Two kinds of heart patients, and the third kind that aren’t patients – yet!

by Carolyn Thomas       @HeartSisters

The shocking 2019 American Heart Association National Survey results released in September reported that women’s awareness of heart disease has actually declined during the past decade. As my regular readers already know, I felt sick when I read this. Barely half of the women surveyed, for example, could recognize “chest pain” as a possible sign of heart attack. It took a wee lie-down before I was able to re-evaluate my own awareness-raising efforts here on Heart Sisters.  At first blush, it appeared to me that I’m aiming to reach two specific kinds of women.    .     . 

The first group includes freshly-diagnosed newbies, the ones whose strange and frightening first symptoms are recognized as cardiac in origin, who seek emergency help, are hospitalized, treated, and then finally sent back home, overwhelmed and stunned. Then there are the veterans like me, whose cardiac events were diagnosed and treated a while ago, who by now have some lived experience and continue to speak and learn more about what happened and why.

When I look at the most popular Google search terms tallied by my blog host WordPress (these are the words you type in that bring readers to this site in the first place), the top terms include things like “Am I having a heart attack?”  The posts that Google then takes them to here include this one, the most-read blog post since I wrote it in 2009:  “How Does it Really Feel to Have a Heart Attack: Women Survivors Answer That Question.  Its readers are what I call my 3 o’clock in the morning folks, the newbies who are suddenly experiencing unusual symptoms so scary that they turn to Dr. Google – and find this post.

When I look at my reader comments, however, it’s clear that most comments are typically left by that second group, the veterans who have been living with heart disease for some time. Readers who already have lived experience speak up in response to posts about real life issues like post-stent chest pain, pacemakers, post-heart surgery trauma, living with crushing fatigue, or why their heart disease was misdiagnosed. Many of those women are regular subscribers by now who have found their own generous community of “veterans”.

I knew from the first day I launched this blog that it wasn’t meant to be an encyclopedic text on All Things Cardiac. I also knew that many skilled healthcare professionals far above my pay grade were already writing about cardiac risk factors and how to address them – so I wrote less on those issues and more on what others weren’t writing about.

When I was a freshly-diagnosed newbie myself in 2008, I too went online, desperate to figure out how I’d been misdiagnosed with acid reflux in mid-heart attack and sent home from Emergency – despite my textbook cardiac symptoms of central chest pain, nausea, sweating and pain down my left arm. As I wrote in the preface of my book:

“I wasn’t looking for info on cardiac risk factors or heart-healthy recipes or bad cholesterol. What I desperately wanted to find was information written for and by women like me.”

European researchers, among many others, suggest that we not only need to adjust physically to an unexpected medical diagnosis, but our whole psychological and social self-concept requires adjustment, too.(1)  They’ve identified predictable phases of recovery, including slip-sliding back and forth in a two-steps-forward-and-three-steps-back dance. During the early weeks and months, phases go from the newbie’s distressing hypervigilance while waiting for “the other shoe to drop” to the veteran’s confident ability to better plan for the future.

In other words, overnight we can go from being a once-healthy person to suddenly becoming a sick patient – a seismic change that nobody can psychologically prepare for.  See also: To Just Be a Person, and Not a Patient Anymore

My veteran blog readers frequently point to their one-year anniversary, post-cardiac diagnosis (what I like to call their first “heart-iversary”) as one of the first meaningful milestones along this road to recovery. Not necessarily our old normal, but far more “normal” than we felt while worrying we’d never see normal ever again.

This recovery can vary, of course, person by person; some people seem to recuperate remarkably uneventfully post-diagnosis, while others take a whole lot longer to feel even remotely like their old selves.

Many physicians, by comparison, seem to use a different type of predictive crystal ball when their heart patients ask them, “Doc, when will I feel like ME again?” 

Physicians may describe, usually in terms of short little weeks, a minimal recuperative time period after which their patients can happily return to work, or start driving, or have sex, or fly off on holidays once again.  See also:A Patient, a Caregiver and a Doctor Walk into a Bar”

So by the time most of my veteran readers find their way here, they often have stories and opinions to share about their lived experience so far, especially the important quality-of-life issues that, for many reasons, they may NOT be talking about to their cardiologists.

