Opening My Heart (35 page)

I fall back to sleep and enter straight into a nightmare of being nine months’ pregnant with a litter of puppies. The sound of them barking, clamouring inside me is what wakes me up.

I get up and go into the bathroom to step on the scale and I see I’ve lost ten pounds.

Lose weight the open-heart surgery way! The new diet sensation! Don’t try this one at home, folks!

The next morning, when the phone rings at the set time, on an impulse, I decide to short-circuit the system by punching in the “correct” responses to each question, regardless of the real answer, thus officially bringing to an end my relationship with the “e-nurse.”
Yay, I won!

I return to the recliner. I’m supposed to walk, increasing the distance each day, but I’m afraid to leave the house. I want a cup of tea, but it’s too much effort to get up and boil the water. The phone rings unanswered. The
TV
screen goes blank. (The kids have shown me how to fix it, but I can’t be bothered.) I bounce the pretty rubber ball Joy gave me and watch it careen off in random directions.

When Ivan gets home from work, he peppers me with questions. “How are you feeling? “How far did you walk?” “What did you eat today?” “What did you do today?”

Bad.

Not far.

Nothing.

What did I do today? I got up from the recliner to get the remote control where I’d put it on the kitchen table so I’d be able to report I’d done something.

Even Phoebe looks at me in reproach, her whiskers twitching.

“Are you having pain?” He holds out the bottle, poised to give me pills.

Yes. Not really. Kinda-sorta. Okay, I’ll take a few of those puppies. I had open-heart surgery, didn’t I? I could get more of them if I wanted. What doctor wouldn’t renew this prescription? But am I on the road to drug addiction, an intervention, then packed off to “celebrity rehab”? I had a neighbour once who had to go into detox to get off these painkillers. It could easily be me, too. I take two more and decide here and now to make these my last. Cold turkey. From now on, it’s over-the-counter painkillers only.

“You have to force yourself to do more each day,” Ivan says.

“I am trying.” I hate the whine of self-pity in my voice and hope he can’t hear it.

“It would help if you would be more positive.”

“I’m trying to be.”

“There’s no trying. Just
be
positive. You have so much to be thankful for. Stop feeling sorry for yourself and obsessing about your heart.” He stands over me, looking down at me ensconced on the recliner. “There are other things going on in the world. Like your kids, for example.”

Or his birthday a few days ago. Oh, by the way, Happy birthday, Ivan.

“You’re dragging yourself around like an old lady. You’re a young, vibrant woman. Let’s go for a walk around the block. You’ll feel better.”

I’m tired. It takes a lot of energy to feel this bad. I long for my bed. Is it time for bed yet? It’s only five-thirty in the afternoon.

“I think I’m depressed,” I say, staring off miserably into space.

“Oh no, not this again.” Ivan comes to sit beside me. “The problem with you is …”

That gets my back up. I brace myself.

“…  that you can’t deal with discomfort.”

Is that all you’ve got?
“Actually, I have a very high pain tolerance.”

“I’m not talking about pain. I said discomfort. You can take pain, you just can’t handle being uncomfortable. For you, that’s worse than pain.”

Yes, and I’m uncomfortable in my body and in my mind. For some reason, I think of the kids at camp. To them, feeling healthy and happy every day is like a right, the natural order of things. When they’re faced with even minor physical challenges, they feel affronted. Even as adults, when we get a cold, many of us have such meagre resources to cope. I thought I’d feel great by now, three weeks after surgery. I certainly expected I would feel better than ever after surgery and hadn’t anticipated such a long and arduous recovery.
Who knew?
I certainly never thought I’d be thrown into this state of intense and debilitating
discomfort
– a sensation that feels lodged in my soul and weighs down my neck, my forehead, right down to my toes.

I look at Ivan. He doesn’t entirely get it – maybe because he’s never felt this himself? He is all concern and caring, with a dash of impatience. I feel for him; it can’t be easy being around a depressed person. It’s, well,
depressing
. Thankfully, it doesn’t have that effect on him. Over our years together, he’s seen me through many ups and downs – upheavals that had nothing to do with weather, success or failure, work, love, or stress. I hardly understand it myself. Is depression created in the mind by destructive thought patterns?
A personal weakness? A learned behaviour? A genetic inheritance, imprinted in my
DNA
with an identifiable marker? Produced by faulty biochemistry? A spiritual quest? A moral failure? All of the above?

