by Carolyn Thomas ♥ @HeartSisters
Here’s my theory: few health crises in life are as frightening as surviving a cardiac event. I developed this theory while I was busy having my own “widow maker“ heart attack in the spring of 2008.
This is the 10th in our 10-part “What I Wish I Knew Back Then” series of articles here on Heart Sisters revisiting some of the most commonly asked questions among freshly-diagnosed heart patients. For starters, we know that – despite many advancements in cardiac care – the profoundly important psychological impacts of surviving any type of frightening cardiac event are often overlooked, particularly in women.
And if – each of these is still, sadly, a big fat IF for many women – we survive the actual cardiac event (no matter what type of heart problem is diagnosed) 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 guideline-based 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.
But home is where things can feel even more frightening.
Trauma fallout hits later at home because so often, we are plunged immediately into a profoundly surreal state of denial during the earliest days in hospital. (I love the true yet bizarre example of this state from Jodi Jackson’s account of her own Post-Heart Attack Stun).
But reality has a way of eventually intruding into even the most dogged attempt at denial.
Once the freshly-diagnosed heart patient returns to the regular routine of home life, she can start thinking about what has just happened to her body and to her life.
Unlike cancer patients who fear the external danger that has invaded their bodies, heart patients fear the danger that lives within. 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 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 myocardial infarction (heart attack). Each time a person recovers, he/she has lost a little more muscle to an increasing area of scar tissue.”
So something I had taken for granted all my life (for example, that my heart would continue to beat regularly and pump blood like it’s supposed to do) had suddenly turned on me. How could I learn to trust an organ like this ever again?
This mistrust helps to explain why each little cramp, bubble or twinge that follows a cardiac event can feel every bit as alarming as the earliest scary symptoms that forced us to seek emergency care in the first place – whether those first symptoms happened two years or two weeks ago. And here’s an uncomfortable truth about cardiac risk factors that heart patients soon learn: one of the most significant risk factors for having a major cardiac event is having already had one. No wonder every new twinge in our chest feels so alarming! 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!”
Another cardiac psychologist, Dr. Wayne Sotile, in his excellent book Thriving With Heart Disease, reassures us that feeling scared 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 all is. 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 seems to have stopped doing what we trust it to do.
That exhaustion is what ultimately led me to a “Eureka!” moment of patienthood, inspired by my old friend, Heather Fox.
Heather is a wise and wonderful therapist (and a former colleague at the Victoria Hospice and Palliative Care Society where I worked for many years before my heart attack). She visited me at home several times in those early weeks and months post-heart attack. Back then, I not only felt afraid of a future heart attack – I felt a strange sense of icy dread just getting ready for bed each night – because I knew with absolute certainty that this was the night I would likely die in my sleep from yet another widow maker. So before getting into bed, I tidied the apartment from top to bottom, scrubbing counters, sweeping floors, shining bathroom taps – all so that the paramedics (or worse! my grown children) would find my corpse in a nice tidy place the next morning. This crazed behaviour continued for weeks. (The upside: my apartment had never looked so good!)
But one morning, I’d successfully survived the night before and found Heather arriving at my door with a gift: a guided meditation CD, one that helped me visualize oxygenated blood cells coursing happily through my newly revascularized coronary arteries. (Before you ask, I don’t remember the name of this CD because I’ve lent it out to so many heart patients over the years that I lost track of who has it now!)
Instead of letting me continue to blame my errant organ for screwing up its only job, the CD’s message invited me to change how I thought about – and how I talked to – my own heart, just as Heather had taught me:
Instead of resenting my poor heart for letting me down, I was advised to express gratitude:
“Thank your brave little heart for helping you to survive what many do not.”
That powerful message has stuck with me every day since then. Well, almost every day. . . Some days, let’s face it, it’s harder to remember than others.
But instead of blame, mistrust, despair, anger and resentment – which had taken over 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!”
I still like to do this, 15+ years later. Mine is not a perfect organ, but given what it’s been through on my behalf, my amazing and heroic heart deserves at least that.
♥
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 (please support your independent neighbourhood booksellers) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from Johns Hopkins University Press. (Use their code HTWN to save 30% off the list price when you order).
Q: What has helped you make peace with your own diagnosis?
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
Looking for meaning in a meaningless diagnosis
Why hearing the diagnosis can hurt worse than the heart attack
Heart Sisters 
We all have a ‘use by date’ so the only thing I can suggest is to find Christ and after that enjoy life.
