Opening My Heart Read online

  “Are you keeping up with your peers?”

  I haven’t heard that phrase since I was fourteen when I begged my parents for the real Adidas running shoes with three stripes that the cool kids wore, not the cheap North Stars with only two. Of course it was only a fashion statement and status symbol, since I wasn’t doing any running anyway.

  Then there is my recent attempt to keep up – literally. It was on a vacation to Nelson, British Columbia, to visit my friend Robyn, during a group hike up a trail on Pulpit Rock, in the foothills of the Kootenay Range, near the Rockies – listed as a “gentle climb” in the guidebook. As I struggled to keep up with the pack, other friends easily strolling along faster, farther, and higher were casting back sympathetic gazes. Robyn stayed behind with me, looking worried.

  “I’m taking it slow … so I can … enjoy … the view,” I said as I huffed and puffed, shaky and breathless. I need to make it to the top of this hill, was all I could think as I kept stopping every few feet to clutch my chest, praying I wouldn’t collapse on the way. I’m a wounded buffalo, trying to keep up with the herd. Shoot the beast! Put it out of its misery! We both knew something was wrong but didn’t discuss it. Now I allow myself to know the truth: I could have dropped dead up there on that mountaintop.

  Suddenly I realize the real reason that I quit the amateur parent-teacher talent show a few months ago. For my audition, I chose “A Cockeyed Optimist” from South Pacific, and mercifully they cut me off after a few bars since I sucked, but I was also too out of breath to finish. Nonetheless, they gave me a one-line solo in a song-and-dance number from CATS that required me to leap onto a platform wearing a skin-tight catsuit (what was I thinking?) and belt out, “Can you ride on your broomstick to places far distant?” I couldn’t make it to broomstick. I bowed out, claiming to be too busy for rehearsals.

  “So, no symptoms?” Dr. Drobac presses on.

  “No.” Only a premonition of doom, which I’m having right about now.

  He makes notes in my chart – I now have a chart! – probably jotting down unreliable historian, the damning term for patients who aren’t to be trusted. He’s recorded my symptoms – what the patient reports – and now moves on to the physical examination, the signs – what he, the physician, observes and can measure.

  We look at the ECG together. “Mild ventricular hypertrophy,” he notes and points out the deep amplitude spikes in the chest leads and explains that my left ventricle is dangerously enlarged as a result of having to work extra hard to pump blood against the resistance of a constricted aortic valve. Any ICU nurse would grasp what he’s talking about, but my thinking is so jumbled I can’t follow his train of thought.

  He stands up for the physical examination, ready to discover his own findings. Okay, let the objective tests be the judge. I may lie, but they won’t.

  Back in my patient “uniform,” I lie down on the examining table. Dr. Drobac palpates my pulses, the carotid in my neck, brachial in my arm, radial at my wrist, femoral in my groin, popliteal at the back of my knees, and dorsalis in my feet. My pulses have always been weak and he notes that. He examines my jugular neck veins, which reflect the pressures in my heart. He places the bell of his stethoscope on my chest, closes his eyes, and listens. As I await my verdict I recall that according to Laura’s profile, in addition to being slim and fit, cardiologists are the most musical of doctors. It does make sense: they spend their days listening to the melodies of the heart and have to be exquisitely attuned to pitch, volume, rhythm, tempo, crescendos, and diminuendos.

  As Dr. Drobac moves his stethoscope around my chest, I know exactly what he hears: a slushy, mushy whooshing. My heart doesn’t have the distinct sounds of a healthy cardiac cycle of contracting and relaxing; not the vigorous lub-dub of strong ventricles pumping effectively with valves opening and closing efficiently. My heart is the swish, swish of a lazy, burbling stream.

  As a child, I was invited by medical schools as an interesting case study for doctors-in-training to learn abnormal heart sounds. Any first-year med student who could not correctly diagnose my obvious, loud systolic murmur would surely fail. But, when I grew up and became a nursing student myself, I stayed home from class the day they taught cardiac auscultation. We were supposed to listen to each other’s hearts and my cover would have been blown.

