Heart disease within “the comfort of denial”

17 Apr

Allie's puppy, Sam, at the lake

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 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. 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 inflamed 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.”

/

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

14 Responses to “Heart disease within “the comfort of denial””

  1. Lora Frisch April 20, 2012 at 6:24 am #

    Yesterday, I was reading a blog in which a woman described years of agony until a doctor recognized it was her hip that was the problem. It so mirrored the stories of women who had doctors who failed to realize they were having a heart attack.

    Like

    • Carolyn Thomas April 20, 2012 at 6:32 am #

      This woman’s hip story makes me insane. It’s a perfect example of what social scientists call “confirmation bias” on the part of physicians: looking for evidence to support a pre-conceived opinion, rather than looking for information to prove oneself wrong. More on this (and six other types of thinking errors in medicine at Experts: Why So Wrong So Often?

      Like

  2. Francene Williams April 18, 2012 at 8:55 pm #

    This blog really said it all for me – thanks to Allie for reminding me that it’s ok to feel the way I do – doesn’t matter who likes it or cares.

    Right now, life is what it is and I am thankful for every moment. To have a 100% blocked right coronary artery (grew collaterals around it) and a 40% blocked left anterior descending, I should not be here. I won’t bore you with the details, but I was driving in rush hour traffic on the way to work when the big one happened! But ignorance is bliss – I didn’t know what had happened and good old me never missed a lick – made it to work (only by the grace of God) and never saw a doctor until a 2nd one happened a year later.

    And now, added to all of the ‘normal anxiety’ of the good day/bad day syndrome, I also deal with pulmonary sarcoidosis (so now is the chest pain in the lung or in the heart?!!), asthma (can’t breathe today – is it the heart, the sarcoidosis, or the asthma?), and type 2 diabetes (oh go ahead and eat the cake – and the bread too – and don’t forget the pie! Who cares!!)

    I love Lorraine’s poem – will print it out and put it where I can read it often. And I will continue to try to use good sense and fight remaining in that comfortable denial zone because I have much to fight for – my family.

    Like

    • Carolyn Thomas April 18, 2012 at 9:25 pm #

      Beautifully said, Francene. Your rush hour heart attack is quite the story! Thanks very much for sharing the reality that’s so familiar to so many.

      Like

  3. New Allie April 18, 2012 at 3:11 pm #

    Thank you Carolyn,
    The beautiful way you have wrapped your own wisdom and compassion around my words brought me to tears. And thank you for all you do for all of us. I am grateful,
    always,
    Allie

    Like

    • Carolyn Thomas April 18, 2012 at 3:21 pm #

      Hello Allie – as you can tell from the other comments here, your words (both familiar and reassuring) have touched other hearts too. Thanks so much for allowing me to reprint them here.
      cheers,
      C.

      Like

  4. Joan Johnson April 17, 2012 at 12:06 pm #

    Allie’s experience, so beautifully written, expresses how I feel. It brought tears to my eyes, and comfort to know that others cope much the same as I do.

    Like

    • Carolyn Thomas April 17, 2012 at 8:20 pm #

      I agree with you, Joan. I love Allie’s writing and immediately identified with her experience, too.

      Like

    • Lorraine Gradwell April 18, 2012 at 8:32 am #

      Writing from Manchester, England: this resonates with me, thank you: I had my heart attacks early last October, didn’t know what was happening and this left me frightened that I could have more – post stent – and still not know it.

      I began a creative writing course the same week and wrote this poem:

      What was that?

      Listen to your heart. What does it say
      When it jumps and flutters and thumps?
      What does it mean? Is it bad? Or okay?
      Which is it?

      Familiar sounds, some fast, some slow,
      Each clunk and whoosh and beat.
      But now: I think I didn’t know.
      Or did I?

      Silent damage, death by stealth
      An unfelt pain revealed
      No hint, no clue about poor health,
      Or was there?

      My heart attack, my brush with fate –
      I’ll know it again they say.
      Stripped of disguise, no doubt – but Wait!
      Was that another? Was it?

      Like

      • Carolyn Thomas April 18, 2012 at 10:57 am #

        I love your poem, Lorraine! It perfectly captures that “Is this something? Is it nothing? Should I call for help?” disorientation that grips us during surprising post-MI symptoms. It’s like they say: before a heart attack, all symptoms feel like indigestion, but after a heart attack, all symptoms feel like another heart attack is here. Thanks so much for sharing your poem with us.

        Like

  5. Dr. Anne Stohrer April 17, 2012 at 5:16 am #

    These are the issues that no one discusses: the emotional and psychological aspects of our heart journey. Denial is a useful coping mechanism, but it brought many of us to this place of surgeries, stents, medications, etc. Support groups are not available in my area because “they don’t pay”, but reading this beautiful entry refreshes my soul.

    Like

    • Carolyn Thomas April 17, 2012 at 7:07 am #

      You’re so right, Anne – the emotional and psychological aspects following a cardiac event are ignored by most health care providers. It’s the curse of acute medicine: get sick, see your doctor, get treated, thank your brilliant doctor, end of story. Not so with many heart patients . . . I’m very glad you enjoyed Allie’s wisdom here.

      Like

    • Sherrie L. Bullard April 17, 2012 at 4:40 pm #

      It’s really hard to know when to be concerned about symptoms like throat fullness or choking sensations and mild discomfort in the chest. I had all these symptoms today after having a N-95 fit test where they place a hood over your head and spray a chemical inside the hood. I have not felt right since but not sure what to do when I feel these symptoms, because they occur at different times and usually unexpected no triggers.

      Like

      • Carolyn Thomas April 17, 2012 at 9:13 pm #

        Hi Sherrie – did you contact those who administered your N-95 fit test? They should be made aware of any and all after effects that may potentially be due to this procedure. I understand that these N-95 respirator/masks are worn by health care workers who are likely to be exposed to patients with airborne, communicable diseases; masks need annual fit-testing like you had today.

        Like

Your opinion matters. What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: