Opening My Heart (4 page)

The funny thing is, medical and medication errors are not really uppermost on my list of fears. What scares me more is another sort of “error” that is way more pervasive. There was a time when I committed this kind of error myself. These are instances when I saw a problem and did nothing. I looked away.
I’m only a nurse
, I thought.
What can I do? They won’t listen to me. Someone might get mad at me. I might be wrong or get into trouble. I might make a fool of myself
. Once, I overheard a nurse losing her cool and speaking rudely to a patient and I kept quiet and didn’t intervene. Another time, a surgeon leaned over a patient’s bedrails, his lab coat sleeve drooping into the patient’s abdominal wound. Afterward, he moved on to examine the next patient, giving a free ride to those hitchhiking bacteria and stowaway viruses and I didn’t say anything. Not anymore!

Despite my fears – both the real ones and the irrational ones – I know that my prognosis is good. My heart defect can be fixed. If all goes well, I’ll be “cured.”

Ivan isn’t fazed by any of this. In fact, in all the years I’ve known him, I’ve seen him upset only a few times: at the murder of John Lennon (yes, we’ve known each other that long), the horror of 9/11, and moments in our marriage when I blurted out hurtful things. In the evening after seeing the cardiologist, we sit together on the couch and watch
TV
. Ivan reaches for my hand and gives it a squeeze. At 11:00 he clicks over to the national news: terrorists, global warming, and the economic crisis. At 11:30, it’s over to the local channel for a rundown of the latest stabbings, robberies, and house fires around town. We drink coffee and go to bed. This is our usual routine, crazy as it sounds.

Ivan lies down on the bed, settles in, and is soon sound asleep. I’m usually like that, too, but tonight I’m wide awake, listening to my heartbeats.
How many more will I have?
I get up and wander around the house, do a Sudoku puzzle, then go to my office and reorganize my bookshelves. Out in the kitchen, I open the refrigerator, hunting for a snack, but my usual emotional fix doesn’t work. I can’t eat a thing. I return to bed and see myself stretched out on a table, a magician’s assistant ready to be cut in two. My heart springs out of my chest like a bird popping out of a Swiss cuckoo clock. They snatch it away before it can slide back in while scavengers scoop out my liver, kidneys, and brain, leaving me a hollow shell.

I spend the entire next day being anxious. It’s all I have time for.

At night, I set the alarm to wake up so I can take my vital signs – make sure they’re still vital. I drink water so I’ll have to get up to pee, to know I’m still alive, like my father’s corny riposte whenever he received an early morning phone call:

“No, you didn’t wake me. I had to get up to answer the phone.”

At 5:00, I’m wide awake, so I go to my office to stare at the books on the shelves. No longer the comforting and treasured friends I usually think of them, now they stand there and seem foreboding, as if they are taunting me with their solid longevity. They will out-live me. I may not get to read them all! Just yesterday I washed the cat’s bowl and now it’s the next day, already time to wash it again. Phoebe sits in the hallway, licking her paws, all of her purported “nine lives” intact.

I need to learn more about heart disease, specifically cardiac surgery, so I spend the afternoon consulting the experts – Dr. Google and Professor Wikipedia. They provide lots of information, some of it reliable, some not, and have terrible bedside manners. I consider myself somewhat of an expert on Bad Bedside Manner
(BBM)
because I have seen it all – and not just from doctors. The winner of the Worst
BBM
Award might be the radiologist who reviewed my patient’s
CT
scan. A brain tumour was suspected, or possibly a cerebral bleed. “Is it serious?” the patient asked. “Yes,” the doctor answered and then walked out of the room. The patient and I looked at each other in disbelief. A runner-up was the surgeon who came to speak to the parents of a twenty-year-old man. “Bad news,” she said. “The pancreas is dead.”
(FYI:
When speaking to families, the word
dead
should rarely, if ever, be used, especially when it is the
patient
who is dead.)

But in a way, bedside manner can be overrated. There’s a specialist I know who is a superb diagnostician and an unerring clinician but is cold and impersonal with patients, arrogant and supercilious with everyone else. She has a chronic case of
BBM
. On many occasions after she’s spoken with patients or their families, I have had to smooth things over or do damage control. On the other hand, if I ever get a disease related to her specialty, I will be running to beg her to be my doctor. Ideally, you’d get the whole package, but if I have to choose, I’ll overlook
BBM
in a good doctor.

