While binge-watching Season 4 of Grace and Frankie on Netflix the other day, I heard Frankie’s sweetheart, Jacob the Yam Man, trying to calm her down with a statement that has proven to be very true for me since my heart attack:
“You’re not always going to feel the way you do today!”
I think I’ll go embroider that on a pillow. . .
During the early days and weeks after I was discharged from the hospital, I was a train wreck. Worse, I was unable to envision a future that could possibly be any less bleak for me.
I’d been misdiagnosed in mid-heart attack in the Emergency Department (“You are in the right demographic for acid reflux!”) by a man with the letters M.D. after his name. I’d suffered worsening textbook symptoms that I was trying to ease by chewing Tums and Gaviscon. I was finally appropriately diagnosed in that same Emergency Department/different doctor (“I can tell from your T-waves and other diagnostic test results that you have significant heart disease”!) My ongoing post-heart attack chest pain had not yet been diagnosed as coronary microvascular disease. Two heart conditions for the price of one. And now I was back home, recovering after my hospital stay and trying desperately to make sense out of something that made no sense to me. Unlike cancer patients who fear the external evil that has invaded their bodies, heart patients like me can suddenly fear the danger that lives within.
Dr. Stephen Parker, a cardiac psychologist in Alaska and survivor of several heart attacks himself, described his own reactions to his first heart attack as “swirling emotions”:
- relief at survival
- disbelief and anger that it happened
- grief for everything that was and will be lost
- gratitude to those who helped
- extreme vulnerability in a previously safe world
- fear of what the future might bring
For an active healthy person like me, suddenly facing those “swirling emotions” felt horrible. And exhausting. If anybody had sat me down then and told me “You’re not always going to feel the way you do today!”, I would not have believed them.
The freshly-diagnosed patient often goes from the shock of being hospitalized to the shock of being sent home before we’re feeling quite ready to return there.
I’d been cared for in a world-class hospital by expert cardiac professionals whose 24/7 job was to take good care of me and my heart – but once I got home, every twinge in my chest (“What was that? Is it something? Is it nothing? Should I call 911?”) now felt like a warning siren, alerting me that a second heart attack was imminent. Inside, I knew with a cold dark certainty that I was likely going to die. Probably tonight.
I became so convinced of my imminent death that I somehow lacked the ability to make plans.
Dr. Stephen Parker describes this odd phenomenon as a foreshortened future, a frequently observed element of Post Traumatic Stress (which turns out to be surprisingly common among recently diagnosed heart patients). In other words, after a traumatic cardiac event, the patient “’no longer expects to have a career, marriage, children or a normal life span.” I instantly identified with Dr. Steve’s own story:
“Three months after the heart attack, I went to Home Depot to buy something for the house. I walked inside, saw the plethora of nice things to make a nice house, and started feeling extremely depressed.
“What was the point? I knew I was going to die within a short time.
“I walked out without buying anything. I could hear a critical voice in my head repeating: ‘Get over it.’ But I could no more get over it at that point than I could fly to the moon. (Which is about where my mind and soul were hanging out). There is nothing like the sense of a foreshortened future to un-motivate behavior.”
Many of those “swirling emotions” I was feeling in those early days were overwhelmingly tied to the new and strange physical changes I’d never experienced before. After I was discharged from the hospital, I experienced crushing fatigue, for example. Even taking a shower now required a 20-minute lie-down afterwards to recuperate. I had to lean on my son Ben’s arm just walking slowly to the corner and back. I needed to take naps! What was happening to me? And when would I get the old ‘me’ back?
I often recall the bizarre habit I developed back then of tidying the apartment every night before bedtime – taking out the recycling, shining the taps, sweeping and mopping – so that if I died overnight, the place would look good when the paramedics came to collect my corpse in the morning. Night after night, week after week, I was preparing for my own death.
Much of what I was going through (and what Dr. Steve captured so eloquently in his writing) may still seem unfamiliar to our cardiologists. Cardiologists are the ones who complete a successful cardiac procedure, then move swiftly on to the next patient in need of care. And our“swirling emotions” are not what cardiologists are trained to focus on anyway.
Cardiologist Dr. Sharonne Hayes, founder of the Mayo Women’s Heart Clinic, once described her colleagues’ response to psychosocial symptoms in their heart patients like this:
“Cardiologists may not be comfortable with ‘touchy-feely’ stuff. They want to treat lipids and chest pain. And most are not trained to cope with mental health issues.”
