by Carolyn Thomas ♥ @HeartSisters
Cardiologists know that, when it comes to seeking emergency medical help while experiencing alarming cardiac symptoms, women can be surprisingly reluctant to call 911. As I’ve written about here, here and here, this is a puzzling phenomenon we call treatment-seeking delay behaviour. It turns out that some cardiologists have to worry not only about patients like this, but about their own mothers.
Two such cardiologists are at St. Vincent’s Heart Center in Indianapolis and
” Our mothers have a few things in common. They are intelligent, self-aware, and careful. And both of them have daughters who are cardiologists.
“Unfortunately, they also share the dubious honor of having delayed calling for emergency care after developing cardiovascular symptoms.
“One mom, a healthy 80-year-old retired insurance agent, noticed some numbness in her face and tongue and weakness in her left hand; when these symptoms did not go away, she became concerned that she might be having a stroke and called the nurse help line provided by her health plan. Not surprisingly, the nurse instructed her to hang up and dial 911 – but instead, she called a family member and asked for a ride to the hospital. Thankfully, her symptoms resolved, tests were negative, and she has felt well since then.
“The other mom, a 74-year-old retired physical therapist, experienced severe indigestion after dinner one evening. She was able to fall asleep as it came and went, but was awakened in the middle of the night by discomfort radiating to her jaw and arms – so she woke her husband, and after some discussion, they drove to the local emergency room, where she was found to be having an inferior ST-segment–elevation myocardial infarction (a heart attack).
“Though both were aware of the symptoms of stroke and heart attack, neither woman thought it would happen to her.
“Neither did the family members who transported them to the hospital. And, as both concerned daughters and data-driven clinicians and researchers, we got to thinking: how could we make this better?“
Drs. Walsh and Joynt suggested these important steps in seeking faster care for cardiovascular symptoms:
- Women need to be aware of the signs and symptoms of cardiovascular disease.
- Women must connect the symptoms we’re experiencing to the possibility of a stroke or heart attack—the recognition that this could be one of those two serious conditions.
- Women need to seek immediate medical care.
Some of the other questions they pondered included :
“Are women less knowledgeable about signs and symptoms of cardiovascular disease? Less likely to recognize cardiovascular symptoms in themselves? Are they slower to seek care? And are these women’s problems or everyone’s problems?”
The answers are not encouraging. For example, they cite a 2012 survey of American women that found a surprisingly low 56% reported that they would associate having chest pain with a heart attack, and only 17% would associate chest tightness symptoms with a heart attack. Similarly, fewer than 18% of women surveyed were aware of what used to be called atypical heart attack symptoms such as nausea or fatigue.(2) Similar gaps have also been demonstrated in a Canadian study.(3)
And knowledge of stroke warning symptoms seems to be limited in both women and men, with 50-75% of adults unaware of important warning symptoms for this condition. (4,5) By the way, in case you’re one of them, remember this F.A.S.T. guide to the most common stroke signs:
Women are more likely than men to present without chest pain during a heart attack.(6) This is particularly important because the absence of chest pain as a presenting symptom has been associated with increased mortality, especially among younger women.(7)
But although women may find themselves in this atypical cardiac symptom category, both sexes need to know that atypical symptoms are in fact perfectly typical for women, as Drs. Walsh and Joynt reminded us.
But the big difference: women are less likely than men to realistically see cardiovascular disease as a risk to their own health.
When it comes to treatment-seeking delay behaviour, we know that older age, female sex, low education level, low socioeconomic status, black race, and diabetes are all factors that have been associated with taking longer to seek emergency treatment during a heart attack. But combinations of more than one of these risk factors (for example, being an older black woman living with diabetes) are even more powerful predictors of delay.(8) And shockingly, researchers have found that even having an increased knowledge of stroke symptoms was NOT associated with the intent to call 911 for these symptoms.(4)
Although the rate of women’s awareness of cardiovascular disease as our leading cause of death increased from 1997 to 20 years later(9), I was astonished to learn that in the latest American Heart Association’s national survey, awareness was worse than it was 10 years earlier. See also: Women’s heart disease: an awareness campaign fail?
That still means, however, that almost half of us are just not getting the message. Many women, sadly, still see heart disease as a man’s problem. I was one of them! See more here.
The Circulation article contains some interesting insights into both women’s knowledge of cardiac symptoms and their likelihood to apply that knowledge to themselves if and when symptoms occur.
For example, the article cites WomenHeart: The National Coalition for Women with Heart Disease, and the organization’s most-read page on their website. It’s called: “Am I Having a Heart Attack?” In a one-month period ending mid-January 2016, for example, this page was viewed 14,072 times, representing one-third of total website views for the entire site, and easily making it the most widely viewed page on the site.
