Thriving With Heart Disease

The Leading Authority on the Emotional Effects of

Wayne Sotile, Robin Cantor-Cooke

• Publisher: Atria Books
• Year: 2010
• eBook ISBN: 9781439135570
• Topic: Medicine
• Subtopic: Diseases & Allergies

"Not only can you survive with heart disease, you can actually thrive with it for many, many years. If you cope well and follow the advice I give you in this book, you can live as long as you would if you didn't have the illness."

-- from Chapter One, "Begin the Journey"

In this landmark volume, Wayne M. Sotile, Ph.D., breaks the story that every heart patient needs to know: In many cases, it's how you deal with the illness and not the condition of your heart that will determine how completely you recover, or if you recover at all. If you're one of the 61 million Americans diagnosed with heart illness -- whether you've had a heart attack, high blood pressure, angina, or surgery -- the program in this book can extend your life and might even save it.

Many books have dealt with the physical aspects of cardiovascular illness, but Thriving with Heart Disease is the first to offer patients and their loved ones a program for coping with the emotional and psychological side effects that can ravage relationships and throw families into disarray. Dr. Sotile's extraordinary success with cardiac patients attests to his belief that living with heart disease is not a temporary adjustment but a journey you take one moment at a time toward the healthy life you were meant to live, surrounded by the people you love.

Based on the experiences of thousands of patients at Wake Forest University's Cardiac Rehabilitation Program -- the nation's first mind-body center for living well with heart illness -- Dr. Sotile's program provides step-by-step instructions on how to establish a robust, new normal life for you and the people you care about, whether you're a parent with young children, a mature adult with grandchildren, or a single man or woman whose family is a devoted network of friends.

Written with warmth and humor and filled with news of the latest research into the links between heart and brain, body and soul, Thriving with Heart Disease is the book that every heart patient needs to read. It's not a diet book, an exercise book, or a cookbook. It is the first self-help manual to guide heart patients and their loved ones through the psychological side effects they're likely to experience and onto the path to vibrant, new normal lives.

PART ONE

CONGRATULATIONS ON YOUR HEART ILLNESS—YOU GOT A SECOND CHANCE!

Chapter One
BEGIN THE JOURNEY

I am a cardiac psychologist. For nearly twenty-five years I have been helping people recover from heart disease by teaching them and their loved ones how to contend with the emotional ravages of the illness. This book is the fruit of countless hours I’ve spent with thousands of heart patients and their families—men and women like you, with loved ones like yours. My message will knock your life back onto its feet because I’m going to tell you something about heart disease you may not have known before: it’s not the severity of the illness but how you cope with it that will determine how long you will live and how happy you will be.¹ Not only can you survive heart disease, you can actually thrive with it for many, many years. In fact, if you cope well and follow the advice I give you in this book, you can live as long as you would if you didn’t have the illness.

That’s right: you can live as long as you would if you didn’t have the illness. And you can lead a full and vibrant life, a life of challenge and discovery. You don’t have to live like an invalid, propped up in a corner of the couch while your days diminish into a series of bland, limited routines. You don’t have to tiptoe through your nights and days, anxious that a backfiring truck or a spin on the dance floor will throw you into the hospital with a heart attack. And you don’t have to suffer from New Age guilt because you couldn’t swallow the diet of the month or stick with the latest exercise fad.

What you do have to do is acknowledge the gift you’ve received: the infinite bounty of a second chance. The fact that you are holding this book and reading these words confirms your place among the privileged, the lucky ones who got the wake-up call, resisted the urge to slam the snooze button, and chose to embark on the journey toward a newly conscious life. Because living with heart disease is a journey—a journey forward toward the healthy life you were meant to live, not back to the one you were living when the illness struck. It’s a journey you take one moment at a time—breakfast by breakfast and conversation by conversation, embrace by embrace and, yes, conflict by conflict. It’s a journey you’ll be taking for the rest of your life—which, I remind you, can be a long, long time—and the people who love you the most get to come with you.

That’s the thing that astonishes so many of my patients: the degree to which their illness is a family affair. Heart disease can cause a seismic shift in even the most stable relationships, rattling a family’s foundation and leaving its members shaky and grim. It’s always unsettling but worst when the illness strikes without warning, which happens more often than you might think: All known cardiac risk factors combined account for only three out of four cases of heart illness—the others are attributed to unknown causes.

If you are like most heart patients, your notion of normal changed forever the instant heart disease invaded your world. Suddenly, nothing was the same for you or your family, and everything ended in a question mark:

Am I going to die?

Why did this happen to me?

What happens now?

How will we manage?

Will things ever be the same?

