Opening My Heart

BOOKS BY TILDA SHALOF

A Nurse’s Story:
Life, Death, and In-Between in an Intensive Care Unit

The Making of a Nurse

Camp Nurse

Opening My Heart:
A Journey from Nurse to Patient and Back Again

Lives in the Balance (editor)

Heartfelt thanks to the many people who took care of me and this book, especially:

Dr. Tirone David, Chief of Cardiac Surgery, Toronto General Hospital; Milutin Drobac, Pat McNama, Janet Morse, Len Sternberg, Ivor Teitelbaum, Joy Bartley, Maria Kirchhoff, Marion McRae, Leslie Moffat, Christine Sterpin; staff of
CVICU
and Cardiology 4
A
.

Judy Boychuk-Duchscher, Mary Ferguson-Paré, Doris Grinspun, Linda Haslam-Stroud, Paris Jalali, Mary-Lou King, Rosemary Kohr, Ruth Lee, Joan Lesmond, Marlene Medaglia, Judith Shamian, Laura-Lee Walter.

Marilyn Biderman, Elise Dintsman, Daneen DiTosto and family, John Fleming, Joy Friedman, Anna Gersman, Pamela Glass, Tex and Bonnie Shalof, Stephen Grant and Sandra Forbes, Robert Grant, Vanessa Herman-Landau and family, Omri Horwitz and family, Avery Kalpin, Annie Levitan, Solly Katz and family, Elba, Barry, and Nadine Lewis, Robyn, Bob, and Norah Sheppard and family, Michael and Barbara Turner-Vesselago, Chick and Dick Weiner.

The staff of the Medical-Surgical
ICU
at the Toronto General Hospital, the University Health Network, especially: Robert Bell, Lesley Barrans, Allyson Booth, Sherrill Collings, Nathalie Côté, Ingrid Daley, Belle Dhillon, James Downar, Gail Fairley, Maureen Falkenstein, Marcia Fletcher, Michael Fraser, Maude Foss, John Granton, Laura Hawryluck, Margaret Herridge, Grace Ho-Young,
Thileep Kandasamy, Brenda Kisic, Connie Kwan, Neil Lazar, Edna Lee, Vincent Lo, Murry Macdonald, Mindy Madonik, Bella Manos, Kate Matthews, Robert McGregor, Mercelies McHugh, Moira McNeill, Denise Morris, Wendy Radovanovic, Meera Rampersad Kissondath, Juliet Ramsay, Janice Stanley, Andrew Steel, Derek Strachan, Kelly Sundarsingh, Sharon Reynolds, Claire Thomas, Mugs Zweerman; The Critical Care Outreach Team; Arnie Aberman, Wilfred DeMajo, Brian Kavanagh, Stuart Reynolds.

Laura’s Line: Lisa Huntington, Ann Flett, Cecilia Fulton, Judith Allan-Kyrinis, Mary Malone-Ryan, Linda McCaughey. The Bagel Club: Stephanie Bedford, Janet Hale, Jasna Tomé, and honourary member Amber Verdoni; Eric Bailis of St. Urbain Bagel.

All of Dr. Mehmet Oz’s books have been helpful to me in improving my wellness and overall health. An excellent resource on cardiac surgery is
www.heart-valve-surgery.com
.
Shop Class as Soulcraft
by Matthew B. Crawford clarified my ideas about the value of hands-on work as it applies to nursing care. For the best writing teacher in the world, check out
www.freefallwriting.com
.

Everyone at McClelland & Stewart, especially Doug Pepper, Elizabeth Kribs, Terri Nimmo, Scott Richardson, Heather Sangster, Ashley Dunn.

Ivan, Harry, and Max Lewis – closest to my heart.

My heart was opened on an operating table and I knew that in order to tell this story, I would have to crack it wide open all over again. However, I am happy to do so if you will find something of your story in mine.

After twenty-five years as a nurse, I suddenly became a patient and was surprised to discover I had a lot to learn on the other side of the bedrails. Being in the hospital can be a confusing and frightening experience, even for me, a seasoned professional, entirely familiar with that world. What helped me the most was staying in charge of my patient experience and working in partnership with all of my caregivers. I show you how you can do that, too.

This is a true story. Details have been changed to protect privacy. Clinical information is accurate, but please consult experts about your medical issues. Don’t pull some of the stunts I did: I didn’t always make the wisest decisions about my own health care.

This book is for patients and caregivers (most of us will have the chance to be both at one time or another). I hope it is a comforting companion to anyone facing not just cardiac surgery but any hospitalization or illness. It’s a lot to ask of a book, but many have done that – and more – for me.

Here’s wishing you strength and courage to take care of yourself and others.

Tilda Shalof,
RN, BSCN, CNCC (C)
Spring 2011

The story of my heart begins with an earache in the night.