Ivan reminds me of what I have to be grateful for (it’s a long list), to be more positive (I will try), and to keep moving, walking every day (I am.).

“Maybe you should see your doctor,” he says. It’s a comment that surprises me because Ivan doesn’t usually give much credence to a problem like mine, a problem that looks like if you only tried harder and exerted more effort and self-discipline, you could shake it off and pull yourself together. If only this was a garden-variety sadness I could talk myself out of, or exert will power over, I would, but I’ve come to the conclusion that I can’t. It’s beyond me; this much I now know.

“The most important thing is for you to get started on a cardiac rehabilitation program,” Dr. Drobac says at my six-week checkup. In cardiac rehab classes, he explains, I will learn about a healthy lifestyle, how to reduce cardiac risk factors, and will have the opportunity to start exercising in a monitored, supervised environment.

Bo – rrrrringgg. Pshaw on cardiac rehab! Probably a bunch of old geezers in baggy sweatpants, attached to electrodes, strolling on treadmills
. More preoccupation with my heart. I want to put my heart problem behind me, throw off patienthood, and get back to being normal and
light-hearted
again.

Dr. Drobac recommends a particular program that is for women only. “Women have different needs when it comes to cardiac rehabilitation.”

“Like what?”

“For one thing, women have more stress, especially if they work
outside the home. They are looking after everyone else and don’t always take care of themselves.”

You got that right – it describes a lot of women I know.

Together we look at my
ECG
and echocardiogram results. He admires Dr. David’s beautiful handiwork and points out the significant improvements in my heart function. “You have a healthy heart now, Tilda,” he says, then sits down to work out some fateful arithmetic.

“Well, let’s see, how old are you?” He looks at the year of my birth in my chart. “You’re almost fifty, so let’s say fifty. You have a tissue valve and let’s say you get fifteen years out of it and in all likelihood you will. That takes you to sixty-five, then you can get a new valve and most likely have it inserted minimally invasive, by angiogram.” He reminds me about the single-dose blood-thinner tablet in development that simplifies anticoagulation. “It will be available by then and at that time you may opt instead for the mechanical valve, which will give you another twenty years, taking you to eighty-five or ninety. If you keep making healthy choices and take good care of yourself, you could live to a hundred.”

I like this hopeful math, but so much can happen. I’ve never taken anything for granted, much less now. He reminds me about taking antibiotics before dental work to prevent bacterial endocarditis, gives me the go-ahead to drive, discontinues the beta blocker because it is no longer needed (and agrees it may have caused the nightmares), but does want me to continue with the daily two tablets of low-dose aspirin, something he recommends for most women and men in my age group.

“How are you feeling?” He looks at me closely. “Depression is common after cardiac surgery,” he says, opening a door I refuse to enter, still clinging to the hope that I can fix myself by myself. As for the cardiac rehab classes, I turn them down, too.

[It’s time for another Public Service Announcement: Don’t do as I did, folks! A recent study has shown that patients who participate in cardiac rehabilitation cut their risk of death by 50 per cent due to changes in diet, exercise, and lifestyle.]

“What did the doctor say?” Ivan asks when I return to the waiting room.

“That my heart is working well and I should come back in six months.”

Ivan thinks this is wonderful news and of course it is, but he expects me to act like my old happy self so I fake it with a big smile. Maybe if I give him the “right” answers, too, like I did with the automated telephone questions, he’ll leave me alone. The moment we get home, I am wiped out and head straight for the recliner.

For the next few days I keep company with my chubby brides, pageant-bound tots and their obnoxious stage mothers, and the glamorous L.A. tattoo artist and her bad-ass entourage. Today on
Dr. Phil
, three sisters natter at one another about the distribution of their aunt’s will. “It’s a choice,” Dr. Phil says to them. “You can choose to put energy into feeling bad, into perpetuating all of this anger and negativity. Or you can stop it right now, in this very moment.”