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What you speak of Carolyn is so true for many many situations, not just heart issues.
People often roll their eyes when gratitude is mentioned as a counterbalance for feelings of fear, anxiety, anger and mistrust that are crippling their lives. But it works.
The truth is Love and Fear cannot exist in the same place. Gratitude towards a person, place or thing is an act of Love and therefore its very presence in a situation will begin to dispel the fear. Fear of death is the great boogie man behind both our anger and anxiety…dispelling it with Love and Gratitude is a healthy way to deal with it.
One might say, “What is there to be grateful for? I feel miserable?” The key is to take the time to look for those things in life you are grateful for. You’d be surprised how gratitude snowballs and the list gets longer and longer and the fear dissolves.
Blessings!
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Hi Jill – I was thinking while reading your astute comment that one reason people roll their eyes when gratitude is mentioned might be TIMING.
During my late-night apartment cleaning adventures, post-heart attack, for example, I was somehow just trying to fend off DEATH, never mind stopping to smell the roses or enjoy a nice sunrise or write a thank you card. I couldn’t appreciate much in those early days. It was only much later that I began to see how taking a small moment to enjoy those roses or that sunrise or send the thank you note helped me feel better, a little bit every day, until one evening after dinner I just lost the urge to prepare the apartment for my imminent death! I slowly started feeling my grateful feelings until they became a regular habit (as you wisely say, Love and Fear can’t co-exist in the same space!) – but I could NOT practice them at all in the throes of grieving for my ‘loss of self’ in the early days.
I was also reminded (speaking of TIMING) of a compelling story my lovely daughter-in-law Paula told me about two of her close high school friends. She calls this story the “Well, at least” story: Many years ago, the two teen-aged friends lost their mothers – in a terribly cruel twist, both of the Mums died on the SAME DAY! Each of the daughters told Paula later how shocked and hurt they felt by some of the reactions from well-meaning family and friends to their horrific loss.
One of the mothers had died suddenly that day, the other mother had died in the hospital after a fairly long illness. Yet both daughters heard condolences from others starting with the words, “Well, at least…”
The daughter whose mother had died suddenly heard immediate sentiments like: “Well, at least she didn’t suffer and linger in the hospital…” The daughter whose mother had died in the hospital heard: “Well, at least you were able to spend time visiting with her before she died. . .” Only the two daughters themselves, much later on, could have decided if those words were actually true for them. The ONLY thing they knew to be true was “My mother is dead!”
NOTE TO SELF: “Never start a sentence to a sick/angry/scared/grieving person beginning with ‘Well, at least’!”
Thanks Jill for your wisdom. We have lots to be grateful for. ♥
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Carolyn
I’ve been reading your blog for several years, learning a lot and appreciating the connection. This last month, I’ve needed everything I learned.
I moved into a new condo on July 28 and in the next 4 days, thought the chest pressure and fatigue were from the stress of moving. I’m really good at denial but finally woke up when I tried to do gentle yoga and my head started to spin. Tried to take the dog for a walk and felt intense chest pressure, fatigue and dizziness. When I sat down to check my pulse and counted a heart rate of 38, I thought, “I must have counted wrong.” This after being a nurse for 42 years…
This time I had a friend drive me to the ER, last summer I drove myself! When the nurse put on a monitor and told me my heart rate was 36, my first thought was “Well I didn’t make it up”.
All this led to an expedited appointment with a cardiac electrophysiologist who surprised me by increasing metoprolol saying that I didn’t have true bradycardia but functional bradycardia because every other heartbeat was a PVC (PreVentricular Contraction, or extra heartbeat). I was reluctant to go with his recommendation but it stopped the chest pressure, fish jumping in my chest sensation and dizziness. I also didn’t know I could live with a resting rate in the low 40s and active rate in the 50s. All this is temporary because I’m scheduled for an ablation to knock out the cells generating PVCs on September 8. Your column on not apologizing and being willing to ask for/receive help was most helpful. Also, all your writing about fear. I hope the ablation stops or radically diminishes PVCs so I am left only with microvascular angina. In the midst of this my kids prevailed in their request that I wear an Apple watch and to my surprise, I find it helpful, even reassuring.
Thanks much. Keep writing.
Sara
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Hello Sara – I loved reading this comment today!
It reads like an important list of recommendations for all new heart patients, e.g.