I tried to explain this to a friend who needs knee surgery and has been shopping for an orthopedic surgeon he can bond with. “I can’t find the right one,” he complains. “They’re all carpenters. None of them takes the time to get to know me as a person. They just tinker with nuts and bolts.” But a carpenter is exactly what you need! I tell him. A surgeon who is an expert craftsperson will fix your problem and make it work like new. If you want a friend, go somewhere else. Skill is what’s needed, and when you get the personal touch on top of that, consider it a bonus.

No, there’s not too much hand-holding going on in hospitals these days. Doctors may offer some in passing, but they tend to “come and go, talking of Michelangelo,” a line from a T.S. Eliot
poem that perfectly describes some doctors’ detached, scientific stance. Whatever they offer in the way of comfort or encouragement is appreciated, but nurses are in a position to offer emotional support more intimately, consistently, and around the clock. (Whether they do so or not is another matter. We all know of cases when a nurse’s anticipated Tender Loving Care turned out to be a Total Lack of Concern.) I guess I tend to cut doctors more slack about their
BBM
because they aren’t usually at the bedside all that much. In the hospital, doctors typically spend a few minutes with each patient during the day (if at all) and rarely at night. It’s nurses’ bedside manner that is going to make it or break it for a patient.

By late afternoon, anxiety has overtaken me. My mind is spinning out of control, conjuring up more and more things to worry about. Frantically, I call Mary again.

“I’d be the same way,” Mary says, “any nurse would.”

By day and by night, I surf the net. Serendipitously, I discover that my obsessive behaviour is a diagnosis itself: cyberchrondria. I have decided to apply a few filters to my searches to avoid ramping up my terror more than necessary. I’ll stick with reputable, evidence-based websites, and as for personal accounts, I won’t read tales of fatal errors and screwups, botched jobs, horror stories of misdiagnosis and malpractice. I am able to interpret what I read, but what if I couldn’t? A hockey mom on Max’s team told me that after searching “heartburn” she diagnosed herself with acid reflux disease. When she went to her doctor, he said her upset stomach was a side-effect of an antibiotic she was on. A little knowledge can be a misleading, if not, in fact, a dangerous, thing.

Internet-surfing madness can take over if you don’t use the information you glean judiciously. You have to make sure not to disproportionately emphasize some facts and overlook others.
You have to be able to glide appropriately from the general to the specific, from the theoretical to the concrete, and back again. Time and again, I have seen patients fall into these traps because they don’t how to process certain information and understand how it relates to their specific situation.

But thankfully the days are long gone when doctors had the monopoly on information and were thought to own the knowledge and have all the “answers.” Most doctors want to collaborate with patients, to forge a partnership, but too many patients confront doctors with bits of information, demands for tests or procedures, or raise objections to doctors’ advice based on partial or inaccurate knowledge gleaned from the Internet. I’m going to try not to make this same mistake myself.

The first thing I learn in my Internet search is a loud wake-up call: heart disease, including coronary artery disease and other diseases related to the heart (such as valve problems), is the leading cause of death in North America. I am not alone.

Next, I review the heart’s anatomy, its conduction system, and structures such as the arteries that supply its blood flow and the valves that control it. The aortic valve is one of four, in addition to the mitral, tricuspid, and pulmonic, and is positioned in between the left ventricle of the heart and the aorta, which sends oxygenated blood to the rest of the body, including the brain. Many people (1 per cent to 3 per cent in the sixty-five to seventy-five age group) develop calcified aortic valve stenosis (or narrowing) over time, but the most common congenital heart abnormality is exactly what I have – a bicuspid aortic valve. A normal aortic valve has three flaps, mine has only two. Over time, the irregularity becomes calcified, stiff, and constricted.

Then, echoes of the pediatrician’s words: “Aortic stenosis carries a high risk of sudden cardiac death, especially when the
ejection fraction is less than 35 per cent.”
Mine is 30 per cent!
A normal ejection fraction is 50 per cent to 70 per cent; it represents the portion of blood volume ejected from the heart with each heartbeat.