I’ve observed the same results here on my Heart Sisters blog. One of my most popular articles (often with over twice the readership of whatever is in second place) has been the one called “How Does It Really Feel To Have a Heart Attack? Women Survivors Answer That Question“, which so far has been viewed over half a million times since I wrote it in 2009.
As Drs. Walsh and Joynt say:
“We can only hope that this use reflects women seeking information at times when they are not actually having symptoms, but suspect this is not always the case.”
Women clearly want to know the answer to that “Am I having a heart attack?” question, but my own hunch is far less optimistic than theirs: I suspect instead that the vast majority of readers are experiencing frightening symptoms when they visit either of our websites to get that specific answer to that question. It’s what I call the 2 a.m. all-alone-and-scared Dr. Google search. . .
For me, the most striking part of the Circulation essay was this call to action by these two daughters whose mothers had experienced cardiovascular symptoms:
” How else might we encourage both women and men to seek care quickly when symptoms strike? One possibility is that our messaging needs to focus not only on knowledge but also on support, letting patients know that false alarms are okay, and we are not going to laugh if they come to the ER worried about a heart attack or stroke.
“Continuing to normalize that heart disease may also be important: culture and identity play a role in our perceptions of disease risk as does familiarity with the disease in others. Socioeconomic gaps in knowledge and delay are also significant, and campaigns focused on underserved populations might have particular promise in improving outcomes.
“Finally, we need to enlist men to help women, women to help men, caregivers to help care recipients, and most salient to us, children to help parents, to both recognize and act on potentially life-threatening symptoms when they occur.”
1. Circulation Cardiovasc Quality Outcomes. (2 Suppl 1):S97-9. .
2. Lori Mosca et al., Fifteen-Year Trends in Awareness of Heart Disease in Women: Results of a 2012 American Heart Association National Survey. Circulation. 2013;127:1254–1263.
3. L.A. McDonnell et al., Perceived vs. actual knowledge and risk of heart disease in women: findings from a Canadian survey on heart health awareness, attitudes, and lifestyle. Canadian Journal of Cardiology, 2014;30:827–834.
4. C. Fussman C et al., Lack of association between stroke symptom knowledge and intent to call 911: a population-based survey. Stroke. 2010;41:1501–1507.
5. H. Mochari-Greenberger, National women’s knowledge of stroke warning signs, overall and by race/ethnic group. Stroke. 2014;45:1180–1182.
6. John Canto et al., Association of age and sex with myocardial infarction symptom presentation and in-hospital mortality. Journal of the American Medical Association (JAMA). 2012;307:813–822.
7. N.A. Khan, Sex differences in acute coronary syndrome symptom presentation in young patients. JAMA Internal Medicine. 2013;173:1863–1871.
8. H. Ting et al., Factors associated with longer time from symptom onset to hospital presentation for patients with ST-elevation myocardial infarction. Archives of Internal Medicine. 2008;168:959–968.
9. E.C. Leifheit-Limson et al., Sex differences in cardiac risk factors, perceived risk, and health care provider discussion of risk and risk modification among young patients with acute myocardial infarction: The VIRGO Study. Journal of the American College of Cardiology, 2015;66:1949–1957.
NOTE FROM CAROLYN: Read Chapter 1 of my book, “A Woman’s Guide to Living with Heart Disease“ (Johns Hopkins University Press). 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 my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price).
♥
Q: Has your own mother delayed seeking treatment despite distressing symptoms?
See also:
The symptomatic tipping in women’s heart attacks
What is causing my chest pain?
The freakish nature of cardiac pain
How women can tell if they’re heading for a heart attack
Be your own hero during a heart attack
Finally! An official scientific statement on heart attacks in women
6 reasons women delay seeking help – yes, even in mid-heart attack
Heart Sisters 
Catching up with all the ten thousand e-mails and glad that I didn’t press delete on this one as it made me stop and think . .. again . . . why I’m reluctant to go to the ER.
First of all, when I don’t feel well I like to be left alone (as opposed to my husband who prefers hovering). Secondly, having grown up with good health I fall into the “it will never happen to me” category as denial has always been my friendly co-companion. Third, anytime I feel a twinge . . . or worse . . . I simply blame it on fibromyalgia which has become an all too familiar scapegoat.
Thanks for my “think”.