Which brings us back to the disturbing results of that AHA National Survey (you can read about those survey results here: Women’s Heart Disease: An Awareness Campaign Fail“). 

If raising awareness by sharing information about women’s heart disease is NOT WORKING to raise awareness (an official AHA commentary written by three respected cardiologists bluntly called the decline in awareness “a decade of lost ground”), then why would I want to continue to share information here?

But this AHA survey was in fact aimed at a third group of women: those who are not heart patients.  Yet.

What I know about this third group, because I too was a member of it for most of my adult life, is that women are no more likely to be interested in learning about heart disease than they’d be in any other subject they believe is irrelevant to them.

So the reality seems to be that I write for three types of women – because I’ve been in all three groups myself. And I have long observed here that my writing topic focus has evolved over time to reflect how I’ve been changing, too – and how those topics also reflect what I wish I’d known (but like many other female heart patients, didn’t even think to ask about) way back when.

It’s why I continue, not surprisingly, to write about emerging studies on misdiagnosis in women’s heart disease, for example.

Study after study, report after report, scientific statement after scientific statement continue to confirm that women heart patients are at significantly higher risk than men of being under-diagnosed – and worse, often under-treated even when appropriately diagnosed.  All women who have been misdiagnosed already know this, while at the same time, not all physicians believe or even entertain that reality as a possibility.  I know this because these physicians have openly called me names on social media when I do write about misdiagnosis. If they did believe the research, we’d have mandatory reporting of diagnostic error as a routine issue of public safety.

Not being taken seriously is behind this and other examples of the cardiology gender gap. When researchers analyzed four years of data from the National Emergency Medical Services Information System, they found that, when an ambulance is transporting a female heart patient to the Emergency Department, EMS staff are far less likely to have their sirens or flashing lights turned on compared to when a male heart patient is in the back of the bus.(2)

How is that even possible?

This and many other examples of gender bias in cardiology have been going on for years, decades, generations – and this must stop.

I hope to see it stop within my lifetime, and I hope that I can do my own small part in helping to stop it. I don’t know how to do this except through my writing and public presentations. Whether it’s reminding our veteran heart patients to speak out about what they’ve learned, or encouraging our newbies to pay attention, both groups need to become their own best advocates if we’re ever going to help get that third group of women up to speed.

Because as cardiologist Dr. Sharonne Hayes, founder of the Mayo Women’s Heart Clinic, wrote just last year on Twitter:

1. G. Graffigna and S. Barello, “Spotlight on the Patient Health Engagement model (PHE model): a psychosocial theory to understand people’s meaningful engagement in their own health care.” Patient Preference & Adherence, July 19, 2018. 12:1261-1271.
2. Lewis, Jannet F. et al. “Gender Differences in the Quality of EMS Care Nationwide for Chest Pain and Out-of-Hospital Cardiac Arrest.” Women’s Health Issues, December 10, 2018.
Image:  Mabel Amber, Pixabay

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NOTE from CAROLYN:   I wrote more about becoming a patient in my book, A Woman’s Guide to Living with Heart Disease , published by Johns Hopkins University Press in 2017.  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 20% off the list price).

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Q:  How are the concerns you have as a veteran heart patient different from when you were a newbie?  

See also:

14 thoughts on “Two kinds of heart patients, and the third kind that aren’t patients – yet!

  1. Hi Carolyn,

    Once again, the parallels between our writing worlds are apparent.

    Like you, I also write for the newly diagnosed patients (in my case, the breast cancer patients) who are busy Googling away in search of information from someone who’s walked the walk, the veterans who often long to share their “real” stories/struggles/tips/advice and those yet to be diagnosed. Our topics are not the same, but our goal is – to reach all three groups and to somehow make a difference.

