by Carolyn Thomas ♥ @HeartSisters
I can still vividly recall the hospital volunteer I met while in the CCU (the Intensive Care Unit for heart patients). She told me that several years earlier, she too had survived a heart attack like mine: what doctors call the “widow maker” heart attack. That’s an ironically male-centric name for a heart attack so severe that it could transform a (male) patient’s wife into a widow. But what really struck me about this volunteer was that she was walking, talking, and most surprisingly – looking completely “normal” – at a time when I doubted I’d ever feel “normal” again.
Yesterday, May 6th marked 15 years since the day I met that woman in the CCU. On that sunny spring day back in 2008, while recuperating from a misdiagnosed heart attack, I not only doubted my capacity for normalcy, but I certainly didn’t believe I would live long enough to celebrate a 15th Heart-iversary.
At the time, I felt overwhelmed and stunned by what had just happened to me. I was filled with a cold icy dread of dying in my sleep – and probably very soon. Most likely tonight.
I told no one about this fear. When my family and friends were around, I just focused on keeping up the pasted-on smile I reserved for visitors.
Cardiac psychologist Dr. Stephen Parker describes this dread as “a sense of a foreshortened future“. It’s a symptom of Post Traumatic Stress Disorder which he too had experienced after his own heart attack. In other words, after a traumatic event like a cardiac diagnosis, the patient “no longer expects to have a career, marriage, family, or a normal life span.” Dr. Steve offers his example:
“Three months after my heart attack, I went to Home Depot to buy something for the house. I walked inside, saw a 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.”
(P.S. Dr. Steve tells me he is very much still alive).
Regular Heart Sisters readers might recall my story of a bizarre tradition I developed during those early days and weeks once I returned home:
Each evening before bedtime, I carefully tidied the entire apartment so the paramedics who discovered my corpse the following morning wouldn’t find me in a messy place. This odd behaviour went on for weeks, until eventually I grew tired of my evening cleaning ritual, especially since I hadn’t died yet. (See more on why patients often view housekeeping in bizarre ways: “Struggle Care: a New Way to Rethink Housework“).
I didn’t know I was depressed at first. I didn’t know anything about depression. I didn’t know that new-onset situational depression is remarkably common among freshly-diagnosed heart patients. I’m embarrassed to now admit that I’d always been a tad dismissive of people who took “stress leave” from work. Why couldn’t they just pull up their socks and get on with it? Now, I know why. Luckily, I found a wonderful therapist who really helped me learn how to adjust my perspective.
See also: When Are Cardiologists Going to Start Talking about Depression?
I no longer worry about dying in my sleep of another heart attack. That could happen, of course – but so could getting hit by a bus. I remind myself to enjoy the good moments – because days filled with good moments tend to be good days.
And here I am now – a bit surprised to be alive after 15 years! I still experience what doctors call refractory angina symptoms caused by coronary microvascular disease (diagnosed a few months after my heart attack, and *mostly* manageable with meds and rest). By now, I feel like I’m generally on top of most symptoms as long as I pay very close attention to pacing (a skill I’d never bothered to master). I now plan what I call “one-outing days” or“two-outing days” or (rarely!) “three-outing days” – carefully interrupted by recuperative naps. At least one of those daily outings is usually spent playing with grandkids. And I highly recommend grandbabies for optimal heart health!
Ironically, far more debilitating than heart disease to me these days is my recently diagnosed osteoarthritis, which mostly affects my hands and my left knee. Fifteen years ago, I never gave arthritis a moment’s thought – just as heart disease did not matter to me until it happened to me.
Marking a medical milestone like this turns out to be fairly common among those of us who have faced a life-altering diagnosis – no matter what the diagnosis may be.
My friends who have gone through cancer treatments, for example, talk about their cancer-versary dates – sometimes with mixed feelings surrounding those milestones. Some mark the date they were first diagnosed, or the date they finished treatment, or their 5-year cancer-free milestone.
According to the American Society of Clinical Oncology, milestones can trigger a range of emotions, from gratitude and relief to pain and sadness or fear of recurrence – even after several years have passed. For example:
“Preparing yourself for anniversary dates and honouring them in ways that are meaningful to you may help you sort through complex emotions and reflect on your experience.”
The reality for heart patients is that cardiovascular disease generally remains a chronic and progressive diagnosis. We also know that one of the most significant risk factors for having a heart attack, for example, is having already had one. None of us living with heart disease has a “five-year survival anniversary” date circled on a future calendar that we can meaningfully celebrate.
Our hardworking docs can patch us up, stent us, bypass us, zap our wonky electrical circuits, implant lifesaving devices in our hearts, prescribe the drugs that will help manage our symptoms, pat us on the heads and discharge us home from the CCU – but what they cannot do is fix what caused our cardiac events in the first place, often decades earlier. See also: Heart Disease: Decades in the Making
And that’s why I love celebrating a date on the calendar that I’d never thought I’d live to see. Another cardiac psychologist, Dr. Wayne Sotile, in his excellent book Thriving With Heart Disease, reassures us that feeling scared after a cardiac event 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.
So instead, I’ve learned over the past 15 years to thank my brave little heart for helping me survive what many do not.
Cupcake image: Alexandra Koch, Pixabay
♥
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).
Q: How do you mark your annual Heart-iversary?
Heart Sisters 
Last week I was having severe heartburn with my left arm feeling weird and lower back pain and nausea It lasted a week, also was very fatigued. I started feeling better this past Monday. I saw my Dr. And he thought I developed lactose intolerance and prescribed Lactaid chewable pills so I can eat dairy. I haven’t picked that up yet.
I stopped eating my usual breakfast of Greek yogurt and lunch of cottage cheese and pineapple. I suffer from Chronic Migraines, fibromyalgia, RA, SLE, and a underactive thyroid. It’s a lot! However today I had 2 bananas and the same symptoms came back. I’m starting to doubt that diagnosis, I do not have sweating or shortness of breath. Should I be worried?
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Hello MariKay,
I’m not a physician so cannot answer questions about your symptoms. You do have a lot on your plate with several serious diagnoses to manage at the same time – some of which may share the same common symptoms. The only comment I could offer is to start keeping a Symptom Journal (more details here) to see if a pattern starts to emerge.
Take care. . . ♥
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I’m so pleased you’re still here 😊
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Thank you, Julia! ♥
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Congratulations Carolyn!!!!
I am so glad that you made it and that you cared so much about women’s heart health that you started your blog. I did not have a heart attack but did have triple bypass surgery 16 months ago.
My only worry when I heard the news was get it done so you can get home to take care of your family. Never asked any questions of my doctors.
Through your blog, I learned that I need to know what happened and what part of my heart was fixed. My widow maker was 80% blockage, I never knew that. My right coronary was 99% blocked. I am slowly going though my medical records and I am slowly getting more informed with what went on.
Thank you Carolyn – you have been a life saver and a wonderful friend to us all.💝
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Thanks Susan for your very kind words. I’m so glad you found my Heart Sisters blog at just the right time. I think that your ‘get it done!’ reaction is amazingly common among female patients.
There’s an entire field of medical research, in fact, devoted to what’s called “treatment-seeking delay behaviour” among women experiencing serious cardiac symptoms. We tend to minimize those symptoms, or deny that we need help, or make everybody else’s priorities more important than our own.
I’m also glad you’re getting your medical records in order. As I like to say, your only job now is to become the world expert on your particular diagnosis! Hope you are feeling good these days and enjoying the sunshine.
Take care. . . ♥
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Thank you for sharing this, and congratulations on making it (and generally thriving, aside from the arthritis).
As usual, your column is immensely relatable, even for those of us facing a different chronic condition: The fear of not having a long-term future, the need for pacing (“one-outing” vs “three-outing days”.)
I have a while to contemplate milestones.
Here’s to your brave heart!
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Hello Cheryl – thank you for sharing your comment here – especially appreciated considering what I know you’ve been suffering in the past few months with your own health challenges. I wish you lots of courage and peace on the road ahead. xoxo
Take good care. . . ♥
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Congratulations and many more. I can’t imagine these past years without you in them. We can only begin to imagine the support and comfort you have given to all of us these many years.
Love forever.
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Hello dear Barbara! I think we’ve been in a kind of mutual admiration society since our paths first crossed quite accidentally in 2009! Your two books on fibromyalgia, including your new one, Fibromyalgia: Unravelling the Mysteries of the Dis-ease are classic texts. Although I don’t live with fibromyalgia myself, so much of what you write rings true for me and many heart patients, too. One of my favourite quotes from your writing, for example, is about the support group of Toronto women with fibromyalgia who get together regularly – not to discuss their shared illness, but wellness only! As you wisely cautioned us about the problems of ruminating over our symptoms: “Reliving past injuries of a physical or emotional nature only reactivates the nervous system.” – Brilliant advice that I’ve often reminded myself about!
