by Carolyn Thomas ♥ @HeartSisters
A number of my readers contacted me recently to make sure I’d seen Gretchen Reynolds’ new Washington Post article (THANK YOU, dear heart sisters, for thinking of me!) For those who missed it, I want to revisit some key messages from a tragic story about Gretchen’s friend, Anne – her hiking/mountain biking/distance running (also non-drinking and non-smoking) buddy. Gretchen described 61-year old Anne as “kind and capable, modest and fit”. She died suddenly last month. Anne’s cause of death, as Gretchen wrote in her regular column in the Post, was “a bolt-of-lightning heart attack” : .
“One afternoon, Anne rode her bike, climbed off, and complained of nausea and fatigue. Her right arm ached. Blaming indigestion, she took Tums. They didn’t help. She vomited. Her husband suggested Urgent Care. She declined. The next morning, Anne collapsed in their bathroom and could not be revived.”
Gretchen added:
“Anne should have been safe. She did the right things. She did what I do. She did what I tell everyone to do!”
Cardiologist Dr. Martha Gulati at Cedars-Sinai Heart Institute was quoted throughout Gretchen’s article. She’s associate director of the Barbra Streisand Women’s Heart Center and president of the American Society for Preventive Cardiology (plus – full disclosure! – she also wrote the beautiful foreword to my book!) Here’s what she said in her interview with Gretchen Reynolds:
“There is no doubt that, on a population level, physical activity is extremely good for us and our hearts. People who exercise, people who are physically fit – those are the people who are most likely to stay alive. But on an individual level, fit, healthy people can and do develop heart disease, often silently. They can and do die of it, often suddenly. Any of us can be struck by lightning.”
When I was attending the WomenHeart Science & Leadership patient advocacy training at Mayo Clinic, our group of 45 women (aged 31 to 71, all of us living with heart disease) included vegans, triathletes, and even one very surprised physician. “How could this happen to ME, of all people?” was their shared gobsmacked protest.
This belief that if we do everything right, every day, we can somehow make sure bad things won’t happen is predictably pervasive. We tend to rail against the unfairness of life when this belief is challenged by tragedy. See also: There is No “Fair Fairy” in Life.
Yet I still asked that “Why me?” question after my own widow maker heart attack. I too had been a distance runner with no known cardiac risk factors. It took two years, post-heart attack, for me to accidentally learn in a New York Times interview with OB-GYN Dr. Graeme Smith that the preeclampsia I’d survived during my pregnancy years earlier meant a 2-3 times higher risk of heart attack down the road. See also: Pregnancy Complications Strongly Linked to Heart Disease.
It’s discouraging that we can do all the right things, as Gretchen’s friend Anne had done for decades, yet still succumb to heart disease. We do know that certain lifestyle decisions (to quit smoking, for example) – can in fact lower our risk of future heart disease – but we also know that the broad range of cardiac risk factors (diet, stress, family history, high blood pressure/cholesterol, etc.) can combine to create a perfect storm. (Read Improve Your Odds to learn more).
I’ve written several articles (listed here) about something important mentioned in Anne’s story. Cardiac researchers call it treatment-seeking delay behaviour. According to her friend Gretchen, Anne’s husband had tried to convince her to seek medical help at an Urgent Care Clinic the night before she died. But she declined to go. Nobody can know for sure if she would still be alive today if she’d taken his advice.
This Oregon study is one of many that have identified the six most common patterns of decision-making delays between the time that women first know that something is very wrong and the time when we make the life-saving decision to seek cardiac help.
These six patterns are:
- knowing and going (women acknowledged something was very wrong, made a decision to seek care, and acted on their decision within a relatively short time, typically 5-15 minutes)
- knowing and letting someone else take over (women told someone about their troubling symptoms and were willing to go along with recommendations to seek immediate medical care)
- knowing and going on the patient’s own terms (women wanted to remain in control, were not willing to let others make decisions for them, and openly acknowledged that they did not like to ask others for help – these are the women who drive themselves to Emergency!
