How The Hole In My Heart Almost Killed Me
I had three strokes in my thirties and nearly missed out on a life with my daughter thanks to an undiagnosed congenital heart defect.
It’s six in the morning on New Year’s Day and Ava cries from the crib, which means my wife says something to me like, “Your turn,” and I say something whiny like, “Bottle, fine,” and stumble into the kitchen and spill milk on the counter and don’t wipe it up. I leave it for later, after coffee, after the caffeine makes my mind fire right. I tuck the bottle in the waistband of my drawers so I can hoist Ava up with both arms, and she says, “Let’s play,” a new phrase for her, and I carry her back into our bed and lay her in the middle and get back in myself, Lelo and I flanking her, the three of us lying like a happy family, and for 20 seconds that’s what we are.
Then the numbness starts.
I notice it first in my right arm, then realize it’s creeping into my leg, too. That’s weird, I think, two limbs falling asleep at the same time. Soon there’s no feeling on that entire side of my body, from shoulder to toes. I shift positions, rolling onto my back so blood can flow freely.
Five seconds, then ten, then twenty. Still numb.
Fear spills out of me like the milk rolling down my daughter’s chin. I’ll miss everything. Kindergarten. A musical instrument. A boyfriend, a girlfriend. I’ll miss the privilege of knowing Ava as an adult.
I shake my dead hand back and forth, back and forth, and say to my wife, “Something’s wrong,” and she says, “What?” and I say, “It’s happening again.”
Her eyes open: “Wait, what?”
“911,” I say.
Lelo is to the phone fast and I roll over onto my stomach, a gesture that Ava interprets as an invitation to play and she’s straddling my back and yelling, “Hop on pop! Hop on pop!” which makes this moment of emergency seem ludicrous but also sort of perfect, the way a child can’t comprehend how grave and mortal things are.
She keeps thumping her butt on my back and chanting, “Hop on pop!” and I crane my head around to see her as she bounces on me, and I say to Ava, “I don’t want to die.”
It’s silly to say that to an 18-month-old, but I can’t stop myself, and maybe, there’s no better person to tell because she’s the reason I need to live.
Three years earlier, Lelo and I went south from our home in San Francisco, headed for the Los Angeles Times Festival of Books. I was scheduled to sit on a panel with some other indie press novelists, but instead I heard a popping noise in my head and lost the ability to talk. I ended up at a Hollywood emergency room on a Sunday morning, missing the festival. After a CT scan, chest X-ray, and an MRI we were told the terrible news. I had a stroke. I was 35 years old.
And actually, I hadn’t just had one stroke. The MRI showed a lesion on my brain, a scar from a stroke in my past. When I told the neurologist about a destructive, not-so-distant drug history, she said I probably had the first stroke when I was loaded and might not have known. I imagined myself sitting at a dive bar, coked up and twisted on whiskey, and stroking right there, surrounded by other sorrow machines, me speaking in tongues, brain curdling, and no one even noticing.
Once Lelo and I traveled back north from Hollywood, over the next few months my neurologist would run a gamut of tests and eventually shrug her shoulders. She’d note a ubiquitous heart defect called a Patent Foramen Ovale, or, PFO, say it’s nothing to worry about, it’s found in 20% of the population. She’d say, “The stroke seems to be an anomaly. Take a baby aspirin every day and hope for the best.” Her misdiagnosis would almost cost me my life.
In the ambulance, my symptoms get worse, affecting my vision, my speech, and the guy asks me questions in the back and I’m having trouble talking, producing these horrible moaning noises, macerated syllables that don’t mean anything, and he averts his eyes, tells me not to worry about it, and then we are at the admittance desk at the hospital and I’m being asked the same batch of questions, along with some forms that I’m supposed to fill out, clipboard thrust at me as I lie on the rolling gurney. I’m supposed to start by writing my name and address and the like but my brain is broken, the pen won’t work — I try to spell J-O-S-H, knowing full fucking well that the second letter of my name is O, so why did I write down a W, why can’t I remember how to make an H? and the merciful nurse says she’ll write these things down for me. Trying to speak is still distorted, garbled; the words “San Francisco” take forever to fall out of my mouth, and the nurse looks at me with pity.
By the time I change out of my clothes and get some preliminary tests done, my physical symptoms have all subsided. No numbness. My speech is normal.
The on-call neurologist is a young guy. Too young. I want gray hairs. I want his eyes to say I’ve seen it all. He’s too young and I’m too scared, and he orders a batch of tests, imaging to make sure my brain isn’t still bleeding, which it’s not but the pictures do confirm that I’ve had another stroke.
“That’s three,” I say.
He gives me the same pitying face as the nurse.
I am wheeled up from emergency a few hours later, loaded into the stroke ward. It’s me and a bunch of 80-year-olds, and each new hospital worker, every orderly and nurse and doctor, all say the same thing upon seeing me for the first time: “You’re so young.”