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I hear ya, Judy-Judith! I’m with you on two of those three reasons. I too prefer to hunker down under the covers when feeling ill, just waiting it out until I’m fine again. Until my heart attack, I’d only been in an Emergency Department once in my entire life (bicycle accident – broken foot!) which links to the second reason, denial, where no matter how sick we get, we are busy trying to convince ourselves that ‘This too shall pass’, or ‘Maybe if it’s still hurting tomorrow, I’ll get it checked out.’ Thanks for your comment…
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In my experience, an additional huge problem is when we do make it to the emergency room, all too often we are dismissed by the ER staff if the tests are inconclusive. We are told we are too anxious, that does not give us confidence and highly discourages us from coming back to the ER again. At the very least, heart enzyme levels should be taken at timed intervals just in case.
And some encouraging words from the ER staff would help. Once I had to wait 8 hours in the waiting room with heart symptoms, along with other heart patients. That is unacceptable.
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Oh, you are so right, Joanne! Eight hours to wait in the ER when you present with heart symptoms is unacceptable (and could be fatal!) as it was in the tragic case of Beatrice Vance. I have often said that few things in life are more anxiety-producing than fearing you’re in the middle of a frickety-fracking heart attack!!! No wonder we appear “anxious” to ER staff!
Dr. Jonathan Tomlinson in the U.K. once wrote a fantastic article about the reassuring effect of docs saying to patients: “You did the right thing by coming here today…” Wouldn’t those encouraging words make you feel relieved (compared to feeling stupid because you just wasted everybody’s time?) Thanks so much for your comments here.
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When I went back to the ER, with complaint of increasing shortness of breath, one week after not getting better on antibiotics, the triage nurse had me sit in a waiting area for over 30 minutes. When she finally called me to her desk, I was again breathing heavily. She said, “You weren’t breathing like this while you were waiting, why are you doing it now?” I told her I wasn’t active while sitting…just moving from the waiting area to her desk was causing the SOB to increase. She was rather shocked when I was admitted with diagnosis of CHF… wish I could say she learned a lesson, but I doubt she did.
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I have two thoughts in response to this article. First, I have heard a lot about how women (and men too) are reluctant to call 911. The cardiologist who inserted my two stents (fortunately before I ever had a heart attack, both times) likes to exhort people to call 911 if you are having any symptoms of a heart attack, and he says “Time is muscle,” which is true. But even as I understand his point and embrace what he is saying, I have to say I would be reluctant to call 911 partly because it’s such a big fuss over something which might pan out to be nothing.
But the bigger reason why I would be reluctant to call and is perhaps why others are the same way seems like an obvious thing to me that is never considered in articles like this — ambulance care is expensive! Years ago my daughter was taken to the hospital in an ambulance from our family doctor’s office because she was having such a bad asthma attack that he felt he was being irresponsible if he didn’t send her in an ambulance. I had driven her to the dr’s office and the hospital was maybe 2-3 miles away, but he insisted. Which was fine that she was given oxygen and care on that short trip — but I recall that the 2-mile trip up the hill to the ER cost over $600 that we had to pay out of pocket at the time. We have a lot of medical bills and frankly the idea of adding hundreds of dollars onto the burden of our costs makes me think twice about calling 911, even though I do understand how important it is.
My second response to this article is that the reality of a mother (or mother-in-law, in my case) not wanting to call for emergency help is a huge concern for us right now so this really resonated with me. Many of the factors you listed about women who delay seeking help pertain to my MIL: now 76 and a widow living alone, she is basically uneducated and grew up in a very poor family. She just came last week for a week-long visit (the first time we’ve ever done this, and probably the last) and we couldn’t wait for her to leave. She is impossible to be around for very long and we were all totally stressed out by the time she left. We live in upstate NY and she lives in Florida for most of the year but still comes north each summer to stay in the house not far from here where my husband grew up. She is stubborn, strong willed, impatient, insensitive, prone to anger, rude, and crass. She has a lot of health issues, including heart problems, low blood sugar, and poor mobility and balance. She won’t listen to common sense at all, thinks she knows better than everyone else, and totally doesn’t realize or care about how her selfish stubborn choices affect the rest of us who will have to care for her if she is hurt or sick. We are very concerned that she will try to do too much at some point (like climb on a ladder to do household chores) and will be injured — my greatest fear is that she will break her hip and need 24-hour care. We can’t have her living with us, not enough room, and it would never work out (she agrees with that too — I know I bug her as much as she bugs me). It’s a bad situation all around.
I don’t think she would ever call 911 if she was hurt or having symptoms of anything serious. She refuses to wear a monitoring device or do anything like that to ensure her own safety. She even has problems using a cell phone and just bought yet another smart phone thinking that this time it will work right and she will understand how to use it. My poor long-suffering tech support husband is doing the best he can to help her but even his great patience wears thin after awhile.