When you suddenly, shockingly, became a heart patient 10 years ago, we had even more in common! Thank you for your generosity and kindness to me over the years.
Take good care. . . ♥
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Happy 15th Heart-iversary Carolyn!
You have experienced so much over these 15 years and have helped so many of us by sharing your story, your wisdom, important research, helpful resources, and your sense of humour.
I’m not sure what to expect on my 1st year anniversary, as I just marked my 4 month heart-iversary. I am still waiting for my follow-up cardiologist appointment which should have happened a month ago and is now apparently not until late June.
Thanks for sharing your time with us and giving us hope!
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Thank you Kathleen for such kind words.
Waiting for that first cardiologist follow-up is hard enough for a new patient without having your appointment postponed! I hope you do get in by late June. Don’t forget to bring along a written list of questions (and no question is too small!!) when you go to that visit, so that by the time you leave the office, you’ll feel much more informed about your case. As the weeks and months go by, you’ll be gradually better able to manage what seemed unmanageable four months ago.
Thank you for mentioning a ‘sense of humour’ in your response. I believe that this has really helped me in so many ways – in my writing, my presentations, and even in just coping with “one more thing” as a heart patient! I come from a family full of very funny people. Sometimes, if I didn’t laugh, I’d cry. . .
Good luck next month at your follow-up!
Take care, stay well. . . ♥
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I’m so thankful that you are here to celebrate your 15th!
All that you have experienced, overcome and shared with other cardiac patients has meant so much to those of us also taken by surprise by a drastic change in our health and future plans.
Best wishes to you on this special date!
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Thank you so much for your kind words. I think “drastic” is the perfect word to describe the profound adjustment not only to a serious diagnosis/treatment, but also to what behaviour scientists call “sense-making” as we try to make sense of something that simply makes no sense at the time! But gradually, as Bruce Springsteen sang in “Straight Time”: You get used to anything. Sooner or later it just becomes your life.
Take care, Debrah. . .♥
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Damn you’re good!
You captured so many of the emotions I can relate to in your recent post. YES to a pasted smile. YES on thinking this was the end. YES on tidying the house in case of death.
I don’t celebrate my “valversery” and I’m five years out. I am grateful to still be here, and to be on the “other side of 60.” I stay busy every day with activities of exercise, reading, traveling in RV. My cup is full, no regrets.
Thank you for you spirit and allowing us to join you and share in this journey!!
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Hello Paula – I love your response! It’s a relief when we come across others who have shared our own reactions to a serious medical crisis, isn’t it?
And I know that other heart patients with valve issues who read your words today will appreciate the wonderful description of your full and active life now!
Take care – keep that cup full! ♥
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Happy 15th Heartiversary!
I am so glad that you are doing so well and encouraging others! I look forward to seeing you in October!
Lesley
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Thank you Lesley – I’m looking forward to see you, too! ♥
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Carolyn, best wishes on your 15 year Heartiversary.
You and I were diagnosed with heart conditions within a month of each other. I’m grateful to have found your blog after finally finding out I was experiencing AFib/AFlutter (and not anxiety, as two primary care doctors erroneously thought for 9 1/2 years). You even inspired me to become a WomenHeart Champion.
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Hi Genevieve – Happy Heart-iversary to you, too!
NINE AND A HALF YEARS of being misdiagnosed with anxiety?! That’s absolutely appalling. . . I can’t help but wonder if those two doctors would have dismissed your cardiac arrhythmia all those years as “anxiety” if you’d been a man.
The only redeeming outcome: you got to go to Mayo Clinic for your WomenHeart Science & Leadership training – a life-altering experience for me personally. 🙂
Thank you – take care, my heart sister! ♥
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Happy 15th Heartiversary, my friend.
Take care,
Robin
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Thank you, Robin! ♥
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Happy heartiversary, glad you’re still with us. I haven’t had a heart attack, but I was diagnosed with microvascular angina in 2021. It can be hard to manage, I have to constantly worry about overdoing it.
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Thank you, Marilyn! I too live with microvascular angina – you’re right, it can certainly be a challenge some days. For example – temperature extremes! Very hot or very cold weather can significantly increase symptoms (for me, even walking down the frozen food aisle in the grocery store!)
Take care. . . ♥
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Reading your post, I Went through a recall of Heartiversary dates.
2006 – After 2 decades, finally properly diagnosed and medicated for HOCM (Hypertrophic Obstructive Cardiomyopathy)
March 13, 2013 – Open Heart Surgery to remove obstruction. Unsuccessful.
