Living one heartbeat at a time

Fatima Kazmi at Sick Kids after her surgery with pacemaker technician Christine Chew.

Fatima Kazmi at Sick Kids after her surgery with pacemaker technician Christine Chew.

I’m stalked by what cardiologists call a silent killer. Its victims are usually young and oblivious.

I have cardiomyopathy. Luckily, I caught it before it could catch me.

I grew up with doctors surrounding me. My grandfather Zeeshan Hassan Kazmi was an ophthalmologist, my aunt Samina Abidi is a general-physician-turned-professor and my best friend, Arsa Syed, is graduating from University of St. Andrews’s medical school.

But I was never a patient until my life took a terrible turn on Dec. 21, 2002.

My 18-year-old sister, Zainab, died of cardiac arrest. Her loss came as a shock, but her cause of death left us perplexed. My parents only knew of the old and ill that died of heart attacks. My sister was young, healthy and active. She showed no symptoms apart from tiredness that she blamed on school stress.

After her autopsy results came back, we found out that she suffered from cardiomyopathy: a heart disease that can stem out of another disease or can be inherited through genes. The doctors feared it was the latter and referred us for echocardiograms. I was the last one to be tested but the first — and only — member of the family to be diagnosed in October 2003.

Cardiomyopathy causes the heart muscle to thicken or replace muscle tissue into scar tissue. As it progresses, the heart is unable to pump blood and maintain a normal electrical rhythm. The irregular rhythm called arrhythmia can cause heart failure.

There are different forms of arrhythmia; I, unfortunately, have ventricular tachycardia. It’s deadly because it can cause ventricles to contract more than 200 times per minute. They are sudden and rapid. Your heart rate drops, and it can no longer pump blood. Your face becomes pale, your lips turn white, you get dizzy and soon your organs shut down. Then you die.

For the outsider, it’s morbid. For the insider, it’s the sad reality that perpetuates itself at every visit to the heart-failure clinic at Toronto General Hospital.

My parents were too distraught to take chances on another child. I was placed on a beta blocker to slow my heart function. My cardiologist, whom I fondly call my hero, Dr. Andrew N. Redington at The Hospital for Sick Children, suggested I get an implantable cardioverter defibrillator. He promised it was small, unnoticeable — and painless because I would be asleep during the procedure.

I was 11, and at that age, surgery isn’t trivial. I’m terrified of needles; any nurse who has administered an IV, a catheter or a needle would agree. It took the collective effort of an entire extended family to convince me.

On Mar. 3, 2004, I was taken to the operating room. I requested the staff to remain quiet while I prayed. I wasn’t sure whether I’d wake up alive, but I hoped I did as I sniffed the strawberry-flavoured gas.

I remember waking up hazy, confused and constantly puking. It was the effects of the anesthesia wearing off. Nothing appeared different until I started walking. I was tilting to my left side; there was an obvious weight pulling me down. An ICD incorporates a pacemaker to pace the heart in case it beats slowly, and a defibrillator to shock it in case it stops beating. It’s made of titanium, and aside from an incision scar, it is invisible. To make permanent room for it, they had to remove muscle and build a makeshift pocket. The soreness would be there for a while, and I wasn’t able to lift my arm up.

My Grade 6 class would send me letters and cards with their love and support. My parents pampered me and I was showered with gifts. But it did not compensate for the changes I had to make. I dropped out of gym class; I could no longer run cross-country or dance like I loved too, and I received a new annoying name in school: the bionic woman.

The next seven years went by smoothly; my health was stable and I continued my life as normally as I could. I had forgotten the magnitude of my disease.

In the second last month Grade 12, I came home from school feeling tired. I went upstairs and started folding the laundry. For a split second, I felt like I was sleepy and put my head down on the bed. I can’t remember the time between my head hitting the mattress and the defibrillator going off. I remember it as a punch in the chest.

I hysterically ran teary-eyed downstairs. My mom said I was pale when I reached the kitchen. But the colour came back almost immediately. I phoned the pacemaker clinic at SickKids. They examined my results, which they received like a fax from a machine that has a palm-sized scanner at one end and a telephone line on the other. I told her I was coming to see her in person.

After checking me out, she reassured me that this could be an isolated case. It didn’t mean it would necessarily happen again, and I was reassured I could continue living my life normally. For two weeks, I was too traumatized to attend school, stay alone in a room or sleep in my bed.

The next Monday, I went back to school, but I was still afraid. During my last class, at 3 p.m., I felt dizzy and knew immediately that I was going into another episode. I think my lack of control on the situation was scarier. I started seeing blackouts and screamed out to my teacher. She held my hand and I felt a boom. She later told me she, too, felt the jolt.

There were two missed calls from my mom on my phone. Apparently, moms know when something bad is about to happen. The paramedics came to take me, but I said I wouldn’t go on a stretcher. I was in Grade 12 and I didn’t want to embarrass myself, so I walked to the ambulance.

My mother cried throughout the ride, but the medic insisted I was fine.

I was immediately admitted and hooked up to monitors. I heard bits and pieces of what was said: It was tachycardia, it went close to 200 beats, it’s pacing and she can have an episode again.

The next five days, I stayed in the intensive care unit with an IV pumping Amiodarone, an antitachycardia, into my bloodstream. I was later moved to a regular room in the hospital and spent three days there. My hand had swelled up, but I had plenty of visitors to keep me occupied.

All my friends knew about my condition, but no one really knew the seriousness of it until now. I took time off school and did my homework at home. But prom was around the corner, and I wasn’t going to miss out on it. So I went.

I assure you, lying in the emergency room with a team of doctors passing and following orders while you anticipate the next defibrillation is as scary as emergencies you see on hospital television shows. Your life really does flash in front of your eyes, and you really do think about the people you love most.

But when you get home and time passes, it becomes a memory, however ugly it may be. There is no known cure for it, except for a heart transplant. There are medications to stabilize the heart and prevent further damage, but I’m kind of stuck with this. I try not to exert myself unless extremely necessary, and I put my health before anything.

At the airport, I have to avoid the metal detectors because it can cause the ICD to stop working. So I head straight to the security check line to get patted. One time, while I was putting on my shoes on, a girl commented how lucky I was that I get this VIP treatment. I smiled, thinking that if only she knew of all the terrible things that came along with it. Then I laughed — if only she knew how strong it makes you.

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