- knowing and waiting (women decided that they needed help, but delayed seeking treatment because they did not want to disturb others.
- managing an alternative hypothesis (women decided symptoms were due to indigestion or other non-cardiac causes, and were reluctant to call 911 “in case there’s nothing wrong and I’d feel like a fool” – until their severe symptoms changed or became unbearable.
- minimizing (women tried to ignore their symptoms or hoped the symptoms would go away, and did not recognize that their symptoms were heart-related)
Remember that these patterns are common in both typically severe Hollywood Heart Attack signs as I experienced during my own heart attack (central chest pain, nausea, sweating and pain down my left arm) and when women’s symptoms are what doctors used to call “atypical”. Coincidentally, Dr. Gulati was chair of the writing committee of last year’s long-awaited Chest Pain Guideline – which encourages her colleagues to stop using the word “atypical” to describe women’s cardiac symptoms. These are “atypical” only if compared to men, but they’re perfectly typical in women.
Delaying treatment is especially dangerous when symptoms are described as new or very unusual. But you know your body. You know when something is just not right. What I didn’t know during my own heart attack was that women’s cardiac symptoms can come and go – and then come back again, sometimes for days. What I also didn’t know was that I’d be able to walk and talk and think and drive and go to work despite increasingly serious cardiac symptoms day after day. See also: Heart Attack Symptoms: What Women Expect vs. What We Get
Chest pain is the most common cardiac warning sign in both men and women. And as Dr. Gulati explained, chest pain as described in the new guideline does not always mean a heart attack, but it does merit immediate medical attention:
“ The majority of chest pain is not life-threatening. And in fact, the majority of chest pain is not cardiac – instead due to respiratory, musculoskeletal, gastrointestinal, psychological or other causes.
“But when it IS cardiac, it can be deadly. We have such good treatment, but time is heart muscle. The sooner we see you, the sooner we can treat you.”
And many women don’t use the word “pain” to describe their chest symptoms. Other warning signs that could be heart-related include these:
As Dr. Gulati explained to Gretchen Reynolds:
“If their husbands had those symptoms, women would take them to the ER. I always say, if you would take someone else to the hospital with those symptoms, make sure you get yourself there, too.”
Gretchen Reynolds’ article about the death of her friend Anne begs the question: should we just give up regular physical activity if it can’t even protect us from heart disease?
That question is an example of what behaviour scientists call an “avoidance goal” (e.g. I’m going for a long walk so I won’t become sick someday). Far better instead to undertake “approach goals” (I’m going for a long walk so I can sleep, look and feel better”). There is simply no downside in moving our bodies every day as we were meant to move them, improving every cell from top to toe.
And regular exercise is not a one-shot cardio-protective tonic, but a part of the many ongoing personal choices we make each day. For some women living with chronic illness including heart disease, exercise may look very different than the strenuous aerobic outings of Gretchen and her late friend Anne. For these women, it’s all about small steps, as the late tennis legend Arthur Ashe once advised:
“Start where you are, use what you have, do what you can.”
♥
*Image: Anne, Monterey Bay Half Marathon, 2017. (Photo: Thomas Blog)
♥
Q: Were you or your family shocked by your own cardiac event?
NOTE FROM CAROLYN: I wrote much more on women’s cardiac risk factors in my book, “A Woman’s Guide to Living with Heart Disease” (which includes Dr. Martha Gulati’s beautiful 4-page foreword). You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price).
Heart Sisters 
Good article, Carolyn!
Sadly, the (non-medical) athletes who are heading into their first heart attack would not be reading information about heart attacks. Anne’s story needs to be in Runners World magazine. Perhaps you could submit an op piece to share this blog article.
Curious as to the cause of Anne’s heart attack. Her delay may have been due to no “run up” typical symptoms of heart problems. SCAD presents itself this way – with no warning.
So your mind and peers see you as healthy and athletic – no way you could be having a heart attack.