Nobody expects cardiologists to act as psychotherapists for heart patients. But cardiologists know – or should know- that new onset anxiety or situational depression hurts so many heart patients once they get home. We know that heart patients who feel anxious or depressed are less likely to take their medications, exercise, attend Cardiac Rehabilitation, quit smoking, eat heart-healthy meals, or follow any other ‘doctor’s orders’ to help prevent another cardiac event. See also: When Are Cardiologists Going to Start Talking About Depression?
We also know that how patients are discharged from the hospital has far-reaching effects on recuperation, yet despite this, “hospital discharge summaries are often poorly constructed, incomplete, delayed, misdirected or unhelpful.”(1)
How we can stop feeling the way we do. . .
It can be surprising to newbie heart patients when they meet other heart patients who are walking, talking and NOT looking like death warmed over.
They are reminders that our diagnosis need not permanently define us. One of the most common sentiments expressed by my Heart Sisters blog readers is some version of “I thought I was the only one. . .” (One woman even wrote: “OMG! Are you ME?”) What she was really expressing was the relief we feel when we realize that there’s a whole community of people out there who have already gone through what we’re now experiencing. These people can often understand far more deeply what that patient experience is like than our family or friends or even our doctors.
Find those people. Learn their stories. Pick their brains. A good resource for women living with heart disease is the online support community called WomenHeart Connect hosted by WomenHeart: The National Coalition of Women With Heart Disease. This site was a lifesaver for me in those dark early months, post-hospital discharge in 2008. Membership includes over 60,000 women around the world who, like you, have also been diagnosed with heart disease. And if you’re a heart patient here in Canada, check out the list of online peer support communities and resources on the University of Ottawa Heart Institute’s Canadian Women’s Peer Support Heart Hub site.
Researchers in Spain who have studied the four predictable phases of cardiac recovery report how patients describe moving into this later phase(2):
“We become more clearly aware of what has happened to our bodies, so are able to become more active in quality-of-life planning for our own future. We cannot do this planning until we reach that important awareness phase. We can now accept a “patient identity” as merely one of the many features in a person’s life – NOT the only or even necessarily the most meaningful feature. We can start to imagine and create future goals. We’re more effective at information-seeking. We begin to see our healthcare professionals as allies now, and ourselves as active members of a larger care team.”
The truth is that no matter how bad things are right now, our feelings do inevitably begin to change. (Even Dr. Steve was likely able to go shopping at Home Depot again). This change doesn’t magically bring rainbows and sunshine; it just means that the way we’re adapting to this diagnosis over time feels less raw.
And as I wrote in my book (A Woman’s Guide to Living with Heart Disease, Johns Hopkins University Press):
“In my experience with heart disease, I learned to cope with crisis by coping. I learned to adapt to crisis by adapting. I learned to roll with the punches because, like most of us, I’ve practiced rolling with so many figurative punches during my life.
“It’s not because I needed this crisis to become a better person and not because the diagnosis itself was some kind of a gift, but because human beings have a remarkable ability to adjust to almost anything in life.”
As those early weeks and months passed, I eventually began to realize that, despite the bleak sense of perpetual dread that had enveloped me at first, I was still alive! Indeed, weeks and months had passed and I had not died as anticipated. I had to learn to stop ruminating about all of the scary “what ifs?” that were part of my own “swirling emotions”.
I eventually stopped cleaning the apartment every evening in preparation for dying, and instead I tried to focus on living. I reminded myself, as Jacob the Yam Man assured Frankie:
“You’re not always going to feel the way you do today!”
1. H. Newnham et al. “Discharge communication practices and healthcare provider and patient preferences, satisfaction and comprehension: A systematic review.” International Journal for Quality in Health Care, Volume 29, Issue 6, October 2017, Pages 752–768.
1) G. Graffigna and S. Barello, “Spotlight on the Patient Health Engagement model : a psychosocial theory to understand people’s meaningful engagement in their own health care.” Patient Preference & Adherence, 2018 July 19; 12:1261-1271.
Window image: Geralt, Pixabay
NOTE FROM CAROLYN: My book, A Woman’s Guide to Living With Heart Disease is available at your local library or favourite bookstore (please support your local neighbourhood shops!). You can also order it online (paperback, hardcover or e-book) at Amazon – or order it directly from Johns Hopkins University Press https://www.press.jhu.edu/books/title/11800/womans-guide-living-heart-disease (and use their code HTWN to save 30% off the list price).