Brugada Syndrome: Living on the Edge

Brugada syndrome personal story
She turned to me and said, “You had another cardiac arrest."
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It was my seventh routine check-up at the hospital, nearly four years after the sudden cardiac arrest that “killed” me for twelve minutes.(for more details see ). With the memory of the incident fading, I was just starting to get used to the check-ups.

I’d sit in the chair and the doctor would place some device over my heart and review my implanted defibrillator (ICD) activity history. Then she’d send quick electrical impulses through the ICD into my heart to verify the wires could still stream energy and cause the muscle to react – a fleeting sensation I can’t say is pleasant, something like magnetic liquid churning through my chest.

These ten-minute sessions would end with the doctor saying something like “Everything looks fine. You still have six years left on your defi. See you again in six months.”

I’d often respond with the same question after the same apology. “I’m sorry to ask this every time, but does that mean I’ll need to go through surgery again to get a new device put in?”

And the doctor would explain the whole procedure to me again. Yes, in six years I’d have to have a new ICD put in. No, they haven’t invented one yet with a battery that can be recharged through the skin. Yes, they’ll be sure to change the device before the battery runs out. And so on.

But this time the doctor tapped the computer keyboard more delicately, and she finally exhaled a soft “huh.”

That was it for a while. I barely considered it.

Then she turned to me and said, “You had another cardiac arrest. Your defi saved your life.”

She said it quietly, and then added, “You would have died in your sleep that night.”

It’s fascinating how significant news creeps in quietly, like a home burglar. Hearing the words for the first time is like a bump in the night. You stir and half-think, “What was that?”

It takes a moment to regain full consciousness and comprehend that the noise was an object falling off a table in your living room. Something’s not right.

Another moment urges you to consider the implication of such a noise, that there must be a person in your house, uninvited, in the middle of the night. Something’s wrong.

Only after this handful of slow-motion moments do you finally entertain just what kind of danger you might be in and actively seek further information, like getting up out of your bed and peeking down the stairs, calling out,

“What night?!”

The doctor studied the monitor and nearly whispered, “December fifth. St. Nick’s.”

December fifth, what was I doing on December fifth?  Putting milk and cookies out for St. Nick with my children. That was a month ago. How can that be possible?  That was a month ago.

“But I don’t remember anything happening,” I challenged.

“You might not have noticed,” she said. “The ICD went off at 12:04. You were probably fast asleep.”

“Yeah,” I laughed, “but I’ve felt this thing go off before, once after it was first implanted. They set the wires wrong and it blasted me like I accidentally swallowed a pissed off donkey. I fell off the toilet seat!”

The doctor nodded nonchalantly. “You may have woken up, but by then the blast had passed and your heart was back on track. You probably rolled over onto your side and went right back to sleep.”

Well how about that. It was hard to file away. The first time was all drama and trauma, dropping dead to the floor during dinner, turning gray, no breath or heartbeat, receiving CPR until the paramedics came and they injected the adrenaline and blasted me with the defibrillators till they got a beat again…. Weeks in the hospital followed a related case of pneumonia, topped with several more weeks of ergo- and physical therapy.

Then it was okay to cry.

But this time it was all so anti-climactic; so much, in fact, that I slept through the whole thing, like it was a late night rerun. It didn’t seem appropriate that my eyes were welling up.

And yet it was just that, a rerun, a repeat of that first nightmare, of just dropping dead without warning. It wasn’t an isolated incident anymore. It happened again. It was a situation now. A condition.

“This is a different situation now,” the doctor sighed. “We need to put you on medication right away.”

Something called Cordichin. Something not easy to get here in Europe, of course. Something I’d need to take as a trial run under hospital surveillance for a while. Of course. A few days later I would return to the setting of my biggest nightmare, suitcase packed for an undetermined number of days.

