The day I made peace with an errant organ

~ Carolyn Thomas

by Carolyn Thomas    ♥  @HeartSisters

Here’s my theory: few health crises in life are as traumatic as surviving a cardiac event. I developed this theory while I was busy having my own heart attack in the spring of 2008.

For starters, cardiac symptoms often come out of the blue (in fact, almost two-thirds of women who die of coronary heart disease have no previous symptoms.(1)  Having a heart attack can feel so unimaginably terrifying that almost all of us try desperately to dismiss or deny cardiac symptoms. And according to a report published in Global Heart, the journal of the World Heart Federation, women are twice as likely to die within one year even if they do survive a heart attack compared to our male counterparts.(2)

So if – and each of these is still, sadly, a great big fat IF for too many women – we survive the actual cardiac event, and if we are near a hospital that’s able to provide an experienced team of cardiologists/cardiovascular surgeons/cardiac nurses, and if we are correctly diagnosed, and if we receive timely and appropriate treatment, and if the resulting damage to our oxygen-deprived heart muscle is not too severe, we get to finally go home, safe and sound.

And that’s where the real trauma starts.  

Trauma fallout starts later on at home because so often, we are plunged immediately into a profoundly surreal state during the earliest days in hospital, post-cardiac event. A true yet weirdly hilarious example of this state is Jodi Jackson’s account of her Post-Heart Attack Stun).

But reality has a nasty way of eventually intruding into even the most dogged refusal to come to terms with it.

So once the freshly-diagnosed heart patient returns to the regular routine of home life, she starts thinking about what the heck has just happened to her body and to her life.

One of my readers – a double whammy winner in the Sweepstakes of Awful Diagnoses (first breast cancer and then, five years later, cardiovascular disease) – once wrote to me about how her heart attack differed significantly from her cancer experience. For example:

“With cancer, the enemy was something foreign that had somehow invaded my body. A tumour should not be there, and all medical effort is intensely focused on getting rid of this evil intruder.

“But with heart disease, the threat comes from my own heart, part of me!  I can’t get rid of that!“

Hence the surprisingly common reaction among many survivors that our hearts have somehow betrayed us.  Some of my friends living with other chronic illnesses have lobbed similar accusations against their bowels, pancreas, lungs, joints and other assorted body parts that simply do not work like the owner’s manual promised.

No wonder the late physician, author and Yale professor Dr. Sherwin Nuland described a heart attack like this (note how he, too, used the word “betray” here):

“So commonly do coronary arteries betray the heart whose muscle they are meant to sustain that their treachery is the cause of at least half of North American deaths.

“When a coronary artery suddenly occludes, a period of acute oxygen deprivation ensues. If this period is long and severe enough that the stunned and bloodless heart muscle cells cannot recover, the pain of angina is replaced by infarction.

“Each time a person recovers from a heart attack of any size, he/she has lost a little more muscle to the increasing area of scar tissue.”

Now there’s a cheerful sentiment for you, right? Something we have taken for granted all our lives (that our hearts would continue to beat regularly and pump blood like they are supposed to do) has suddenly turned on us. Which means we can’t trust it anymore.

And in some cases, we can develop a type of coronary disease that is not caused by a blocked artery.  One diagnosis in particular  – tricky to come by since almost all cardiac diagnostic testing for decades has been designed and researched on (white, middle-aged) men who have large blockages in their coronary arteries – is called Coronary Microvascular Disorder (MVD)  or Small Vessel Disease – which I was diagnosed with about nine months after surviving what doctors used to call the widowmaker heart attack in 2008.  Two cardiac diagnoses for the price of one. . .

Unlike cancer patients who fear the external danger that has invaded their bodies, heart patients fear the danger that lives within.

This also helps to explain why each little cramp, bubble or twinge that follows a cardiac event can feel every bit as alarming as the first symptoms that forced us to seek urgent care. 

As Australian cardiac psychologist (and himself a heart attack survivor) Len Gould likes to say:

“Before a heart attack, every chest pain is just indigestion.  But after a heart attack, every chest pain is another heart attack!”

