Shortly after I was freshly diagnosed with coronary microvascular disease (MVD), one of my readers told me that, for the past 12 years, she too had been living with MVD after surviving her own “widow maker heart attack”, just as I had. Immediately picturing the future prospect of somehow coping with ongoing bouts of exhaustion, shortness of breath and debilitating chest pain, my surprising gut reaction was:
“12 years!? TWELVE YEARS?!?!?! I can’t do this!”
Well, Happy Heart-iversary to me: on May 6th this week, exactly 13 years have passed since my initially misdiagnosed heart attack was finally correctly diagnosed and appropriately treated, but even more amazing to me, I’ve now lived with MVD for 12 of those 13 years. . .
A date that had seemed utterly impossible to envision when that reader wrote to me had somehow come to to pass. Twelve years. I am still alive. And I’m moderately shocked to be here writing this.
From the time I was discharged from the CCU in May 2008 (the intensive care unit for heart patients), I have carried within me a sense of profound certainty. I felt certain that I would die. Probably soon. Most likely, tonight in my sleep.
Each evening at bedtime, I tidied the apartment, bundled up the recycling, cleared the countertops and wiped down the bathroom. I knew that if tonight was The Night, I’d want whoever discovered my corpse tomorrow to find it in a nice clean home. This bleak ritual went on for weeks, or maybe it was months, day after day, preparing for my own death. (The upside: the place had never looked so good!)
I didn’t ever mention this certainty to anybody at the time because I didn’t want to scare people. I didn’t feel afraid. I just felt resigned to my impending fate. I kept putting one foot in front of the other, quietly trying to make sense out of something that made no sense. As I wrote last week in When Heart Disease Wears a Smile, I knew that my entire family had been through so much dealing with the shocking news of my heart attack. I didn’t want to worry them further by appearing anything but fine, just fine. . . I can’t recall when I stopped this daily tidying ritual, but I suspect that it was when I was subsequently diagnosed with MVD and its associated bouts of crushing fatigue that worsened as each day wore on. And by then, I’d also noticed that I hadn’t actually died yet – despite my certainty that death was imminent.
Cardiac psychologist and multiple-heart attack survivor Dr. Stephen Parker once described a unique symptom of Post Traumatic Stress Disorder (which turns out to be shockingly common among recently diagnosed heart patients). The PTSD symptom he described is called “a sense of a foreshortened future“. In other words, after a traumatic event – in this case, a heart attack – 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.”
Don’t get me wrong, my heart sisters: I’m not considering doing anything to speed up my inevitable departure from this earth. But having spent 10 years watching a brilliant friend dying on the installment plan in a longterm care bed, incapacitated and helpless after a medical crisis, I can tell you flat out that this scenario is not for me. I’ve completed my Advance Directives and shared them with my family, my will is updated, and my Emergency Scope of Treatment documents have been reviewed with my family doctor.
What I learned during a decade of visiting my friend was that there are worse things than death.
My dear friend could have never predicted her own fate after a long and adventurous life, from studying at the Sorbonne in Paris during the German occupation to making friends with an American war correspondent named Ernest Hemingway. Long before her near-fatal crisis, she’d been a keen student of Canadian history, ballroom dancing, story telling, Qi Gong and so much more – well into her senior years.
I’m not afraid of dying. I’ve lived a remarkable life. There’s nothing on my “bucket list” left undone (and I don’t embrace or recommend bucket lists anyway). What I am afraid of is ending up like my friend – trapped in a body or a mind that no longer functions, while waiting helplessly for somebody to do a diaper change. She had been heroically rescued and resuscitated during her medical crisis after collapsing at home one morning, but many times during the following 10 years of our visits, she would tearfully whisper to me, “Every day, I wish they’d never found me in time to save me. . .”