So the mind processing BY ALL is that the logical explanation is the horse (indigestion, muscle strain, flu, etc) instead of the zebra (SCAD).
Another point to bring forward is that heart attack symptoms can be different in athletic healthy people. An athlete’s heart is strong and is sized for the performance demands. When the athlete is wringing out their performance demands, they might get chest pains that stop when they stop running (if they are a runner, etc). Or they might not get chest pains. They might just be winded. Or their arm hurts. But when they stop the activity, their heart is basically in hibernation. The symptoms go away or are so faint that it’s ignored. Sort of.
This person knows their body and they know they are focusing on what feels different – nothing they can put their finger on. It’s just a whisper. . . but their brain is spending time trying to figure it out. That brain activity is your master computer, telling you that something doesn’t compute is also a warning symptom.
Creepy scary. Coaching rule: if you don’t measure your performance, you aren’t managing it. Log not only your mileage/times/strength – also measure your BP/pulse/oxygen resting and before/after training. Every single day. Pulse and oxygen are critical predictors and you need to know your historical baseline to be able to capture the difference.
When you show up at the ER with your performance data, it’s pretty hard for the staff to send you home. That data will be considered in making their decisions. At the very least, it proves to the harried medical staff that you are responsible.
When at the ER, always demand at least two troponin tests (hours apart). The staff will be tempted to send you home or into observation after one high normal troponin result because you don’t have the usual markers of pending disaster (diabetes/obesity/ drug use/inactivity) combined with no chest pain or only exertion pain.
They will likely refer you to a cardiologist for a workup. In my friend’s case, I explained to the ER doctor that I had zero pain with both of my heart attacks and now have multiple stents in three arteries. . . And then suggested they do the second troponin before making a decision on care. The second result was screeching high and he was admitted for stenting.
Lastly, ER departments are busy these days. If you drive yourself, you get in line to be triaged. Not good because time delays kill heart tissue and brain tissue (strokes). Tell the security guard upon arrival that you are there with a heart attack. The guard will wheelchair you and move you to the triage nurse. Ditto with strokes. You get a pass on queuing up. Use it. You are advocating for your quality of life going forward. Be responsible!
Apologies for the lecture. It’s not easy living on Planet Heart. You don’t want to be here.
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Hello Anne – no apologies required for such a comprehensive overview of athletes and cardiovascular disease! Excellent points, all. And thank you especially for the practical tips on how informed patients can often help themselves get an appropriate diagnosis in Emergency.
Speaking of excellent, for those non-medical athletes heading for their first heart attack who might be interested in reading more (given the wide publicity recently about the tragic cardiac arrest of the Buffalo Bills player #3, Damar Hamlin), I recommend an excellent book about endurance athletes and heart disease called “The Haywire Heart”.
It’s written by cardiologist Dr. John Mandrola (a competitive runner and cyclist who is also an atrial fibrillation patient himself), Lennard Zinn (former member of the US cycling team) and Chris Case (a runner, cyclist, neuroscientist and managing editor of VeloNews).
This book basically reminds us all that “heart conditions strike athletes, too” and “too much exercise can kill you” and “Many endurance athletes are damaging their hearts by repeatedly pushing to extremes”. Highly recommended for all serious athletes about a serious issue.
You’re so right, Anne. It’s not easy living on Planet Heart!
Take care, stay safe. . . .♥
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Thank you for your well written reminders.
I too was fit and healthy, never smoked, wasn’t overweight and the same age as Anne when I started having what I now know was exercised-induced angina.
What I didn’t know at the time was that genetics play such a huge role in one’s risk of heart disease. My Dad had a heart attack at 58. Not only do women need to know about the signs of a heart attack and heart disease, they also need the confidence and persistence to convince Doctors that there is something seriously wrong.
I had a Cardiologist dismiss my angina symptoms because I had a “negative” nuclear stress test 3 months earlier. Only because I was persistent did I eventually have another echo stress test which showed I might have a small blockage. A subsequently angiogram showed significant blockages in 3 main heart arteries and within 8 days I had triple bypass surgery!