Heart patients soon learn that they’ve just drawn the short straw in determining the future risk of another cardiac event, because one of the biggest risk factors for having a major cardiac event is having already had one.

Another cardiac psychologist, Dr. Wayne Sotile, in his excellent book Thriving With Heart Disease, reassures us that feeling terrified every day is “normal”:

“Moving very slowly, bouts of depression, weeping, social withdrawal or obsessive anxiety about dying – these are all normal during the early stages of heart disease.”

I don’t care how “normal” it may be, trust me when I tell you that “obsessive anxiety about dying” is a relentlessly exhausting way to live – and all because the body’s most important organ has stopped doing what we trust it to do.

That exhaustion is what ultimately led me to a “Eureka!” moment of patienthood, inspired by Heather Fox.

Heather is a wise and wonderful therapist (and a former colleague at the Victoria Hospice and Palliative Care Society) who visited me at my home several times in those early weeks and months post-heart attack. One day, she brought me a gift: a guided meditation CD, one that helped me visualize oxygenated blood cells coursing happily through my newly revascularized coronary arteries.

Instead of letting me continue to blame my errant organ for screwing up its job, the CD’s message also invited me to change how I thought about and how I talked to my heart, just as Heather taught me:

Instead of resenting my heart for letting me down, I was now to express gratitude:

“I thank my brave little heart for helping me survive what many do not.”

That single message has stuck with me every day since then. Well, almost every day . . . Some days, let’s face it, it’s harder to remember that important message than others.

Instead of blame, mistrust, anger and resentment – which had daily filled my soul during those early “Why me?” days – I learned to place my hand over my chest several times a day and offer this gentle whisper:

“Thank you!”

It’s not a perfect organ, but given what it’s been through on my behalf, my amazing and heroic heart deserves at least that.

♥

This essay was also reposted on Disruptive Women in Health Care, and an excerpt from this post is also included in Chapter 10 of my book, A Woman’s Guide to Living with Heart Disease  (Johns Hopkins University Press) You can ask for this book at your local library or favourite bookshop, or 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  (Use their code HTWN to save 30% off the list price when you order).

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(1)  Roger VL, Go AS, Lloyd-Jones DM, Benjamin EJ, Berry JD, Borden WB, et al. Heart disease and stroke statistics—2012 update: a report from the American Heart Association. Circulation. 2012;125(1):e2–220.

(2)  Kavita Sharma, Martha Gulati. Coronary Artery Disease in Women: A 2013 Update. Global Heart. 2013. ISSN 2211-8160

Q:  What has helped you make peace with your diagnosis – whatever it may be?

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See also:

Goodbye, hospital. Hello, home! And other scary things.

Not just for soldiers anymore: Post-Traumatic Stress Disorder after a heart attack

Denial and its deadly role in surviving a heart attack

Can denial ever be a good thing for heart patients?

Looking for meaning in a meaningless diagnosis

Why hearing the diagnosis can hurt worse than the heart attack

What heart patients can learn from cancer patients

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Published by Carolyn Thomas

27 thoughts on “The day I made peace with an errant organ”

  1. Hello! My father is also experiencing some emotional and psychology struggles 2 years after open heart surgery for Congential Heart Defect.

    I’m looking to compile some resources for him for Christmas. I’m curious about the meditation CD that helped you? I was hoping maybe I could find it on Spotify or something similar?

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    1. Hi Hannah – good for you for stepping up to help your Dad.

      Unfortunately, I no longer have that wonderful meditation CD (I’ve lent it out to so many people over the years that I can’t remember where it ended up! I hope whoever was the last person has continued to lend it to others in need since then!)

      If you Google “guided meditation for heart surgery patients” I’m pretty sure you’ll end up with some good examples.

      Good luck with that. Take care, Happy Christmas to you and your father. ♥

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  2. I’m glad I read this article just now. I have 12 stents over 12 years (about 2 at a time), necessitating 6 trips to the ER and just NSTEMI. But after all this time and all these stents, it’s been three years since the last trip with not a twinge. BUT, increasingly, I worry that the next trip will be the one that needs heart surgery.

    I just realized that I wrote something similar in August. So, it’s still there. An active antidote just might help.

