The weirdest stuff I’ve learned about women’s heart disease

~ Carolyn Thomas

by Carolyn Thomas   ♥   @HeartSisters

You know it’s Heart Month when scary facts about the dangers of heart disease start flooding our screens. But that kind of Heart Month messaging is so pre-COVID – and before we learned the shocking results of the American Heart Association’s national survey.  This survey found that women’s awareness of heart disease has actually declined over the past decade – NOT improved at all! despite all the inspiring Red Dress-awareness-raising-Go-Red-for-Women campaign efforts out there.  

So instead of repeating more scary statistics as if I hadn’t read that survey’s results,  I’m once again simply offering some weird stuff I’ve learned over the years about women and heart disease:    .         .    

1. Weirdest example of the cardiology gender gap:  This 2018 study tracked four years of National Emergency Medical Services Information System data. Researchers found that female heart attack patients who had been transported by ambulance to the Emergency Department after calling 911 for help were less likely than male patients to receive recommended cardiac treatments en route (even aspirin!) – and also significantly less likely to have the ambulance sirens or flashing lights turned on.

2. Weirdest heart attack symptoms in women:

  • “My lips went numb”
  • “My only cardiac symptom was a persistent cough”
  • “My bra felt too tight.”

3. Weirdest husband-and-wife heart attack experience:  One of my readers had a heart attack just eight days before her husband’s heart attack, which was how she learned firsthand the differences between how men and women can be treated.

4. Weirdest out-loud comments from cardiologists to actual female heart patients:

  • “Honey, you have recently moved away for the first time. You are probably just lonely for your mother. I would go and have a baby if I were you!”  (aortic and mitral valves replaced, pacemaker implanted)
  • “You’re going to need a new job where you can lay down a lot. How about a mechanic? Or a prostitute?” (Prinzmetal’s Variant Angina)
  • “That sharp pain is probably just psychological.” (three stents, Peripheral Artery Disease)

5. Weirdest way the human body can help to stop a heart attack all by itself:  In about one-third of heart attack patients, the tiny normally closed blood vessels called collateral arteries can wake up, open wide, and enlarge enough to form a kind of detour around a blocked coronary artery, thus providing an alternative route for blood flow to feed the oxygen-starved heart muscle. Do-it-yourself bypass surgery! 

6. Weirdest typo to confuse an unsuspecting public:  Dr. Colin Baigent is a co-author of a 2002 study looking at whether taking a daily low-dose aspirin helps to prevent a heart attack, published in the British Medical Journal (BMJ). As Dr. Baigent told a HeartWire interviewer: “In the original print edition of the BMJ paper, the final sentence reads: ‘For most healthy individuals, for whom the risk of a vascular event is less than 1% a year, daily aspirin may well be appropriate.” 

But here’s the problem: that last word was a typo. An official correction swiftly issued by the BMJ noted that the final word should have been, in fact, “INappropriate”.  It was never the researchers’ intention to say that daily aspirin in low-risk patients was a good idea. Too late!  Despite that correction (and a BMJ apology), taking a daily low-dose aspirin to help prevent a heart attack has become normalized among low-risk adults – even with more recent studies offering no evidence that aspirin works for this population.

7. Weirdest cardiology conference findings: Whenever I have attended the Canadian Cardiovascular Congress in Vancouver, it’s been with an accredited press pass so that I can interview researchers presenting papers on women’s heart disease issues at the conference. But at my first CCC event in 2011, I learned that, out of hundreds of cardiology papers being presented at this conference all week, only four studies were about heart disease in women – a reality which then became the Big Story of the entire event, and – weirdly – really helps to explain #8.

8. Weirdest timing of an official scientific statement from a major heart organization: On January 31, 2016, The American Heart Association released a scientific statement on women’s heart attacks, concluding that, compared to men, women tend to be under-treated during their heart attacks. That’s pretty upsetting news, but I couldn’t decide which part of the statement upset me more:  that particular conclusion (which we already knew from lots of emerging research), or the fact that this was the first ever official scientific statement in the 92-year history of the AHA to focus on women and heart attacks. Yes, you read that right. . . 

NINETY-TWO YEARS!

9. Weirdest mismatch of answers to the same question about what it’s like to live with heart disease:  This Italian study asked three groups of people with an interest in heart failure (the patients, their family caregivers, and their cardiologists) to describe what it’s like to live with this diagnosis. Over 80% of the families used words like “fear” and “anguish”, yet 70% of the cardiologists used words like “optimistic”.  That is weird.

(And by the way, when will cardiologists come up with a new name that’s less hurtful to patients and their families than heart FAILURE?)

10. Weirdest research studies containing NO WOMEN:  This turns out to be a long and crazy-weird list, but my personal favourite was the Baltimore Longitudinal Study, which included no women for its first 20 years – because the building in which the study was conducted had only one toilet.

♥

Now, back to the AHA national survey results:  they confirm what communications experts like Ann Christiano and Annie Neimand at the University of Florida have been warning us about. As they wrote in their report called Stop Raising Awareness Already,  published in the Stanford Social Innovation Review:

 “Because abundant research shows that people who are simply given more information are unlikely to change their beliefs or behavior, it’s time for activists and organizations seeking to drive change in the public interest to move beyond just raising awareness.”

♥

NOTE from CAROLYN:   I wrote much more about weird things I’ve learned about women’s heart disease in my book, “A Woman’s Guide to Living with Heart Disease“ , published by Johns Hopkins University Press.  You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher (use their code HTWN to save 30% off the list price).

Published by Carolyn Thomas

18 thoughts on “The weirdest stuff I’ve learned about women’s heart disease”

  1. As a man, I think your comments are great. A couple of years ago when everybody thought I was going to die I came across some of your articles regarding nitro.

    Because one cardiologist had overlooked a 90% blockage in the left ventricle I walked around for two years wondering what the hell was wrong. I finally got another cardiologist who knew what he was doing and said we need to fix this right away.

    I did have a heart attack July 1 of 2018. Subsequent to that I haven’t been back to the hospital in three years. I carry around the nitro tablets in my pocket. And I take extended release isosorbide and have no chest pain all day long.

    I take small amounts of carvedilol I guess that’s for contractility and I feel basically good. I’m working every day and I want to thank you for all the good things that you write about it, sure has helped me.

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    1. Hello Bob – thanks for your kind words about my blog. I often hear from men who read my posts – in so many ways, once we become heart patients, our shared experiences as we adjust to this new way of life are remarkably similar, both males and females. I’m sorry you spent two years suffering before you had the good fortune to come across that second cardiologist. Glad that you’re doing well now!

      Take care, and stay safe. . .

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  2. One of the things that is immensely effective is to do something exercising and then relaxing. It may be shortness of breath, tightness of mouth and stomach. It may be that what is induced by exercise and then relieved by relaxation is possibly a heart condition.

    Shadowens says it will help you find trends that save your life and hold your family history in mind.

    You know, your risk factors are established, and your body is a health advocate that can reduce your risk and hopefully reduce the statistics.

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    1. Hello Obaid – as Mayo Clinic cardiologists told us during my WomenHeart Science & Leadership training: any symptom “between neck and navel” that comes on with exertion, and goes away with rest should be considered as cardiac unless proven otherwise.

      You’re so right, some of our risk factors are ones we have no control over (for example, a strong family history of heart disease at a young age – under 55 for male relatives, under 65 for female) but many others – like diet, exercise, smoking – are ones we do have control over.

      Take care, and stay safe. . .

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  3. I’ve decided to switch to a female cardiologist. I had quadruple bypass in 2004 and 2 stents since. I happened to see a female who was covering the practice who hadn’t ever seen me before and did a routine ECG and showed me her concern.

    I then went in for a cath and had a stent placed right beside an existing stent that had an 80% blockage right past it.

    Do any of your readers have more faith in female vs male docs for us heart patients? I’m 78 y/o and have been so fortunate so far!

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    1. Your question is a very common one, Barb. Many of my female readers have expressed a similar preference for a female cardiologist. Unfortunately, these female docs may be rare birds – cardiology is one of the most male-dominated medical specialties (only about 13% are women, as I wrote about here. )

      An interesting 2018 study actually reported that survival rates were two to three times higher for female patients treated by female physicians in the Emergency Department compared with female patients treated by male physicians. The exception to those findings: survival rates were higher only in the male physicians who worked alongside female colleagues.

      So you may be on to something! Every doctor-patient relationship is unique, of course – personally, I have a female GP, plus a male cardiologist and a male pain specialist – and I admire and trust every one of them!

      Take care, and stay safe . . . ♥

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    1. Thanks for that reminder, Pauline – I too thought of my Red Dress pin as my sisterhood badge! Sometimes a grocery cashier or store clerk would comment on it or ask where I got it. And for many years, I gave out Red Dress pins to my “Heart-Smart Women” presentation audiences.

      Take care, and stay safe. . . ♥

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  5. I came in late even knowing there was a red dress campaign. I was so flooded with pink ribbons, I barely noticed.

    To me, seeing the red dress pin, was merely a reminder that “By the way women get heart disease too”.

    At a minimum, primary care providers should be conducting an annual risk assessment on women and men that looks at family history, age, life style, blood work, calcium scan, etc. and tells a patient “At this moment you (man or woman) have a 1 in 5 chance of having a heart attack in the next 5 years… here is what we can do to help prevent that, here are the symptoms that would be concerning.”

    Then give a personalized cardiac awareness and prevention plan…which is followed up on yearly or more often, depending on risk category.

    Maybe you and Mayo and AHA can develop a module and supporting materials for PCPs and cardiologists? Sorry not trying to make more work for you. LOL

    The Truth is ( I think ) women value information given in a one on one Doctor/Patient situation more than they do public awareness. The public awareness may prompt them to ask their doctor a question but then if the doctor answers very vaguely then the women figure it must not be important.

    If the doctor only has time to diagnose and write prescriptions, they need to hire a Nurse Educator that meets with every patient with a new diagnosis.

    Blessings! I enjoyed the weird tidbits.

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    1. Hello Jill – I wonder how often that “minimum” expectation of monitoring women’s cardiovascular risk can actually take place? Discussions require appointment time and follow-up, and in-clinic Nurse Educators require money, admin support and office space. My own excellent GP, for example, in a group practice with 5-6 other docs, doesn’t have a Nurse Educator on staff.

      We do have a number of officially recommended cardiovascular risk calculators designed to be used by physicians alongside their patients. (The one developed at the University of British Columbia via their Therapeutics Collaboration Education initiative has had good reviews from docs).

      But there are other risk calculators in use that are simply not reliable. When the British Medical Journal (BMJ) asked me to write a review of the new JBS3 cardiac risk calculator for the UK’s National Health Service six years ago, I answered all the tech prompts just as I would have answered the week before my 2008 heart attack. The calculator reassured me that I “could expect to live to 83 without a heart attack or stroke.” Wrong by three decades…!

      But to my knowledge, no official risk calculator currently is use includes women’s unique cardiac risk factors (e.g. pregnancy complications, Polycystic Ovary Syndrome, early onset of menopause, etc.)

      I suspect that the superior minds at Mayo Clinic and the AHA will have to come up with their own solutions here. . . 😉

      I agree 100% that we will pay closer attention to a personal recommendation from a trusted person with whom we already have a relationship, compared to an impersonal public service announcement.

      Take care, and stay safe. . . ♥

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  6. Part of the awareness problem lies with the cardiologists themselves, but it begins with the Primary Care Providers who don’t try to educate their women patients about heart disease.

    Then, after many, many tests that finally provide irrefutable proof that what’s wrong really is — OMG! who’d a thunk it!! — a serious heart problem, there are the cardiologists who avoid discussing with a woman the details of her disease because there’s still sooooo much “Don’t you worry your pretty little head about that” going on out there.

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    1. Hello Sandra – I wonder about this as well, and particularly during this pandemic.

      I haven’t seen my own family physician in person for almost a year now, and all “appointments” (mostly just for routine med refills) are via scheduled phonecalls (the last two with a locum who was filling in for my doc), so as you can imagine, precious little chat about general heart health other than, “How many times a week would you say you need to take nitro for your angina?”

      And I’m a longtime heart patient with a known cardiac history! I can’t imagine a non-heart patient – even during Heart Month! – and with all the weirdness of virtual visits, getting much “education” these days.

      Re your last point: although this ‘don’t worry your pretty little head’ attitude is certainly changing with each batch of new med school graduates (oh, please let that not be just wishful thinking on my part!), I suspect that this patronizing attitude is a throwback to the time in medicine when it was considered more important, unfortunately, to try to gently reassure the patient rather than engage us in new-fangled trends – like shared decision-making?

      I’ve often advised women who don’t understand what has just happened to them, or what their doctors are recommending, to refuse to leave the doctor’s office until a clear, jargon-free explanation is discussed and understood. Or, in COVID-speak, don’t leave your virtual visit!

      Take care, stay safe. . . ♥

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      1. A lot of docs get antsy about “too many questions”; others just don’t want/cannot take the time to explain in detail what’s going on.

        Oh! I forgot to mention the third kind! These are the ones who, when faced with a complicated problem [such as coronary microvascular disease] that they don’t know how to solve, just go silent.

        If it weren’t for this blog and your wonderful book, I’d still be floundering my way around in the dark about my problems.

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        1. That “third kind” reminds me of the physician of one of my readers, who told her flat out: “I don’t believe in coronary microvascular disease!” – as if they’d been discussing Santa or the Tooth Fairy…

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        2. Sandra, this literally had to happen with Hypertrophic Cardiomyopathy also.

          A woman with severe disease and a sister that died from the disease started a nation-wide movement to educate MDs to look for HCM and treat it properly.

          It was an HCMA message board that guided me to get proper treatment.

          Thank You Carolyn for all you do.

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