– pay attention to strange symptoms that feel unusual FOR YOU (like feeling dizzy during gentle yoga), or
– don’t drive yourself to Emergency, or
– sometimes it’s good to take your doctor’s advice on medication dosing adjustments (even when you feel reluctant at first), or
– when your kids want you to wear your Apple Watch, listen to them! (my favourite!)
Good luck with your ablation procedure on September 8th, Sara! I too hope that you notice an improvement! ♥
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I can certainly relate, especially in light of other issues – vasculopathy in the form of fibromuscular dysplasia (FMD) which was discovered during a heart attack, now almost a year ago.
There was much confusion about diagnosis of both the heart attack and the FMD, so once they made up their minds, the whole thing was surreal. And there is a certain vigilance that comes after a few near-misses. Basically, I get scans every six months to make sure my renal and hepatic arteries are not blocked and that there are no imminent dissections or aneurysms.
It is easy to make oneself crazy about this. I decided recently that my best strategy for both the heart and vascular stuff is to meditate, focus on mindfulness, de-stressing and anti-inflammatory Mediterranean diet.
I do think our state of mind is key and better to focus on everything moving smoothly thru our blood vessels and heart working well than imagining the other. Of course, when one is asked every visit about abdominal and chest pain it takes effort to be reasonable about it. I am trying hard to focus on how well my body has worked for my entire life and not focus on the more recent discoveries of things not working quire right.
One tech remarked, after doing a Doppler ultrasound to diagnose venous insufficiency, that she was amazed at how I’d been able to go as long as I have (was 70 at the time) without major problems. And that I must have taken good care of myself. Of course that statement is hilarious to me now, but it’s true. My body has served me well and it’s important to focus on that.
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Hello Helen – it’s not surprising that many of us would be driven slightly crazy every time we had yet another scan or appointment. These are all being ordered for a sound medical reason, but each one is what Mayo Clinic’s Dr. Victor Montori calls “the burden of treatment”. I met a man once who told me he’d recently stopped taking all of his cardiac meds because he said he didn’t want to be “reminded” that he’s some kind of sick person who needs to take pills.
I’ve heard that our subconscious doesn’t see the difference between a bad thing happening and our worrying that a bad thing MIGHT happen. So we might as well try to fool our nervous system by – as you wisely put it: “Focusing on how well my body has worked for my entire life!” Brilliant! And that tech doing your Doppler ultrasound was such a wise person!
Meditating, mindfulness, de-stressing and Mediterranean cooking: sounds like a great strategy, Helen! Take good care…♥
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Thank you for this and everything you share with us. I haven’t had a heart attack but I do have some heart issues that could lead to that, and your book and blog have been most helpful.
What drew me to this post has to do with nearly dying of COVID in April of 2020. It has felt like a “Sword of Damocles” is hanging over me and I am hyper-aware of my mortality. It hits me at bedtime or I wake up with the extreme anxiety of it in the middle of the night. Approaching it all with gratitude to my body for getting me through and keeping me going feels like it will be helpful.
Thank you for your open and caring perspective.
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Hello Melody – I’m so glad that you found my book and blog helpful, but I’m NOT glad of course about your COVID experience. On so many levels, COVID affected all of us just by terrifying us so profoundly. Within days of the first warnings from other countries, my brother-in-law in Italy lost two of his closest friends in one week. Suddenly, this was REAL and it was hitting home, people were dying (a LOT of people), news reports were terrifying, hospitals were filled, our world was shaken.
In your case, you also had the up-close and personal experience of becoming a COVID patient. No wonder you felt that “Sword of Damocles” over your head. And no wonder you were – likely for the first time! – hyper-aware of your own mortality. You were closer to death than you’d likely ever been until then – AND yet unlike so many other COVID patients, you survived! Your body did good!
Another thing: the trouble with continuing to live with that bedtime or middle-of-the-night dread and anxiety is that it is ultimately absolutely exhausting. As the late Dr. Leo Buscaglia once wrote: “Worry never robs tomorrow of its sorrow, it only saps today of its joy.”
When I was getting ready, post-heart attack, to die, cleaning my apartment to within an inch of its life every night, week after week, post-heart attack, I slowly began to notice over the weeks that I hadn’t died yet. That sounds weird, I know, but it seems that my anxiety shifted from “knowing” something bad will definitely happen to me tonight based on my utter certainty that it would – to feeling tired of cleaning – and then thinking that, based on pretty clear evidence, something bad had NOT happened. At all! That led me to wonder if maybe I could be wrong about “knowing” that death was actually imminent. How many hours/days/weeks did I throw away on worry instead of noticing tiny joyful moments?