The ear belongs to my eleven-year-old son, Max, who wakes me, head in his hands, tears welling up. Sleepy mom and hard-boiled nurse that I am, I dope him up with a slurp of purple painkiller syrup and send him back to bed. But in the morning his ear still hurts and he’s spiked a temperature, so I take him to the doctor.

The waiting room is packed. How much longer until our turn? I pester the receptionist, but she’s too busy to answer. Hovering around the front desk, I scan the rack of doctors’ business cards. Three general practitioners and an asthma specialist share this office. Oh, a cardiologist, too, and I pocket one of his cards. Some people collect stamps, antiques, or lovers. I collect cardiologists – a hobby of mine for years.

Eventually, we get to see Dr. Ivor Teitelbaum. He’s my husband’s doctor, and Max and his older brother, Harry’s, doctor, but not mine. I don’t go to doctors.

Ivor is a handsome, smartly dressed, young-looking middle-aged guy with an old-school manner. Always relaxed, he never rushes us along, despite the bustling waiting room. He examines Max, then offers me his otoscope so I can look into the ear canal myself and see the bulging, inflamed tympanic membrane, severe enough for Ivor to prescribe an antibiotic.

We get up to go, but I pause. “This cardiologist” – I wave the card at Ivor – “is he any good?”

“Very.” He looks up from writing in Max’s chart. “Who needs a cardiologist?”

I shoo Max back out to the waiting room, pull up my T-shirt, and nod at the stethoscope around Ivor’s neck to remind him of my secret. I’d had to tell him so that my children’s hearts could be checked for defects. Fortunately, neither inherited my heart problem.

It takes Ivor only a quick listen and then he looks up at me, hard, grips me by the shoulder, and steers me down the hall to the office of Dr. Milutin Drobac, the cardiologist.

“She needs to be seen,” he tells the secretary, “as soon as possible.”

“It’s your lucky day,” she says. “I just got a cancellation. Tomorrow at 11:00?”

“Sorry, I can’t make it,” I say. “I’ve booked a haircut.”

She shoots me a glance.
What’ll it be, your hair or your heart?

Okay, heart it is.

At home I give Max the first dose of antibiotic and another dollop of grape-flavoured syrup. Soon he’s back to his usual cheery self, so I hustle him off to school, leaving me alone to muse on my funny-sounding heart.
It’s only a murmur
, I remind myself. What a cozy-sounding word. It almost sounds like a good thing to have. Who wouldn’t want one? Many people have murmurs and most are normal or “innocent.”
But not mine. Murmur
is a term that refers to
any irregularity in the heart’s blood flow, and in my case it’s due to a serious heart defect – a faulty valve. It’s congenital, meaning I was born with it.

As a child, I sensed something was wrong from the get-go. The heart specialists who spoke in solemn tones and the protective, cautious way my parents held me all conveyed the message:
Fragile – Handle with care!

Then, around the age of ten, on one of many days off from school, I sat in a pediatrician’s office and heard him say to my parents: “In time, her condition will worsen. One day she’ll need open-heart surgery.” He probably assumed I wasn’t listening (a mistake many adults make around children) because my head was buried in a book. “No overexertion,” he warned them, “and no sports or gym classes.”

For my parents, that was a perfect prescription. It dovetailed with their need to keep me close, conveniently available to help my chronically ill and depressed mother. As far as they were concerned, school was optional.

Don’t think I didn’t hear the doctor’s parting comment to my parents before he left the room: “A certain percentage of these children experience sudden death.”

That’s some experience
, I thought and dove deeper into my book.

I’ve always known my heart could stop suddenly, but I banished the thought. I accorded my heart no respect, never allowing myself to think I had any physical limitations. I avoided strenuous physical activities, but in my mind, I was swimming the English Channel, riding horses, even running a marathon. Meanwhile, my parents became preoccupied with their own health problems and I became a nurse so that I could focus on other people’s problems, not dare think of my own. My
MO
has always been to fly low on the medical radar and hope that an apple a day would keep the doctor away. (I eat a lot of apples.)

After a quiet, sedentary childhood, I threw caution to the wind and became a wild, adventurous teenager, then an active adult and energetic mother of two boys. I’ve always done whatever I wanted to do. That is, until recently. Lately, I haven’t been feeling my best.

The next morning, I find myself where I always intended to never be – a cardiologist’s office. First, there’s the electrocardiogram
(ECG)
and an echocardiogram, tests I’ve helped many patients through, so I know the ropes. I strip off my T-shirt and bra, don the blue paper gown, jump up on the table, and lie down on my back. As Cezar, a big, burly guy who’s Dr. Drobac’s technologist, does the
ECG
, I glimpse the tracing over his shoulder, noting that my heart is in a regular rate of sixty beats per minute.
Normal sinus rhythm. So far so good
.