  Back in my civvies, I sit down with Dr. Drobac, who looks me squarely in the eyes. “It’s clear why you’ve come to me now. You’re not feeling well, not keeping up. The echo shows that your valve is tight. You have severe aortic stenosis.” He gives me a moment to take that in, then says what I’ve waited all my life not to hear. “There is no doubt in my mind that you need open-heart surgery to replace your valve and to repair part of your aorta, too.”

  Valve plus aorta. Cut and blow-dry. Shave and a haircut, two bits.

  The bottom drops out. I can’t breathe. His words catapult me to the other side. I’ve crash-landed on Planet Patient, a destination where no one – but especially no nurse – wants to go. Hey, don’t I get any immunity from these things happening to me?

  Way over there is the doctor, talking to me from the safe side, waving and smiling from the far shore. He still seems to be thinking he’s giving me good news.

  “You’ll need a cardiac angiogram first,” he continues, eager to get this party started, “to rule out coronary artery disease before surgery.…”

  Of course. The cardiac surgeon doesn’t want to open me up and get in there only to find blocked arteries and that I need a coronary artery bypass as well as a valve replacement.

  “Can this wait awhile?” I ask.

  “Better to face it now, when you’re feeling relatively well, with no other co-morbidities.”

  He means high blood pressure, peripheral vascular disease, coronary artery disease, hardening of the arteries, diabetes, kidney failure, a little of this, a touch of that, things waiting in the wings for most of us, one day, eventually.

  “Your aorta is enlarged … the valve severely constricted … blood flow is reduced … ejection fraction is less than 30 per cent … you’re not getting adequate blood supply.”

  “Could it be repaired? A minimally invasive procedure?” Could this have been avoided if I’d dealt with it earlier? That question, I wonder, but don’t dare ask since I don’t want to know the answer.

  “No, your valve is too diseased. Extensive work needs to be done. It has to be replaced along with part of the aorta. It can only be fixed by opening the chest.”

  But these things happen to patients! “I need time to think about it.”

  “Don’t take too long.”

  “When should it be done?”

  “Soon. Within the next few weeks …”

  Open-heart surgery – how inconvenient! I had lots of other, much more fun plans for the summer! Taking a break from my work in the ICU, spending time with Ivan and the kids, working as a camp nurse, spending time at my brother Tex’s cottage on Georgian Bay. And this was the summer we were finally going to adopt a puppy, a year after the death of our elderly dog, Rambo.

  Dr. Drobac asks if I have any questions. None and many, but first I have something to tell him that’s way more urgent than any questions I might have.

  “I want you to know that if I get a serious complication and don’t wake up afterward, or if I become severely brain-damaged or have to be on prolonged life support, please let me go. If it’s my time, let me go.” I do not want to be kept around beyond my useful shelf life.

  I blurt out these dire directives, not bothering to explain why catastrophe is uppermost on my mind.

  He’s incredulous, at a loss as to how to react to my at-the-ready disaster plan. “Have you thought this through?”

  Have I ever! I think but can only nod yes to his question.

  He looks perplexed, perhaps wondering how to reassure someone so anxious and somewhat irrational-sounding.

  “If that’s how you feel,” he says, taking me at my word, “you should document your wis
hes and make sure to tell your family doctor.”

  “I don’t have one.”

  “Get a lawyer and write a living will. Spell out your advance directives. Let your family know your wishes for your end-of-life care. Inform the surgeon.” He shakes his head. “I don’t want to disappoint you, but you’re actually going to do very well. I wouldn’t send you for surgery if I didn’t think you were going to make it. This is a routine case.”

  Surely he’s had patients who’ve died from “routine” surgery. And yes, I know, it is a good thing to be an ordinary patient with a common problem, but, see, I don’t want to be a patient at all!

  Walking slowly out of his office into the bright, hot summer afternoon, I’m scared out of my mind. Admittedly, there’s a tiny bit of relief, too, to be set free from this heavy secret buried inside of me all of these years. In my heart of hearts, I knew this day would come. I’ve always felt I was getting away with something, continually dodging a bullet. Up until now, I’ve managed to stay on this side of the bed, a nurse in charge of others’ care. Now I’ll be the one in the bed, nurses bending over my body, tending to me.