    Gotta say, I found that tweet you shared from Sharonne Hayes, MD to be troubling, though not surprising. Why is it that in the year 2020, women still so often struggle to make doctors believe them – about anything? So unacceptable.

    Great post. Thank you.

    Liked by 1 person

    1. Hello Nancy – you’re so right! We both write for distinct groups, hoping to “reach all three groups and to somehow make a difference“.

      That’s what was so gut-wrenchingly difficult for me while reading the American Heart Association 2019 National Survey results which basically concluded that what I’m personally trying to do over here is not even making a dent – especially in that third group, the “not-yet-patient” women whose awareness significantly DECLINED over the past decade.

      A more optimistic take on that conclusion might be that the first two groups ARE in fact likely finding benefit from peer support platforms like yours and mine (but again, we have only anecdotal evidence like personal feedback to determine if that’s actually true).

      I agree with your shocked assessment of Dr. Hayes’ troubling statement. As one of my readers once said, “Men do NOT have to fight to be believed!” And as you rightly ask, how is that even possible in 2020? Good grief.

      Take care, stay safe… ♥

      Like

  2. Hi Carolyn, Like you I am a “veteran”. I have microvascular heart disease as well as other cardiac issues. The microvascular disease has been by far the worst and most difficult to manage.

    I had a horrific chest pain – ER admission early last month. What was better about it was that when I told the ER physician that I had microvascular disease and that this was worse, their response was NOT one of dismissal or minimization.

    After ruling out all of the other horrible things that might need to be addressed I was admitted and begin treatment with Ranolazine, lots of oxygen and Nitroglycerin on a frequent basis.

    My care was excellent from the nursing staff, the cardiology service and the internal medicine service. I don’t know exactly how the internal medicine physician explained it to the staff at their daily rounds but they all seemed to have a much better understanding of the very real and serious challenges we face with this diagnosis. A far better experience than previous ER visits !

    I don’t how that progress came about but I am grateful for it !

    Liked by 1 person

    1. I just love hearing stories like your experience, Linda!! That is exactly how a trip to Emergency SHOULD proceed – but rarely does, in my experience, at least when coronary microvascular disease is the culprit.

      It’s interesting too that, because you’d had previous trips to the ER, you were better able to accurately assess a marked improvement in the way staff responded to your condition. This is fantastic progress… If only all hospital staff were as well-informed.

      I just eavesdropped on a Twitter conversation between two Emergency docs about their use of nitro: very interesting! They were discussing the pros and cons of what kind of pain relief to offer a patient suffering the ‘refractory angina’ pain of MVD (e.g. IV nitro vs. nitro spray under the tongue) and the consensus seemed to be “lots and lots of nitro sprays”. That too is, in my opinion, a significant sign of being open to trying new things and then observing which things seem to help – as opposed to sending the patient home, untreated!

      So much better than the physician who told one of my readers (who had asked him if her horrific chest pain might be due to MVD) : “I don’t believe in microvascular disease…” (just as if they’d been discussing the Tooth Fairy or Santa Claus….) Yoiks…

      Take care and stay safe! ♥

      Like

  3. Mine was malpractice w/no recourse, no compensation. There definitely needs to be mandatory reporting. Even a heart blog refused my “tough course” as the surgeons call it it, because the blogger said he only wanted positive outcome bloggers!

    Liked by 1 person

    1. Hello Roslyn – sorry you had to go through a malpractice experience. Your comments about that blogger who only wanted to see “positive outcomes” reminds me of what friends in the breast cancer community are telling me about their frustration with their “pink ribbon” festivities that purport to be about celebrating the “heroes” who have “won” their battle with cancer – while completely ignoring women with metastatic stage 4 breast cancer.

      They want only the cheerful perky patients onstage cheering on fundraising participants surrounded by a world of PINK – but those severely ill stage 4 patients would be too depressing for participants, sponsors and potential donors to have to look at – thus ignoring a subset of patients who are likely the most in need and the most overlooked.