    So, placing my hand over my heart and saying, “Thank you” seems like just what the doctor ordered for me at this time.

    Thank you.

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    1. Thanks so much for this, Pauline. It’s a good example of how, even when things are going pretty well for YEARS, we can still carry that niggling little worry inside that something bad might happen.

      That is 100% true: something bad might happen – but that ‘something’ could be getting run over by a bus today, yet we don’t lie awake at night worrying about that option. (I remember the turning point for me was when I woke up one morning after a long long time basically preparing for my death overnight, every night, day after day after day, realizing: Hey, I’m not dead. I seem to be still alive, yet how many hours/days/weeks have I wasted preparing for the worst?

      That kind of ruminating has GOT to be worse for our heart health than anything going on inside our hearts!

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    2. I have to have an echocardiogram once a year, and it’s a wonderful opportunity to actually see your heart, hard at work at keeping you alive. I have an aortic valve with metal in it, and it shows up like a twinkling crown in the middle of my heart. It’s a good opportunity to ponder the beauty and fragility of life and thank that hard-working chunk of muscle.

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      1. “A twinkling crown in the middle of my heart” – have never seen an aortic valve described so poetically before, Wendy! I love your attitude towards the “beauty and fragility” of life, and I’ll think of your words at my next echo appointment. Thanks so much for this…

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  3. I think some things in this made my anxiety worse like saying women are twice as likely as men to die within a year of having a heart attack, that is a terrible thing to read and then to try to focus on getting your normal life back with the constant thought of well I will probably die soon anyway is terrible! I am 43 recently had a heart attack and live in fear everyday and was looking here for some positive help but now instead i regret reading this.

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    1. Tammy, I’m sorry you felt more anxious after reading this post.

      I could have made up some more cheerful statistics for you, but that’s what they would have been – just made up! Many of us do feel very afraid, particularly in the early weeks and months post-diagnosis. Every twinge convinces us that we are for sure having another heart attack, any minute now. It’s an awful way to feel.

      It’s important to remember that knowledge is power. You likely don’t believe that now, because it often seems that pretending we don’t know feels safer. The more you know, the better the decisions you’ll be able to make about your future health. The less you know, the longer you can remain in denial.

      Your comment reminded me of a story that Alaska cardiac psychologist Dr. Stephen Parker (himself a heart attack survivor) once told: “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.”

      (By the way, he wrote that eight years ago and he is still going strong, despite being convinced back then that he would “probably die soon anyway” as you are saying, too).

      You are going to read and hear many non-sugar-coated facts about your diagnosis (not from me if you choose to go elsewhere, of course, but it’s all out there!) Your only choice is how you’re going to respond to what you’re about to learn (here are some small steps to help do that). Good luck to you in getting through this difficult early stage and taking some constructive steps, one at a time, towards a healthier and happier future.

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  5. Thank you so much for writing this.

    I’d actually had to stop reading anything about heart conditions because I was scaring myself and becoming afraid of my own body, so I’m glad I ended up reading this post instead of deleting it after it had sat in my inbox for several days. I’ve never had a heart attack, but I ended up in the ED last fall in hypertensive crisis with a bp of 200/120. My followup with my regular doctor discovered a heart murmur, and the cardiologist I ended up with diagnosed hypertrophic cardiomyopathy, possibly caused by the high blood pressured I’d ignored for at least a year. 1 in 500 adults have this, and most don’t die from it, but knowing I can sometimes terrifies me.

    I’m grateful for your reminder that my body is doing its best to keep me alive and isn’t trying to turn me into a paranoid mess with every little twinge; it let me know once when enough was enough well before it was too late, so I’m going to trust it will try to do it again if it has to.

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    1. Hi Julie – so glad you came back to read this post after all. Deciding to view your body as doing its best to keep you alive can be a big shift in perspective; always better to feel trust than to feel terrified.

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  6. Thought provoking. I am part of an international study of 150,000 people, on cardiovascular disease. We are in year six. It is neat because we go every couple of years and they do more tests on us than you would ever get by going to a doctor. But, even then I wonder. Even with all this testing – where do I stand?