It becomes a kind of chorus, and they don’t mean it in a cruel way, but that’s how I’m hearing it. You’re so young, you must really deserve this, that’s the only reason you’d be here.
My stepmom relieves Lelo of any Ava duties so she can spend time with me, bring me supplies, a pillow, a blanket, some books. Things to make this room feel less, well, like this room feels: a place where 80-year-olds have strokes and die.
We watch football and try not to talk. She is worried about becoming a widow. I am terrified that I’m going to have a bigger stroke any minute, and Ava will have no idea who I am.
Another nurse comes in to draw more blood. “You’re so young,” she says, sticking me.
As the docs go through all their tests, they finally find the culprit causing all these strokes, my congenital defect: My heart is missing an entire wall.
I have an eight-millimeter hole (a dime is about one-millimeter thick, so imagine a stack of eight dimes). There should be a wall separating the atria, the two upper chambers of the heart. This partition prevents blood from flowing the wrong way, so if in fact, you have a blood clot, it will hit this wall, but without this, there is a gaping hole for clots to travel up to the brain.
A neurovascular surgeon will build a wall in my heart, and I will be under anesthesia, a lovely opiate called Fentanyl. It will be the first time I do drugs in six years. In the junkie community, it’s called a freelapse. You relapse, but it’s OK. You get a free pass. You’re supposed to get high, just following the doctor’s orders. Your standard, garden variety freelapse.
There is only one surgeon who does these types of heart procedures, called ASD closures, at University of California, San Francisco, and he won’t be able to operate on me for two months. What that means is that I will have to pump an intense, outrageous, and hideous combination of meds to keep me safe until the surgery, each pill keeping my blood “slippery.” This is one of the doctors’ buzzwords. Slippery. They mean thin, something that can’t clot, can’t turn to ice, blood like vodka in the freezer.
Keeping my blood so slippery, of course, comes with its own risks. Such as bleeding to death. I am given a list of things I should not do on all these meds, and this list, this crazy list, makes me fear everything. Don’t drive a car, says the list. In fact, don’t ride in a car. Don’t shave. Don’t use knives. Don’t exercise. Don’t have sex. Don’t floss your teeth. Don’t cut your nails. Don’t be alone with the baby. Don’t pick up the baby. Don’t sit for longer than an hour. Don’t take a multivitamin. Don’t eat kale or spinach — too much vitamin K. Don’t go outside, if it can be avoided.
These meds have a lot of side effects and I stumble around my life, top heavy, my head feeling like an old parking meter full of quarters. The worst is the diarrhea. I lose 25 pounds in three weeks.
On the operating table, I orient and calm myself by looking around at various lights, computer monitors, nurses. The anesthesiologist runs a line into the artery in my wrist. His needle, like an umbilical cord, pumping my favorite food: oblivion.
This is it. I am probably about to die. I’ve seen Lelo and Ava for the final time. My sisters. My moms. I’ve written my last sentence. These are the last moments of my life, lying here and looking up at the eyes of grumbling strangers, their mouths concealed behind masks.
“This first shot will be like drinking a beer,” the anesthesiologist says, doing his merciful work. His needle brings the Fentanyl. This is like seeing a long-lost friend. Time loses its math, and everything gets heavy, oozy with smudged hues. I am high again.
I am home.
The surgery takes about 90 minutes, though to me it feels like seconds. I’m groggy and still high as they wheel my bed downstairs. They verify if the surgery is a success by “bubble test.” They shoot saline bubbles into my heart and hopefully, the bubbles hit their device, my new wall. If the bubbles can’t get through to zoom around my whole heart’s chambers, ambling this way and that like clouds, I’m fixed.
I lie there and see the saline bubbles fly into me on the ultrasound machine. There is my heart on the monitor, black and white, beating and repaired, and the bubbles hit the newly implanted wall. I know those are only bubbles made of saline, know that they are not in fact blood clots, yet that’s what I see, a whole infantry of clots trying to cross through my heart and speed up to my brain, trying to kill me and take Lelo and Ava away, but they are blocked.
I get to be a dad and a husband for a while longer. There are obviously no guarantees, but I’ll make it till tomorrow. I’ll get to make new memories with Ava and if I’m lucky, I’ll live long enough that we can walk through an entire garden of milestones, and I’ll look back on a good life, a long life, one without relapse or divorce or estrangement, one in which I bask in our luck: I survived three strokes in my thirties, survived an ill-formed heart, survived a procedure that saw surgeons entering and planting a device in my chest.
I finally make it to the L.A. Times Festival of Books, better late than never, a month after my heart surgery. I’m still very weak but that doesn’t matter. I sit onstage with a few other writers. There is a placard in front of me with my name. There is a bottle of water. There is a microphone. And there is a roomful of people, the audience a hundred strong. My heart is fixed and it beats. And the three other writers onstage have beating hearts, too, and everybody in the crowd has one, my beautiful daughter and wife among them. We are all together.
Joshua Mohr is the author of five novels, most recently All This Life.
To learn more about All This Life, click here.