. Simple activities like going for a walk or stopping at the grocery store turned into combat missions.
There’s no easy way to say, “please keep your distance… I’ve got a heart condition… you could derail a year of preparation and put me in grave danger by getting too close…” while passing someone going the wrong way down the cereal aisle or smoking a cigarette at the bus stop.
Despite stellar resources to help plan for surgery and a deep support network, my Google search history overflowed with warm and fuzzy queries like, “can you wipe your butt after heart surgery?” and “pandemic will notarization.”
Some things you just need to know.
Over Zoom, the surgeon who’d soon take control of my body quoted a 3% risk of complications, putting the surgery on the high end of low-risk cardiac procedures. He also mentioned that he woke up at 5 a.m. to practice jazz saxophone most mornings and assured me I’d be in safe hands.
I believed him, but I still reduced the fraction. I respected that 1 in 33 was far from a sure bet and found peace in planning for every potential outcome.
When I sat down with my older sister to ask if she’d be comfortable executing my will if the worst happened, she noted a silver lining in the space and masks that stood between us.
“At least with the mask up, it’s harder to see the tears in my eyes.”
Space for Hard Days
I only have a few memories from surgery when I was real little — the yellow wash of iodine on my chest, Super Mario 3 on the hospital AV cart, a children’s book from Pastor Brad. I was skinny and pale, and my scar stuck out like a red parachute cord.
I remember even less from when I was 14.
My cardiologist at the time encouraged my parents to shield me from the details of the surgery, a best practice that has since been reversed. I didn’t know what was happening until a couple of weeks before the procedure, other than I’d be out of school well past Christmas break.
I think of my friend Mitch who also came home from the hospital that winter, and the blue Hanes sweatshirt we cut down the middle to make it easier to put on.
It still bothers me that there aren’t many photos from either occasion. It makes it too easy to glance over the gravity of those moments. They were not good days, but surely there was good in them.
In the hospital, rehearsed catchphrases like, “it’s just a poke and a burn,” when the cardiac catheterization needle slips into your numbed femoral artery, serve a similar purpose. “Don’t worry,” they say. “Everyone feels like they’re peeing,” when the warm, penny-flavored contrast dye starts flowing through the IV.
If it ever comes up, the maximum number of times a heart surgeon is comfortable breaking a patient’s sternum is five. After that, well, it gets complicated.
I’m certain that if you’ve dealt with severe trauma or loss in your life, you’ve got a similar shoebox of colloquialisms and trivia answers.
A battle against cancer, the death of a sibling, a sexual assault — there is no monopoly on suffering. And there’s no one right way to deal with the sadness and triumph and healing that comes with it.
Recognizing this affords a sort of superpower.
It’s why the best feeling I had around surgery wasn’t when I went home or when I woke up from anesthesia, or when I found the strength to read letters friends had written to lift my spirits.
It was two days before the operation during the last appointment on a circuit of pre-op diagnostic tests.
While connecting the leads to a 48-hour Holter monitor, a red-haired cardiovascular tech noticed my faded scar and shared that his young son was also born with a heart condition, a serious murmur that required medication and surgery.
“We just got great news, though,” he said. “It looks like they fixed it — he’s going to be okay.”
If only for a single heavy beat, every ounce of worry and fear about my surgery washed away. And all I could feel was overwhelming joy.