      Thanks for your comment today. Take care and stay safe… ♥

      Like

  4. I can’t help but comment here after reading this because it’s hitting way too close to home today. The concerns I have as a veteran heart patient — and as a mom — are about how the pandemic is causing poorer healthcare for patients of all types because these patients have to go to appointments or the ER all alone with no one to speak on their behalf or support them emotionally.

    My 22-year-old daughter began complaining to me probably 2 weeks ago now about a pain in her butt. She could not figure out what it could be — no injury or anything like that. Over the next days the pain began to spread down her leg and her leg occasionally became numb. On Friday 10/23 she went to our local ER, where no one is allowed in with the patient due to COVID, even though in our relatively small town there is little incidence of it.

    She is not experienced in dealing with medical personnel and was unable to successfully advocate for herself. She told me the male nurse was “cranky” and then a male doctor came in to talk with her. I’m sure she felt intimidated by these two men and probably didn’t describe the pain as well as she could. The doctor was with her only for a few minutes and never even asked to see her leg (she was wearing pants) but just kind of poked at her a bit and then said it was a muscle cramp and sciatica, prescribed Valium and a painkiller, and discharged her.

    As the “cranky” nurse administered the painkiller injection, my daughter remembers saying to him, “Wow, I was beginning to think this was a blood clot.” I was beginning to think this too — but I wasn’t there — and her comment went by unheeded. I am not sure if she mentioned this to the doctor but probably didn’t think to do that.

    She came home and the leg began to swell; apparently it wasn’t swollen in the ER. The pain became so bad that her boyfriend took her to the ER in a different hospital in another nearby town where she was diagnosed with multiple blood clots in her leg and lungs.

    I was allowed into the ER with her (after her boyfriend left to go to work — they only allowed one person in with the patient but at least they did that much) and I think this made a world of difference. When I told the nurses what happened at the other hospital, they were shocked. “You always test for the worse case scenario,” they said.

    My daughter was admitted and spent 4 lonely days in the hospital because no visitors were allowed. Now on a blood thinner, she can barely walk with her swollen leg and is using a walker someone loaned her to get around. She sees a hematologist tomorrow and I have been helping her make a list of questions to ask and coaching her on how to be firm: pull out your list at the very start and tell the doctor you have a lot of questions, and if he doesn’t answer you to your satisfaction, find another doctor.

    We are not sure why she had a blood clot, but Factor 5 Leyden, a blood clotting disorder, runs in my husband’s family. She has not been tested for it but probably will be now. Her dad and I are both heart patients and I’ve learned more than I ever wanted to know about all kinds of medical issues. You better believe that if her experienced and pushy mom had been able to be there with her the first time and advocate for her, she would have been tested for blood clots right then no matter how “cranky” the nurse was.

    COVID is negatively affecting the healthcare of EVERY patient just by the well-meaning but potentially harmful restrictions on who can accompany a patient into the ER or dr’s office or hospital room.

    Liked by 1 person

    1. Meghan, you bring up such an important point that’s especially common these days – restricted access to hospital patients. I hope your daughter continues to heal uneventfully, and undergoes all the tests she should be getting – and I’m glad you’re coaching her through the questions she will be asking. This has been an awful but very important lesson for her (and for all young people). She’s learning a lesson at 22 that many many women three times her age have not yet learned, and one that will serve her well for the rest of her life.

      It can be tough to be assertive (especially when you feel sick) but it is possible to ask the questions that need to be asked assertively, not rudely. Dr. Jerome Groopman’s terrific book “How Doctors Think” recommends that all hospital patients memorize three standard questions before being evaluated:
      1. What else could this be?
      2. Is there anything that doesn’t fit this diagnosis?
      3. Is it possible I have more than one problem?
      (useful to combat the common cognitive trap called ‘search satisfaction’ – in which the doctor’s first guess is the one and only being considered)

      I can certainly understand the reason for restricting visitors to Emergency departments, hospitals, long term care homes (especially in LTC where severe outbreaks have killed so many vulnerable residents – who then had to die alone with family caregivers kept outside the building – so tragic!)