Everything is on hold for everyone in a hospital. Obviously, the patients are waiting – for treatment, for results, for release, for death. Those who can do so amble aimlessly throughout the corridors, going in circles, or better said dodecahedrons, probably. Just waiting. The visitors are waiting in the waiting rooms, the cafeteria, at the sides of beds. Even the taxis outside park in formation like a row of barracuda beneath an intercoastal bridge, waiting to prey on the wounded, the sick and the dying. They also have to make their living, if even at the hospital. The Waiting Place. Dr. Suess would be very disappointed.

But the people-watching at a hospital is as fascinating as it is at the airport – two places that bring all walks of life together, either to migrate, or to survive. Of course, instead of the excitement or superficial trepidation in the faces of the migratory (Isn’t missing a flight a small matter at the end of the day?), the concern on the faces of the patients and their visitors is genuine, all the waiting weighting down their cheekbones, aging their crow’s feet.

I was number 69 at 9:00 in the morning. They were currently on 51. When we were eventually called to register, the woman had two questions after I provided my registration documents:

1. Do I have a death note registered with the hospital in case I pass away during my stay?

2. What is Brugada Syndrome?

My answers:

1. No I don’t.

2. I don’t know.

She nodded and asked for my right hand, then strapped the cuffs on me – the admission and ID bracelets. I was in the middle of working out a joke about cardiac arrest in my head but was sent away before I could deliver my amusing one-liner. It was time to take blood and an ECG, and then find my bed for the next however many days.

I was assigned to the same ward I’d stayed in four years earlier. I recognized some of the nurses. A couple of them gave me funny looks.

Five hours later the doctor came in to discuss the medication, which she knew nothing about. My wife asked about potential side effects, and the doctor replied, “All medications have the potential side effect of triggering the very ailment they’re meant to cure.”

So, you’re saying I’m here because the medication could cause cardiac arrest, I said.

The doctor raised her shoulders and reminded me that she didn’t know much about the medication. I could see she was in a hurry and thanked her as she left the room. Then I smiled to my wife, took the plastic shot glass containing one white pill, and said, “Bottoms up!”

And then we waited. For a rash, a stomach ache, cardiac arrest. Nothing happened the first night, and I quickly felt ridiculous for taking up a bed in the hospital. Certainly, someone else could use this bed more than I.

The second night brought the first feelings of dizziness, but I neglected to share that with anyone. I wanted to go home to my wife and children. And I forgot to mention the stomach aches, stinging eyes and strangely hot feet as well. My ECG and blood pressure stats were acceptable, so I didn’t need to stay in the hospital. I could just as well feel shitty at home, near my wife and children at least.

I left the hospital choked up but determined to get far away before any doctor noticed something peculiar about my demeanor. Outside the world was going by again. I remember it well from my first visit there, the surprise to realize that even though the sky over my world was falling, everyone else’s remained intact. It’s refreshing to know that the world forgets about you, that the world goes on without you. It should make you realize that whatever you have, whatever you’re going through, can’t be that bad if the world doesn’t stop to notice. I chose to take comfort in the fact that I am small and insignificant.

It would be a couple weeks before the last of the side effects would come and go, the spells of vertigo, nausea, fever and chills. I wasn’t allowed to drive for three months because it is the first three months after a cardiac arrest that are the most likely to host another one.

The ground continues to feel like thin ice beneath my feet, which at any moment could give way beneath me and drop me into an abyss no one can guarantee I’ll come back out of. Does third time’s a charm work in favour of death as well?

Another cardiac arrest could happen at any moment, any time. What if it happens while I’m driving, or carrying my children to bed?  Will I briefly pass out and run my car into oncoming traffic?  Will I get dizzy and drop my one-year-old son down the stairs?

But living with questions like these isn’t “healthy,” they say, so I’ve written them down on post-it notes and stuck them upside down inside drawers where my wife and kids can’t find them.

I am fortunate to have experienced tragedy in my life, and to have its potential waiting for me around every corner. My priorities are right where they’re supposed to be. What better excuse can anyone have than that to live life the way we’ve always dreamed to live it?

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