You all probably have had to deal with unfamiliar people (doctors, nurses, rehabilitation specialists, technicians), unfamiliar places (hospitals, waiting rooms), and unpleasant experiences (procedures, tests, surgery). How you manage these experiences—as a patient and as a family—will determine the quality of your life and how long you hold on to it. Thriving with heart disease isn’t only about a muscle, it’s also about how you manage your emotions, your attitude, and the intricate web of human connections, secure and tenuous, that bind you to the people you love and interact with.

And thriving doesn’t stop with family relationships: the way a patient interacts with others can determine how long and happily he or she will live. A married loner with no close friends, few acquaintances, and a not-very-serious heart condition may never recover fully, while a quiet person who lives alone but has vibrant friendships and cordial family relations may resume an active life even after a whopper of a heart attack.

That’s what pulled Rena and Tom through: strong family relations. The topography of their marriage had changed forever three years earlier, when Rena suffered a myocardial infarction, or heart attack.

Tom stands well over six feet tall, weighs about 230 pounds, and has one of those steel gray crew cuts that makes some men look like unusually mature marines. They had come to my office to talk about how they as a couple were living with heart disease. As Tom rose from the waiting room chair, he offered a large, open hand to Rena. I was struck by her presence; her handshake was as firm as her gaze. Tom spoke first:

“It was simple: I knew Rena was going to die. I was so frightened of losing her, I didn’t even allow myself to think she might pull through. I just wanted to try to prepare myself for the worst, so if it happened, it wouldn’t be a complete shock.

“In the hospital, I just waited and waited for her to open her eyes. I kept wondering, why did this happen? Rena’s family didn’t have heart problems. I thought it must be a mistake, that they’d made the wrong diagnosis. The kids came every day, they took off from work … we surrounded each other with love; that’s how we got through.

“Rena made it over the first hurdle—she got out of the hospital. Then we had another surprise—coming home. Boy, those first few months were a shock. At first I tried to do everything—the cooking, the laundry, the marketing, everything. Then, later on, I slowly let her take over, little by little.”

Now Rena looked up and began to speak:

“The first six months were the worst. Some mornings I’d wake up not caring about anything. One day, I didn’t even fix my hair. I remember thinking I must be losing my grip; I’d always paid attention to my appearance. But I figured, what’s the difference? I wasn’t going anywhere, no one was going to see me except Tom.

“I also worried that I couldn’t rely on my body anymore. One day I needed a blanket up in the linen closet, and I was afraid to get up on a step stool to get it down. I thought I’d lose my balance and fall—off a step stool, for goodness’ sake! So I sat down on the floor and cried for half an hour.

“And then there were the panic attacks. Whenever something felt different in my chest area I immediately thought, oh, no, something’s happening—another artery is blocking up, and I’m going to end up in an ambulance. For a few months, I was a nervous wreck.

“Tom and the kids were very worried about me. They didn’t let me do anything, even things I wanted to do. One Sunday I got it in my head I wanted to clean out the pantry. It was the first time in weeks I’d felt like doing anything, and it made me happy. The kids were over that day, and, well, they wouldn’t let me do it. The more I insisted, the more they fought me. I finally gave up and went to lie down, and Tom and the kids cleaned out the pantry. It took me three weeks to find the oregano because they put stuff back in the wrong place.

“Here they were, trying to spare me from stress and causing me so much aggravation I had to go lie down. I loved them for all they were doing, but I knew I could do more than they thought I could—especially everyday, normal things.”

As Rena and Tom learned, the future is seldom determined at the hospital. The vast majority of heart patients’ futures develop gradually, like photographs in processing solution, as they return home and get back to normal—a normal that may be a far cry from what they knew before. And that’s precisely the point: when heart illness strikes, a person must abandon the well-trodden path he or she used to follow, blaze a trail, and begin a journey toward a new way of living. Heart disease is an invitation to create a different way of life—a new normal—that heals the heart by tending emotions and mending human connections.

As Tom put it, “We’ve been married for over forty-two years. We’ve grown up a lot in that time, and we’re still growing. Living with this illness has taught us to keep things in perspective, to be more flexible, and to pay attention to each day we have together. When you do that, life gets better. You know how, early in marriage, sex is such a big deal? I still love sex; it’s great. But intimacy is greater.”

STARTING THE JOURNEY

Living long and well with heart disease is like driving cross-country to get home for Thanksgiving: it’s a long haul, but the party will be a lot better if you’re part of it (also, once you’re on the road, you’ll realize you’re not the only one out there). You’ll have long stretches where you fly along, making great progress, but you’ll also hit detours and obstacles that make you wonder if you’ll ever arrive.

I promise: you can and will arrive if you follow the program in this book, which places in your hands the same tools and techniques my patients receive at the Wake Forest University Cardiac Rehabilitation Program. Your program starts now, as you open your mind and embrace two fundamental truths: first, that recovery is a journey you’ll be taking for the rest of your life, not a signpost you rolled past when you left the hospital. And second, that heart illness will challenge you and the people close to you to open yourselves to one another as never before—even when you feel incapable of a civil “good morning”—and you must rise to the challenge and do it.