I’m extremely fortunate that I never had a heart attack and even more so that it didn’t happen when my husband and I were hiking alone 2 hours by foot up a trail in Crete. I’m now over 12 years post-surgery and also have a pacemaker.
I am so thankful for your blog as it has been a great help to me. especially dealing with issues I had with my pacemaker.
Happy New Year!
Sincerely,
Linda
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Hello again Linda – thanks for sharing your own experience. It struck me while reading your story that persistence may indeed be the most important tool patients need in getting an appropriate diagnosis and treatment! Unfortunately, being dismissed meant unnecessary suffering and worry for you. I can’t imagine what might have happened had your symptoms hit during that hike in the middle of nowhere!
Glad you’re still here! Take care, and Happy New Year to you. . . ♥
(READERS: learn more about Linda’s dramatic story of having her pacemaker implanted – and then replaced 19 months later).
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Boy this article brings back memories of my own stubbornness.
Not going to the ER when my arm went numb, or when I had pain in my collarbone going up steps. Did not want to worry my family. And when I had open heart surgery triple bypass only when I went through it. How life can change in an instant!
Jan 21st will be 1 yr. I am wonderful now, and have listened to my body, and my wonderful doctor who does not let anything slip past her.
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Hi Susan – I’d say that being stubborn is very common when we are in denial about what serious cardiac symptoms mean!
Not so much stubborn, really, but basically minimizing the severity of signs that should be alarming us into action.
And not wanting to worry other people? VERY common! I got on a plane despite my textbook heart attack symptoms and flew five hours across the country, but kept my symptoms a secret from my family because I didn’t want to ruin my mother’s birthday celebrations! That sounds like crazy talk now looking back, doesn’t it? But at the time, it seemed that not making a fuss somehow made sense. . . That’s why I like Dr. Martha Gulati’s advice as mentioned in her Washington Post interview:
“If you would take someone else to the hospital with those symptoms, make sure you get yourself there, too!”
I’m very glad you survived – despite your delay in seeking help. January 21st will be your first ‘heartiversary’. This is a real milestone in the life of any heart patient. Make sure you and your family plan a nice celebration on that day to mark this important milestone. You and your “wonderful doctor” are doing great so far.
Take care, stay safe out there. . . ♥
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Healthy lifestyle and exercise makes for a strong heart. Just make sure to watch your blood pressure as you age because a strong heart + high blood pressure can blow out your circulatory system in the form of aneurysms and aortic dissections. Make sure that your blood pressure readings are in a good range for you and not just within the “what is considered healthy range” for the average person. My doctors made that mistake with me and I’m suffering the results.
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Hello Robin – I’m not a physician of course, but my understanding is that there does seem to be a link between high blood pressure and aneurysms or aortic dissections. And we know that certain sports are more risky in spiking blood pressure to dangerous levels (like weightlifting, for example, which requires intense straining and can produce acute rises in blood pressure). Yet many studies also suggest that both aerobic exercise and resistance exercise are recommended for most people to reduce or delay development of high blood pressure.
All things in moderation, as they say. Take care, stay safe. . . ♥
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Thank you for this well-written reminder of the points you have so eloquently made in your book, blogs and newsletter. It’s a great summary.
This article describes many aspects of my own experiences. I will share it with friends and family, who were as shocked as I was when I had my own massive widow maker (100% blockage of LAD, 10 days before intervention). I am now living with lots of damage and issues, but alive!
Hopefully putting this info in front of others will help them avoid my journey, or at least have better outcomes and avoid the worst.
I have been encouraged and strengthened in great part because of your writings.
Happy and Healthy 2023 to you!
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Hello Coastal Artist and thanks so much for your kind words. Many women have shared this kind of experience – yet most of us feel quite alone when it happens, as if we must be the only ones to get through this.
That common reaction isn’t helped by the overwhelming sense that bad things simply won’t happen to us!
I wish you a happy, healthy year ahead, too!
Take care, stay safe out there. . . .♥
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