As for second opinions, in my particular case, there is a consensus. If left untreated, my heart condition will only worsen. “Once a patient becomes symptomatic, the likelihood of sudden death within a year is more than 50 per cent.” Furthermore, cardiac arrest in the patient with aortic stenosis resists all resuscitation attempts. (Well, sudden death has got to be preferable to the slow, tortuous deaths I’ve witnessed in the
ICU
. Here’s my chance to find out.) There is no medical treatment for my condition, only surgery will correct it. Want to know the most common risk factor in heart disease? It’s denial. (Sound like anyone you know? I guess I’m not in denial anymore.) “Without surgery, three-quarters of patients die within three years of symptom onset.”

But there’s good news, too: “Surgery restores a normal life expectancy and improved quality of life in the majority of patients.” And there’s a great deal of comfort to be found in the patient blogs that offer information, companionship, and commiseration. Reading other people’s posts, I feel part of a supportive community, even though their stories range from reassuring to disturbing. There are inspiring accounts of patients who’ve gone on to run marathons and climb Mount Everest alongside reports of debilitating cardiac depression and post-traumatic stress syndrome in which they experienced disturbing flashbacks and nightmares post-operatively. Sprinkled throughout are interesting tidbits such as the blogger who received a pig heart valve from a surgeon named Dr. Swineheart (!), a chatroom group discussing the challenges of finding a comfortable bra after cardiac surgery (front-closing is best), and a posting on eBay (with several
bids) for a prosthetic heart valve – now that’s extreme
DIY!
I discover that California governor Arnold Schwarzenegger had a valve replacement – ditto for hockey player Teppo Numminem, a defenceman for the Buffalo Sabres who now, a year after his surgery, is back on the ice, re-signed with the team.
^*
Another interesting factoid: my clever strategy of stopping to chat or feign interest so that I can catch my breath is a compensatory mechanism called
schaufenster shauen
, apparently used by many ingenious cardiac patients!

Everything I read corroborates what Dr. Drobac told me, but I know sometimes doctors withhold information so as not to worry patients. “Don’t ask, don’t tell” can be their
MO
. They may give a soft spin, keeping back certain details. But the Internet doesn’t hold back. It lays it out there in a harrowing onslaught of
TMI
– Too Much Information. It makes me waver between thinking, “Ignorance is bliss” and “Knowledge is power.” I’ve gone from wanting to know nothing to devouring as much information as possible. The more I read, the worse I feel, yet I forge on, trying to stay on reliable, evidence-based sites.

Other than Mary, I don’t feel ready to tell anyone else – especially not Vanessa, who is also a very close friend but coincidentally is dealing with her husband’s heart problems right now. Steven’s heart was damaged by radiation he received years ago for cancer. I don’t want to add to her worry, yet I knowingly added to his when I visited him in the hospital a few months ago.

“I have something wrong with my heart, too,” I blurted out, suddenly compelled to share my secret with him, feeling certain he would understand.

“Take care of it,” he said. “You have something that can be fixed.”

Not like me
, he didn’t say. That was two weeks before Max’s ear infection, which has long since resolved. Needless to say, my problem hasn’t, nor has Steven’s.

As for other friends, I can’t tell them. Robyn will worry and Joy will be critical and unsympathetic. For years, she’s been nagging me to take better care of myself. She goes for annual checkups, watches her weight, exercises, and is always popping vitamins and supplements to improve her “wellness.” Nine years ago, when we both turned forty, she had a bone scan, a colonoscopy, and a mammogram. The results were normal, but she still keeps shopping around for new doctors who will do more tests and is constantly jonesing for more medical procedures and blood panels.

“You’re abusing the system. Our health care system is in dire straits because of you,” I tease her, but she points out that it’s only responsible preventive health care and I can’t argue with that.

By the afternoon, I am positively google-eyed so I take a break. In a fleeting interlude of sanity, I review my “past medical history” (the inane redundancy reminding me of my father’s oft-repeated comment: “Where else would history be but in the past?”) Believing that most things get better on their own, I rarely go to doctors. Most nurses are like this. We’re level-headed, pragmatic, generally optimistic types who don’t tend to think the worst. We’re more likely to take things down a notch, not jump to the conclusion that a cough is pneumonia or a headache a brain tumour. We brush these things off, saving ourselves for the real, big-time problems. Maybe it’s because we’ve been exposed to medical problems that are so much worse that we are grateful for everyday aches and pains. In fact, most of us have a rather skewed perspective because of our work. There are times when I’ve been in a group of people at a concert or on the subway and look around in amazement, marvelling
that none of them are intubated, unconscious, or hemorrhaging.
Wow, most people are healthy
, I am reminded.