July 23, 2014 Open Heart Surgery at Mayo Clinic, successful removal of entire obstruction!
December 27, 2017 Stent for 90% obstructed artery caught before actual heart attack.
I have to say 2006 and 7/23/2014 were absolutely the most impactful Heartiversaries for me. Having faced death several times before my stenting procedure, I had little emotional reaction at the time. There is something other-worldly about allowing your heart to be stopped and its function taken over by a technician that humbles you and demands that Life be seen through a different lens.
I was shocked when Dr Joseph Dearani, my Mayo heart surgeon, called me on my 5th Heartiversary. . . Maybe I’ll call him on my 9th.
Happy Heartiversary – and Many More!!!
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Hi Jill – I looked up Dr. Dearani at Mayo: he says: “It’s really simple. The patient comes first!“
Any surgeon who calls patients on their 5th Heartiversary is indeed a special kind of doctor!
You have lots of dates to celebrate, Jill (although 20 years waiting for a correct HOCM diagnosis was a bit much!)
Take care . . . ♥
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What a great milestone!
Hope you are able to celebrate it in a meaningful way. I, for one, am delighted!
Your valuable information has been so helpful to me as I take this “hearty” journey through life.
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Hello Deborah and thanks for your kind words. I remember the day I first met you many years ago (during one of my University of Victoria presentations). I bet you never believed on that day that you’d one day become a patient yourself! Hope you’re doing well and enjoying springtime in our lovely town. . . ♥
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It’s been 5 years since my heart attack which was probably caused by a rare condition EAT – ectopic arterial tachycardia.
My heart rate soars and it can’t be lowered without a trip to the ER. After 2 ablations, I now have a relatively normal heart rate. Lots of meds also keep it under control.
The surprising news to me this month was that my annual echocardiogram showed that my heart is improving!! I can relate to your journey with the cloud of doom, but I must say that I make sure I laugh every day. It might be a stupid “dad” joke or a video clip online. It’s therapy for the soul for sure.
Keep on believing in the future.
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Hello Lynny – I’m so glad that you’re not only keeping your heart rate under control, but that your heart is now improving! I’m guessing that means your ejection fraction is getting higher!? That doesn’t happen to everybody – especially those people living with a rare condition. (I had to look it up: that diagnosis strikes only 1 in 10,000 patients!)
Thanks for your comment – please take care! ♥
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I’m about 19 months post heart attack, and every night I turn on the porch light so the emergency team can find my house should I need to call. Never thought like that before and I know it’s hyper-vigilance, but it’s one of several little rituals I have now.
I can’t tell you how reassuring it is to learn from your journey. Thank you and here’s a toast to your 15th heart-iversary!
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Thanks Tomi – I can totally appreciate your porch light strategy! It probably feels like one small comfort you can control each evening, during a time when you’re facing lots you cannot control. Completely understandable. . .
Take care and stay well. . .♥
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I don’t tell this story to many people – but some months after my heart attack I’m out on daily walk (doing quite well at that point) and come round the bend to my street to see a large box vehicle with flashing lights in front of my house. I panic and think oh lord the ambulance is there for me! Freaking but realize I didn’t call as I get a grip on myself. Then I think Oh maybe my neighbor is in trouble, slightly calming down.
But as I get closer I see that it is our weekly ReCYCLING TRUCK!
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Tomi, I love your story so much! It beautifully illustrates the power of mind over matter, and also shows how powerful that sense of hyper-vigilance can be.
Sometimes, we’re so mindful of danger around every corner, it doesn’t take much of a stretch to actually hear or see that danger – even in an innocent recycling truck!
I hope you see fewer pretend-ambulances outside your house these days. 😉 ♥
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Happy day indeed. I’m glad you survived to enjoy grandbabies and write this blog!
In January, I blithely went for my annual mammogram 14 years after breast cancer only to be stunned when the nurse practitioner told me I had another ‘abnormal’.
I’m thankful for early detection, recovering from another lumpectomy and radiation. Both sides match now. In 2016, a tough family year, I got my first tattoo that says “we just don’t know”.
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Thank you Sara! I’m so sorry to hear of your recent cancer scare – again!
Luckily, your regular mammogram caught this early – I hope you continue to heal, and will enjoy many more worry-free years ahead.
Take care. . . ♥
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Happy heartiversary, Carolyn! Wishing you many more. ❤️
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Thank you so much, Dr. Anne! ♥ ♥ ♥
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Celebrating milestones is so incredibly important. Congratulations!!!
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I think so too! Thanks Abigail! ♥
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