Maybe that’s my problem. I have to stop the negativity – but how?

As the day wears on, stopping the negativity becomes even harder. I am sitting in my office, staring at my books, when I begin to feel my hearting thumping. It’s pounding. I take my pulse. Eighty at rest.
Too high
. Something is wrong. The worst possibilities crowd my mind. I take my pulse again. Eighty-four now. I pick up the phone and call Dr. Morse, who opens up an appointment for me right away.

“It looks – and sounds – like you’re having an anxiety attack,” she says the minute I walk in but examines me thoroughly to rule out any cardiac problems. We chat briefly and she asks me how I’m feeling, but all I tell her is “fine.” Calm and reassuring, she advises
me to come back tomorrow, but after seeing her, I feel better. When I get home, I call to cancel the appointment.

“I try to see what the bride sees,” says a
TV
-wedding consultant. “I had a bride who chose a strapless dress with a sweetheart neckline and mermaid skirt and it looked beautiful on her at the first fitting, but now she says, ‘It’s too much dress. It makes my head look tiny.’ She wanted it taken in all over. I didn’t agree, but I supported her decision because my job is to see things as she does. I am there to help the bride get what she wants, to help her have her perfect wedding and feel beautiful on her special day.”

Now that’s what I would call “bride-centred care”! Nurses have the exact same challenge – to see the patient’s perspective. Only then can we offer what is needed, not what we think is needed. Problem is, I can’t offer that same empathy to myself right now.

I flip to another channel, where a perky self-help guru advises, “Hug yourself. Smile, even when you don’t feel like it. Make a list of things that cheer you up.”

I try out these things, but they feel artificial and contrived. Even Max senses the ruse. “What’s wrong, Mom?” After school he comes over to sit beside me on the couch.

“Nothing,” I say, but I can’t fool him.

He tries to cajole me, picking up his old riff. “It looks like someone got up on the wrong side of Oprah’s couch.”

Determined to get a reaction, he tries again. “It looks like someone got up on the wrong side of the bestseller list!”

“Still working on your routine?” I ask with a weary half-smile. “It’s funny, sweetheart,” I say but can’t manage a genuine laugh or smile.

“Tough crowd,” he mutters as he goes up to his room.

–

Today I was reminded of the grandiose pledge I made to myself before my surgery to one day work toward better health care for all. But on the radio I heard a patient tell about how having to wait too long for radiation and chemotherapy caused her cancer to spread. She was forced to go to the United States for treatment there and feels the Canadian health care system has let her down. I can’t imagine the terror of not being able to get life – saving treatment. I can’t bear the thought of people not receiving the health care they need. It has never happened to me or any patient in my care, but the problem of inadequate resources and access to health care is real for some. But too often, the public evaluates the entire health care system on the basis of their singular experience, on how well their own needs were met. When patients say, “This is a good hospital,” they mean, they got better here, the doctor had good bedside manner, the nurses were nice, and they didn’t have to wait too long to be seen. How can we get beyond caring exclusively about our personal needs and move toward a consideration of what’s best for the kind of society we want to live in? Besides, why can’t everyone have great health care?

We can fix the problems: improve efficiency, ensure access, contain costs, reduce overcrowding in
ERS
, and improve wait times. New and expanded roles for nurses and other health care professionals could meet more peoples’ needs. More nurses – especially in the community and in people’s homes – would reduce costly hospital stays. Nursing isn’t the way to solve the problems, but it would go a long way toward a solution. Overall, we have a good thing happening here, but sometimes it feels like I’m the only one who thinks that way.

But even I would have had difficulty navigating the system if I didn’t know it as well as I do or didn’t have a family doctor to guide me through it. I would not have been able to interpret information
and would have been even more anxious about the hospital and the tests I had to undergo. Important details might have been missed. Maybe patients need someone like a wedding consultant to plan their hospital “event” – someone to listen to your concerns, field questions, quell jitters, make referrals, coordinate appointments, keep you on track. Being a patient is a big job to tackle all by yourself.