      But you’d think that family companions in the ER could be properly outfitted with gowns/caps/masks/booties with all appropriate donning & doffing instructions before approaching the patient’s bedside – the way we used to manage strict isolation protocols in our hospitals long before COVID.

      COVID has also seriously but indirectly affected heart patients who, since early March, have been afraid to call 911 or even go into Emergency on their own, even with life-threatening cardiac symptoms (a combination, apparently, of fear of infection plus not wanting to overburden already exhausted healthcare teams).

      Take care, and stay safe – both of you! ♥

      Like

  5. Though I have had a stent placed, the bulk of my experience with cardiac issues are based on my diagnosis of Hypertrophic Cardiomyopathy.

    I was misdiagnosed multiple times from the age of 27. My symptoms worsened With time and I was finally accurately diagnosed and treated at the age of 57. Though my HCM did not have an emergency aspect at the time I was diagnosed, I was at high risk of Sudden Cardiac Death without proper diagnosis.

    I tell this story because, being mis-diagnosed or undiagnosed for all those years changed my life.

    Not just physically but mentally. I, an ICU nurse, could not trust doctors to know what I thought they were supposed to know. This was re-enforced when a heart surgeon did inadequate surgery on my heart and I had to have the surgery redone.

    I became hyper vigilant, studying as if for Med School exams. I questioned every doctor and was sure I probably knew better.
    Four years after my heart surgery and 3 years after my stent and ablation for arrhythmias… I have finally settled down.

    Only because I now have a 9 year relationship with a cardiologist that values my perceptions of “something Is not right” With my body.

    One of the greatest female gifts, if not suppressed, is our sensitivity and ESP. This is blatantly discounted by the medical profession because it is not quantifiable by a lab test. I have experienced it in both male and female doctors.

    The human side of health and disease needs to be addressed in medical schools AND women need to trust their intuition more.

    Decades ago… A friend of mine used to work with the head of the American Holistic Medical society and gave lectures to doctors about Energy, Intuition and Awareness. That became “out of vogue” I guess… but you, Carolyn should be giving presentations to medical students as well as heart patients.

    Your research and experience is invaluable.

    Liked by 1 person

    1. Thanks Jill for sharing your unique perspective here. I used to assume that if somebody was a nurse or a doctor, they’d get extra special treatment from their colleagues when they became a patient. But I’ve heard so many awful stories about hospital staff being rude or dismissive when the patient is a healthcare professional that I’m beginning to wonder. One of the worst was from Dr. Itzhak Brook‘s book “My Voice” – about his own experience as a physician diagnosed with throat cancer, e.g. when he asked the senior resident to clean his obstructed tracheotomy tube, which had just been wiped down inappropriately using tap water, and was told: “‘We call the shots here!”

      Maybe some staff see the medical professional/patient as somebody knowledgeable enough to be more critical of their skills than the average patient?

      So glad you have a positive relationship with your current cardiologist!

      Take care, stay safe… ♥

      Like

  6. Makes me wonder if a daughter-in-law of a sweet lady I once knew was a part of that 3rd group. A 47 year old woman suffered a massive heart attack, she was fit and active. This happened early this October and because of COVID, it took 2-1/2 frantic hours of calling from their small, filled to capacity hospital to find an ICU room. She subsequently suffered two strokes, one in the spine and one in the part of the brain that controls vision.

    She has passed just this past week leaving devastated family and friends.

    Liked by 1 person

    1. Oh, Lynda. What a tragic story… It’s devastating to even imagine how horrible it must have been for her, her whole family – and also the staff at the small hospital, desperately trying to find an ICU bed for your friend’s daughter-in-law.

      And so young! No 47-year old “fit and active” woman would guess she’d be in any danger of a massive heart attack… Yet we know that heart disease in younger women is on the rise, and in the American Heart Association National Survey that I mentioned here, younger women also were the most likely to be unaware that heart disease is their #1 killer.

      Thanks for sharing this news – perhaps another young woman will read your words and be reminded that YES it can happen to her, too.

      Take care, and stay safe… ♥

      Like

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