Heart disease within “the comfort of denial”

Like me, Allie is a heart attack survivor. In 2009, following  weeks of “normal” cardiac tests and some creative medical misdiagnoses (maybe it’s gall bladder? or dehydration?), the 52-year old ultimately  underwent triple bypass surgery. She was a thin and seemingly healthy mother of four, but she also had a significant family history of heart disease (her Dad had died of a heart attack at age 34, and her brother had survived heart valve replacement surgery 15 years earlier).  Since her heart attack, Allie’s now a blogger, too – usually describing her new plant-based  adventures in the kitchen.

I enjoyed reading one of her recent posts so much that I asked her if I could tell you about it here, too. This one’s not about heart-smart cooking, but about something cardiologists virtually never warn their patients about. 

It’s those day-to-day emotional changes many of us survivors live with, those swings between the good and the bad days, between feeling pretty darned good and then suddenly experiencing cardiac symptoms that are alarming enough to send us back to the E.R. in search of urgent medical care. These changes Allie covered – almost impossible to describe to those who aren’t living with heart disease – sounded eerily familiar to me.

On a “good” day, for example, I can almost forget (for small moments or even hours) that I’ve ever had any problems with my heart. But during a “bad” day of debilitating cardiac symptoms (like chest pain, shortness of breath and crushing fatigue), I am gripped with a pervasive cold terror that this might indeed be the Big One this time.

Is this something? Is it nothing? Should I call 911? It’s a truly frightening way to live.

Yet few if any health care providers warn heart patients about coping with these ongoing terrors. Once our coronary problems are “squished, burned, and implanted” away (as Kentucky cardiologist Dr. John Mandrola has called the heroic interventions  that doctors do to our hearts), we are duly booted out the hospital’s front door with barely a pat on the head and a brochure about heart-healthy eating.

Here, however, is what a real-life survivor actually lives with once home again, as Allie explains:

“Though heart disease is never far from my current train of thinking, I can easily live and breathe within the comfort of denial. I can forget in the blink of an eye just how scary it can be.

“I can move seamlessly between devastation and endless hope. I can latch hold of good days as if a bad day had never happened. This redefined living in the moment I considered – and consider still – a tremendous gift.

“However, when the not-so-good day returns, it is a jarring fall from the grace of momentary bliss. ‘Carpe diem’ can quickly turn to a not so magical ride on a carpet-of-impending-doom.”

After one recent distressing bout of severe symptoms after a relatively uneventful period of time, Allie’s cardiologist tweaked her meds until she described herself as “almost symptom-free again”.

But how does any heart patient know, given the singularly terrifying nature of heart symptoms (compared to, let’s say, the non-life-threatening but debilitating pain of a sore back or arthritic joints) whether chest pain means trouble, or is just yet another painful twinge that might be benignly meaningless? How many normal everyday activities can you trust yourself to attempt before being struck down by a frightening reminder to stop overdoing it? Once again, Allie explains:

“I live within the confines of an ever-expanding field of vascular limitation. My space grows bigger, slowly, gradually but surely.

“I push until I experience pain. Then I rest. If the pain subsides with a few seconds, I resume whatever I was doing. I can anticipate when this will happen. I know the limits and I push them gently but frequently. If I take longer to recover, I know I pushed too far. I constantly push the limits, but not foolishly. Slowly, very slowly over these three years I’ve progressed from not being able to brush my own hair to the daily walks we were now taking.

“Within these tried and true limits, I have been symptom-free. Only beyond these expanding walls, did I experience symptoms:  chest pain, sweating, back pain, throat fullness, jaw pain, shortness of breath and all the other strange sensations caused by narrowed coronary arteries and compromised blood flow.

“Needless to say, blogging about dietary efforts to reverse heart disease was not my focus right then. Instead, had I blogged my real thoughts, I might have written about the anger I felt or the fear or the depression that tried to grab hold of my mind. I could have written about my fear that the recent months of feeling so much better were over forever.

“So, instead of blogging or writing at all, I busied myself with other things. I continued to walk almost every day. The walks were shorter and I was more diligent in remembering to put the baby aspirin in my pocket, just in case. Lee and I spoke little of it. “You having a spell?” would be the only mention.

“Like the shining sun and singing birds after a storm, it is so easy to forget how scary it can be.

“So, today the sun is shining. Spring has arrived early. The trees are already wearing baby leaves. The wild onions are tall in the yard. I fill the bird feeders every morning. The lake is rising, threatening to cover the sandbar that allows us access to the islands. Today though, I will walk along the shore, now stained with the yellow pollen of the pine trees, washed onto the sand by the water. Our puppy Sam will dig for smelly treasures, and romp and splash at the shallow edges.

“I only know that today I feel good. Today, I am thriving. Whether it’s from drugs, stents, surgery, luck, plants, diet, love, grace or some predestined plan, I am grateful.”

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NOTE FROM CAROLYN:  My book “A Woman’s Guide to Living with Heart Disease“ reads like the“Best Of” Heart Sisters blog archives.  You can ask for it at bookstores (please support your local independent bookseller!) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher Johns Hopkins University Press (if you use their code HTWN , you can save 30% off the list price).

♥   Read Allie’s essay called “Life’s a Beach“ on her blog, New Allie’s Heart.