As a cheeky friend told me at the time: “You’re a heart patient, so you can take a pretty good guess about your cause of death one day – but you could also get hit by a bus tomorrow – in which case all that worrying about another heart attack would have been such a waste of precious time!”
Your amazing body somehow enabled you to survive COVID three years ago, which is pretty fantastic when you think about it. I do believe that you’re right – approaching the next three years being grateful to your body (in both major ways and very tiny ways) for getting you through and keeping you going will help you a lot.
Thank you for your kind words, Melody. Take care . . .♥
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Dear Carolyn,
You can imagine the shock we experienced when we (a biking group made up of mostly university professors) phoned one of our members to find out why he hadn’t joined us only to be told he was being put on a helicopter to be medivaced to Sudbury to have his heart examined by the specialists there!! It seemed inconceivable that he, one of our fittest and youngest members, would have heart problems.
It’s been two months now since the specialists decided that he should receive double stents because of his 80%+ blockage. Returning home, he found he became too anxious sleeping alone in his apartment, so we offered our spare bedroom for him to stay in – which relieved his anxiety.
Every day we would ask him how he was sleeping and he always replied with a litany of aches, twinges and other concerns. I was feeling frustrated with his “negative” responses when I read on of your recent articles which described what survivors of heart “incidents” often go through.
I sent your article to him (as well as this latest one) which has reassured him that he is “normal” in his reactions to every twinge.
As many readers have stated, your blog has made a big difference in many women survivors’ lives. As you know, but it is worth repeating, your blogs often have useful bits of information for male survivors.
I mostly am writing you to thank you for helping me understand my friend’s situation and have more compassion about what he is going through. He isn’t a “whiner”, but a person who has to re-evaluate his new situation and is questioning his once reliable heart. I hope is able to change from “Why Me?” to “Thank you, brave heart.”
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Hello my dear friend Peter – what a lovely surprise to see your name in my comment inbox today! Thanks so much for sharing your friend’s story – and YES what he’s experiencing is normal-normal-normal! Thank you also for your kind words. I do write specifically for female heart patients, but of course as you say there is so much overlap that applies to men as well. And I often have men in my “Heart Smart Women” audiences – which I LOVE to see (because men have wives and mothers and sisters and daughters!) I have written lots about the medical profession’s profound lack of interest in the psychosocial/emotional impact of a cardiac diagnosis – and I suspect physicians are even less interested when a MALE PATIENT (who is “supposed” to be manly, tough and stoic!) is suffering emotionally.
No wonder you felt initially frustrated by your friend’s ‘negative’ responses. It’s often hard for family and friends to ‘get’ this kind of reaction. And it’s natural to want and need the people we care about to say “FINE THANK YOU!” – which can help to reduce our own concerns about how they’re doing. It can be especially tough to be compassionate when the patient looks fit and healthy (after all, he “doesn’t LOOK sick!“) Yet there are likely few things in life more anxiety-producing than being told that there’s something wrong with your HEART!
I sometimes wish I had a neck brace or a leg cast on the days when my own cardiac symptoms flare up!
FYI, here’s another post I wrote about 10 years ago that you might want to also share with your biking group, called “Healthy Privilege: When You Just Can’t Imagine Being Sick”
I believe that, like the vast majority of heart patients I’ve met in person or online through this blog, your friend will one day be happily thanking his brave heart for helping him survive what many do not. But he’s in relatively early days still. Most heart patients report a truly significant change around their one-year “heart-iversary”.
I’m sorry I wasn’t able to connect with you during your recent visit to Victoria, Peter! Next time be sure to give me some advance notice when you’ll be in town so we can mark our calendars IN INK (that is, if we are still using ink!!)
Big hugs to you and Lanyan. . .♥
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Once again Carolyn, this reaches inside me. . . to my own fears, concerns, and hope. You explain this all so well.
I’ve had the thought: “Should I go to bed, or stay up in case I die?” Managing this is a balance and whispering thank you to my heart is something I hope to remember to do, especially when things feel uncertain.
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Hello Dima – I suspect that this odd bedtime reaction is not at all uncommon, especially in the earliest days and weeks after a shocking cardiac diagnosis. You’re so right – it is indeed a balance to manage that overwhelming swirl of emotions…
Take care – thanks for sharing your perspective! ♥
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