    Something I learned by accident just this last month is that I have iron overload. I always cook in a cast iron skillet I don’t use a microwave and I even do stir frys in my cast iron pan. Then one day I decided to google Cast Iron frying pans and learned they increase your iron intake. I knew that but thought that was good…but most pos-menopausal women are more likely to have iron over load than too little Iron.

    As I read more — I realized my dad had this. So I went and got tested. I have 20 times as much iron (ferritins) as I should have. It can cause heart attacks…cirrhosis of the liver….Alzheimers – so why is this not a test we are all told to have done? Go have your Ferritins tested!

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    1. Hello Anne and thanks so much for your comment. I wrote about this in “Do low iron stores protect women from heart attacks?” a few years ago. Doctors often blame hormone levels for the sharp increase in women’s heart disease after menopause, but researchers in Finland point their fingers not at hormonal changes during menopause, but at stored iron building up in a woman’s body once the iron depletion of menstruation stops its cardioprotective function. It’s a fascinating theory.

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  7. Carolyn, may I copy this, “I thank my brave little heart for helping me survive what many do not.” for posting above my desk?

    Some days I really need this.

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  8. Well, I haven’t really had time to think about my heart. I had a quadruple bypass in 2012. After I had the bypass I was released from the hospital only to return 3 days later with a blood clot in my lung and left leg. When released from the hospital again I went back in a few days later to have a cancerous left kidney removed. My right kidney had to be jumped started, I guess one would say, because I had to go on dialysis to see if it would respond. After being sent home again I went back in with pneumonia.

    All told, it was 5 months. So, now I am in 4th stage kidney failure and my mind is always focused on pampering my one and only kidney due to Proteinuria. My high BP does not even make me think of my heart. I am constantly watching my sodium intake not because of my heart, but because of my kidney.

    I am mostly reminded to pay attention to it when I get your email. I have to tell myself, “oh yes, you’ve had a heart attack due to a stent being put in wrong!” Then I think more about it as I read your email and think at least it is behaving while I focus on my kidney. I know my high BP is affecting my heart, I just haven’t been able to make it a conscious thought.

    I love getting your emails and telling me I have a heart to look after too.

    Ruth

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    1. Oh, wow. Your experiences sound like you’ve had more than your fair share of assorted body parts that were missing their “best before” warranties, Ruth! Makes your brave little heart now look a real hero compared to everything else, right?

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  9. Lovely post Carolyn.

    I do an imagery with my clients having them quietly focus and thank ALL their body “parts” that work just as they are meant to work without calling attention to themselves . . . including eyelashes and nose hairs! This is a miraculous body we inhabit – even when it doesn’t always work as we want it to.

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    1. Hi Judy-Judith and thanks for weighing in here. I just love your concept of thanking eyelashes and nose hairs (and really, we don’t appreciate them until they’re gone, right?) We do indeed have miraculous bodies – no matter what.

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  10. I was told I had Cardiomyopathy while being admitted to the hospital and that my kidneys were having difficulty functioning. I have been told I had afib & arrythmia a couple days before being admitted to the hospital. My father had a weak heart and so did my maternal grandmother. Am I in danger of a heart attack?

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    1. Hi Kimberley – I’m not a physician so of course can’t comment on your specific medical issues. I can tell you generally however that if you have a heart arrhythmia, you should be seeing a cardiologist called an electrophysiologist who can assess your heart. Your family heart history is important to you only if your father/grandmother were diagnosed at an early age (men under age 55, women under age 65). Best of luck to you…

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  11. This was a most important article at a crucial time for me.

    Having had angina numerous times, resulting in a total of 10 stents, recently I went back again with chest pain, only this time there was damage.

    I had an NSTEMI myocardial infarction (heart attack), resulting in two more stents. So now there are four affected arteries around my heart. Nothing to sneeze at. Realization: most likely I will be having heart surgery at some point not too far distant. First time I am left with a feeling that I might “break”.

    Just getting used to it, so thanks for your musings.

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    1. Thanks for this perspective, Pauline. Nothing to sneeze at, indeed! Good luck to you, and meanwhile don’t forget to pat your brave little heart in acknowledgement of what it’s gone through so far for you.

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