  I’ve always been such a big champion of our health care system, here in Canada, but will I remain a loyal fan when I’m on the receiving end?

  I’m also a writer of stories that have been described as “heartwarming” and “heart-wrenching.” The only thing I know for certain about the story ahead of me is that it will be heart-stopping.

  2

  EVERYTHING TO FEAR AND FEAR ITSELF

  This is so not happening!

  Oh yes it is.

  I make my way out to the parking lot after seeing the cardiologist, my heart pounding, stomach churning, legs shaking. No “flight or fight” – I’m all fright. And I know, I know, I shouldn’t drive, but I do, and worse, I call Ivan on my cellphone as I’m weaving in and out of traffic.

  “We’ll deal with it, Til,” he says in his strong, confident way.

  My news seems to come as no surprise to him. Ivan is an insurance broker and it always seemed odd that he never applied for a policy for me, but maybe he knew all along that I was too high risk to qualify for life insurance. Though we rarely talked about my heart condition, he must have realized it was serious.

  At home, I drop my purse and keys and race to the phone. I have to call Mary. Mary Malone-Ryan. You can’t get more Irish Catholic than that. But it’s not her religion I need, it’s her intellect – and her support. Originally from New Brunswick, Mary and I have been friends for years. We worked together in the ICU until she moved with her family to North Carolina, where she now works in a cardiovascular ICU.

  “Til – eee!” Mary is ecstatic whenever I call, but in a split second she senses the worry in my voice and hers drops down. “Tilmeister, what’s wrong?”

  She’s shocked when I tell her. I’d kept this secret from everyone, especially nurse friends who would have insisted I see a doctor. Mary quickly changes gears, shifting straight into clinical mode, asking about my symptoms, blood pressure, electrocardiogram findings, and ejection fraction from my left ventricle. Once the data is out there between us, we both know there’s no way around it: open-heart surgery is the only way to fix my problem.

  “You can do this,” she says calmly.

  “No, I can’t,” I wail hysterically.

  “You’re strong, Tillie. Stronger than you think.”

  “No, weaker,” I insist. I’m none of the noble things said about brave patients and their indomitable spirit, their courage. No one is going to call me a “fighter” or a “trooper”! I’m ready to run for the hills! I blubber on to Mary about putting my affairs in order, writing in-case-I-don’t-make-it letters to my kids, and music for my funeral.

  “Don’t go there,” Mary interrupts.

  “Maybe I should delay the surgery. I feel perfectly fine.”

  “You’re going to feel better afterward. You’ll have so much more energy.”

  “If I make it.”

  “It’s scary, but you’re not going to die, Til.”

  “I’m just saying. It’s possible. You know it is.”

  “Most valve replacements do very well.”

  Yes, most do, it’s true, but some don’t and those are the only ones I can think of. When I get off the phone with Mary, my mind turns to all the bad things that can happen. Patients who “don’t do well” are the very ones I’ve dedicated my career to taking care of in the ICU. We’re nurses. We know every possible Worst Case Scenario. WCSS are my specialty! Maybe I’ve gravitated toward caring for catastrophically ill people so that my problem would seem mild by comparison. Now my whole career seems like a preparation, a dress rehearsal – maybe even a death rehearsal? – for this. Waiting in the wings, I’ve played a supporting role, never the star. Now I’ll be centre-stage. Or maybe it’s more like I’ve been a loyal fan, a spectator at the game, always cheering the players from the bleachers. Now I’m going to be in the action, taking one for the team.

  I can picture it all! The images come forth, unbidden, in fullblown technicolour, high-def, surround-sound: the whine of the pneumatic saw cutting into my chest, the crack of ribs, the whirr of the bypass machine, the bloody heart beating, slowing down, then still. When the heart is stopped there’s a hush in the room while the surgeon works in silence.

  Some things are better left unknown. It’s scary enough even when it goes well. It’s probably easier going through this as a civilian, but I don’t have that luxury. We all fear the unknown, but it’s what I know that scares me. I can’t find comfort in “There’s nothing to fear but fear itself” because there are real reasons to be afraid.

  First, there are all the known, usual risks along with the unexpected, rare, or oddball events that end up as someone’s presentation at a medical conference. Common complications are infection, ICU stress ulcers, deep vein thrombosis, which could lead to a pulmonary embolus (blood clot in the lung), burst blood vessels, uncontrolled bleeding, a blood clot or air bubble in the brain or in the heart itself, collapse of the lung (pneumothorax), or the dreaded acute respiratory distress syndrome, a devastating condition that causes massive lung inflammation, affects every organ, and carries a high mortality rate. There are iatrogenic problems (ones we cause) like unintended injuries or nosocomial (hospital-acquired) infections from inadequate hand-washing practices, contaminated surfaces, or even improperly sterilized instruments. We’ve all heard of such cases. Hospitals are dirty places. I know a patient who caught a Norwalk virus after a brief visit to the emergency department for a throat infection. (Why he went to the ER for a relatively minor problem is another story.) Hospitals are hotbeds of super-bugs such as methicillin-resistant staphylococcus aureus (MRSA) or Clostridium difficile (C difficile) floating all over the place. There are even infections specific to the ICU known by the Dr. Seuss – like mantra of “Zap the HAP, VAP, and DAP” – hospital-, ventilator-, and donor-acquired pneumonias.

  More common than human error is the myriad ways your own body can let you down. Even if everyone does everything correctly, complications can happen. The immune system weakens and an opportunistic infection sets in. A bizarre reaction to an ordinary drug leads to the kidneys shutting down, boils all over the body, and the skin sloughing off. An unknown allergic reaction causes anaphylaxis, then cardiac arrest. I’ve seen all of these things happen. For starters. That’s on a good day.

  One day I was transferring a patient from the ICU to a step-down ward. She’d recovered from septic shock, pneumonia, and kidney failure. As I pushed the bed out of her room, I was chatting with her when suddenly she said, “My chest is exploding.” On the monitor, I saw her heart rate go into an erratic rhythm and she quickly became unresponsive. Ventricular fibrillation! We did cardiac compressions in the doorway. We worked on her for more than an hour but couldn’t save her. There were no indications this might happen and no one was at fault. Even an autopsy didn’t reveal the cause of the cardiac arrest. Bodies break down. Not every problem can
be prevented or fixed. Many times no one is to blame.

  There are many unsolved puzzles like these, but there is also a logical cascade of events I’ve seen time and again. I call it “One Thing Leads to Another.” A patient walks into the hospital with one problem and new problems are discovered – or caused. You start off with a straight-forward heart problem, then a respiratory infection sets in. An electrolyte disruption causes a heart arrhythmia. A “suspicious shadow” seen on the liver during a scan necessitates “further investigations,” upon which another problem is revealed. A brief dip in blood pressure intra-operatively and next thing you know, the patient’s gone into kidney failure and needs dialysis … and so on. What did I tell you? OTLTA.

  I’ll never forget a healthy, vibrant eighty-one-year-old grandmother who jogged five miles every day. At an annual checkup, her family doctor found hematuria, a trace of blood in her urine. A CT scan of her kidney showed a small mass. “It may cause a problem in ten years or so,” a surgeon said, but the patient wanted to get it over with now when she was feeling well. A reasonable choice, yet, during the surgery, her intestine was accidentally nicked. In a few days, her peritoneal cavity was filled with fecal contents and her blood became contaminated. Meanwhile, the pathology report came back stating that the original kidney tumour was benign. She hadn’t needed surgery in the first place, but now she needed multiple surgeries to drain the infection and to create an opening for feces to drain out. She got pneumonia, a hospital-acquired infection, then kidney failure.

  A doctor’s note in her chart read: This patient is not a well woman.

  She was, once!

  She walked into the hospital in perfect health and by the time she left, she’d lost a kidney, most of her large and small intestine, had a chronic infection, and was bed ridden. After a year-long hospital stay, she was brought home and died there. Yes, I’ve seen too many times when it would have been best to leave well enough alone. Beware of OTLTA!