I know you can do it because I’ve watched others do it time and time again. Heart patients are my life’s work, and this book is the crystallization of my commitment to you, your family, and your future. For many years I have wished I could hand my patients a talisman, a potent object that would keep them from harm and protect them from despair. This book is that talisman, a gift of hope to help you and your family defy the demons of heart illness and win.

I have changed the names of my patients to preserve their privacy; some case histories are composites of several patients.

Chapter Two
THE FOUR STAGES OF HEART ILLNESS

As heart patients recover, they pass through a series of separate, identifiable stages. The stages don’t always proceed neatly in sequence, but your recovery will have fewer surprises if you are familiar with them and know what to expect.

Here is how the stages progress for most patients and their families:

Stage I: Surviving the crisis. Illness strikes and patient and family begin the journey.

Stage II: Creating a coping strategy. Everyone starts to grasp what heart illness is, what’s involved in treatment and recovery, and that the patient and family must work as a team.

Stage III: Handling the homecoming blues. You’re suddenly on your own; reality sets in and the team must adapt to its new normal.

Stage IV: Learning to live with heart disease. Patient and family have accepted the diagnosis and committed themselves to living with the illness, not in spite of it.

Let’s explore the stages one by one.

STAGE I: SURVIVING THE CRISIS

Each patient gets the news in a different way: One may be sitting in her doctor’s office, stunned by some test results she hadn’t given much thought to; another may land in the emergency room feeling as if a five-hundred pound gorilla is sitting on his chest. However the news arrives, it hurls you into strange, forbidding territory, and your journey begins.

When the crisis hits, most heart patients and their families put their lives on hold, band together, and try to help one another endure. Petty conflicts are swept aside by a wave of concern for the patient and fear that he or she may not survive. Family members summon reserves of emotional fortitude and reinforce one another with love.

If you’re the patient, this wait-and-see period feels as if your future has been torn from your hands and become the property of medical professionals. It’s also a time when feelings of helplessness can overwhelm you. You may no longer trust your suddenly unreliable body. Family members also feel helpless as they stand by, waiting for information, hunched with worry.

In the midst of all this vulnerability, it’s common for patients and their families to relinquish their autonomy and entrust themselves completely to the physicians and hospital staff. While it’s important to trust the people taking care of you, it’s also crucial that you maintain your authority and see to it that you’re treated as a whole human being and not a set of symptoms. As I’ve mentioned, thriving with heart disease involves both muscle and mind, and all too often, the psychological aspect of healing is overlooked. There are even some cardiologists who dismiss the notion that mending the mind can help heal the heart. This is why you must see yourself as your physicians’ partner, not their child. In the words of Melvin Belsky, M.D., “It’s not enough for the doctor to stop playing God—you’ve got to get off your knees.”

The big story here is not only that assertive patients and family members get better care from physicians, but that heart patients must be assertive to get the care they need. It’s not enough to show up at the doctor’s office or emergency room; that’s no guarantee you’ll be properly cared for. You must hold fast to your independence, trust your instincts, and assert your right to be treated well—both medically and personally.

This means having the confidence to ask a physician to explain what he or she is saying, ordering, or prescribing, and also to express your wishes. If you feel a physician (or anyone else, for that matter) has been rude or disrespectful or that his or her personality displays an arrogance that is compromising the quality of your care, don’t put up with it. Let people know how you would prefer to be treated.

Even something as common as being called by your first name when you’d prefer a less familiar form of address is worth dealing with. Young professionals grew up in informal times, calling teachers and sometimes even parents by their first names. When they don their medical coats, they don’t always make the leap to those more traditional shores where many of their older patients stand. If it irks you to address thirty-five-year-old physicians as “Doctor” while they assume they may call you by your first name, let them know how you’d like them to address you.

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EXPERIENCE MATTERS!

If you’ve survived a myocardial infarction (MI, or heart attack) and have a doctor who treats a high volume of MI patients, you are more likely to be alive a year later; a 2001 study found a significant difference in survival rates for patients treated by physicians who treat more than twenty-four MI patients per year versus physicians who treat fewer than five...

Table of contents

• Cover Page
• Title Page
• ACKNOWLEDGMENTS
• CONTENTS
• FOREWORD
• PART ONE CONGRATULATIONS ON YOUR HEART ILLNESS—YOU GOT A SECOND CHANCE
• PART TWO THE DOCTOR IS IN SPECIAL SESSIONS
• AFTERWORD
• APPENDIXMEDICATIONS
• RESOURCES
• NOTES
• INDEX
• Permissions
• ABOUT THE AUTHORS