I worked for many years in hospice palliative care, where my colleagues and I used to talk openly about death, and specifically about our own mortality. Because one of the biggest risk factors for a heart attack is having already had one, I believe that, if the statisticians are correct, my ongoing cardiovascular disease will likely be the thing that kills me. Although heart disease is the #1 killer of women, having a misdiagnosed “widow maker” heart attack didn’t kill me in 2008. (My cardiologist suspects my 19 years as a distance runner helped me dodge that fate, thanks to my collateral arteries – what doctors call “do-it-yourself bypass surgery.”) And my subsequent diagnosis of MVD hasn’t killed me. Yet.
Of course, I could also get hit by a bus tomorrow, thus thwarting the grim reaper’s plans. The moral, of course, is always the same: don’t leave words unsaid, wounds unhealed, or important things undone.
As our parish priest told my family after my Dad, a non-smoker, died of lung cancer at the age of 62, “None of us is getting out of here alive.”
New Jersey oncologist Dr. James Salwitz endorses that reality, too. He once wrote a compelling essay in response to an editorial in Lancet Oncology.(1) The medical journal’s editorial reported that during the 10 years between 2000 and 2010, “many new cancer drugs produced marginal extensions in survival and simultaneously increased risk of treatment-associated death and side effects.” These stats compelled Dr. Salwitz to write:
“A hundred years ago, the medical model was one of acute disease and trauma. The major events that threatened life were infection such as syphilis and tuberculosis, childbirth and accidents. Chronic illness was rare because we did not live long enough, as the average lifespan in 1900 was 47 years. Medical science therefore focused on measures to prevent and treat infections, make birth safer, and treat serious injury. This resulted in the rapid rise in life span to 70 years by 1950.
“Then the model of illness changed to that of extended diseases such as heart disease, dementia, diabetes and cancer, and research focused NOT on preventing these illnesses, but on treating their effects.
“This is a chronic illness approach where large numbers of patients spend the last years of their lives debilitated while receiving increasingly toxic and expensive therapy to draw out functionally limited lives. But this has increased survival only six or seven more years.”
Dr. Salwitz prefers what he calls a modification of the present life-disease cycle, which, instead of focusing on deterioration in the last years of life, targets the prevention of disease during healthy youth.
“In other words: live a healthy life to, say, 90 – and then die quickly. Theoretically, this would produce a net longer lifespan and a higher functioning level with less suffering.”
I don’t know about the rest of you, but I’m drawn to this care model.
As a person living with a chronic and progressive illness, however, I suspect that, as Dr. Salwitz realistically predicts, I will continue to be “debilitated while receiving increasingly toxic and expensive therapy” in order to draw out my “functionally limited” life. Depressing, right? With each passing birthday, I notice yet another sign of that limited functionality that has nothing to do with being a heart patient. Last month’s birthday introduced me to something brand new: longstanding arthritis in my hands (now suddenly visible in my swollen knuckles) makes it impossible to open the child-proof pill bottles that my cardiac meds come in.
And here’s where that fear of a foreshortened future kicks in on overdrive: if I can’t even open my pill bottles anymore, what else lies ahead for me? Will I be able to lift the heavy watering can in my balcony garden? Pick up my grandkids? Lace up my own running shoes? Who could have guessed that it would be my FINGERS – and not my heart! – that kick off this sudden functional decline?
Meanwhile, for most of us – no matter what our specific diagnosis may be – I suspect that it’s simply a one-day-at-a-time regimen of taking our meds, fitting in exercise, meal-planning, talking to family and friends, resting when we need to, juggling medical appointments and learning to appreciate each sunrise for as many sunrises as we have left.
1. “First Do No Harm: Counting the Cost of Chasing Drug Efficacy.” The Lancet Oncology, Volume 13, Issue 9, Page 849, September 2012.
Image: Jggrz at Pixabay
Q: Has your own diagnosis made you contemplate your own mortality lately?
NOTE FROM CAROLYN: I wrote much more about making peace with your heart condition in Chapter 10 of my book, “A Woman’s Guide to Living with Heart Disease” , published by Johns Hopkins University Press. You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher (use their code HTWN to save 20% off the list price of my book)