Sorry to vent about this but it’s on my mind right now and this article was so timely. Just sharing that another reason some older women wouldn’t call 911 is that they are just plain stubborn and foolish and think they can handle anything!
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Hello Meghan and thanks for adding those two very valid observations to the mix. It’s a pretty insane situation when people can’t afford to call an ambulance (that might mean the difference between life and death). A woman in one of my women’s heart health presentation audiences told me that she had taken the bus to the ER during her heart attack!
Your second point really hit home for me, too (perhaps your mother-in-law and my late mother were sisters separated at birth?!) In my Mum’s case, her vascular dementia meant she had no more filters on anything she said, and no insight into cause and effect anymore. She’d never call 911 either…
If your M.I.L. hasn’t already had a geriatric assessment, that might be a good next step for her so she’ll have a caseworker in place (for when she has her big fall or whatever will realistically come to pass). Best of luck to you…
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Thanks, Carolyn! Sorry that you had a hard time with your mum. My mil has always been this way but it is definitely getting worse with time. Your comment about “no more filters” is really helpful, that really describes how she is. We talked to a counselor about her and when I told her Mom had literally screamed at the receptionist at our mechanics’ shop because her car wasn’t done, she suggested that there could be some dementia setting in, which I hadn’t considered. She thinks everyone is out to get her and she herself admits she can’t remember things anymore (like that she shouldn’t call my 19yo daughter by the nickname she had when she was 2 and now hates). She has been having a hard time since Dad died 4 years ago from ALS — she took care of him for the last years of his life as he deteriorated from the disease and hung on for a couple of years beyond what they said he would. It really took its toll on her emotions and physical health. She still talks to him. . .
The counselor we consulted gave us good information on things like medical power of attorney and other paper work we are hoping to have her sign when she comes back up this summer. She also told us that should Mom ever need a nursing home, given her difficult personality, none in this area would even take her — cause for even more concern! We could be stuck with her on our couch! 8^(
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Hi again Meghan – wow, that’s pretty awful to think that no nursing home in your are would even take your M.I.L. (Only sweet-natured, quiet little old ladies need apply!?) I suspect that there may be some additional information out there on this question for you (even my own mother, definitely a difficult personality, was accepted at two different care homes.) That paranoia and memory loss you describe are common first signs (as is an atypical disregard for personal hygiene!)
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Thanks for an insightful and helpful article. I shared with all the women in my life on my email address list.
– Ree
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Thanks, Ree!
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I am a retired ER RN, and I was diagnosed with heart failure in early 2014. Two stents were placed in the RCA, and I have been on several meds since… most were lowered to minimum dosages six months after. I am one of those who is knowledgeable, experienced, and well aware of symptoms and I did delay going to the ER back then. I thought I had a bad cold, increasing cough, SOB (shortness of breath), spasms in the middle of my chest, fluid build up, and I still refused to go. I didn’t agree until it got so bad I was gasping for breath and holding onto a counter to keep from falling.
I was diagnosed with pneumonia and pleural effusion, and sent home on antibiotics. A week later I was even worse… family finally convinced me to go back as once again the SOB was so bad. This time I was admitted, and got the diagnose of heart failure. A week later, had the cath, and stents were placed. Prior to all of this I was healthy, still active, not on any meds, and I was totally shocked.
A year after this, I broke the fibula just above my right ankle. A year later, I fell again and this time had a left displaced tibial plateau fracture, as well as a spiral fracture of the same tibia. Both of the falls were caused by my big dogs. It is now a year after the last fractures, and I am still unable to walk much without using a walker, and even then both ankles cause me severe pain when doing so.
Last October, I had a couple of days where I experienced the mid chest spasms, and what I though could be atrial flutter. The incidents were brief and I hadn’t had them again, although I had started having right foot numbness at night. Saw my cardiologist for a routine 6 months checkup, and he decided to schedule a nuclear stress test after he heard me describing the incidents, as well as the numbness in my foot. I also continued to have night cramps in both feet and legs, which I have had since I was a young teen. He also scheduled a Bilateral Lower leg Doppler. I received a call a few days after the stress test, and was told it was normal, but he wanted me to start Imdur, 30 mg a day. A week after the leg Doppler, I hadn’t heard anything, so I called. First I was told they couldn’t find the results; they were supposed to go to another doctor in their group who ‘handles’ those. Then I got a call back the next day, and was told the results were normal. No blockage, even though the technician had told me he did find one in the right femoral artery at the knee level.
Two weeks, yes two weeks later I got another call that the results reported were in error due to a software glitch, and I did indeed have a blockage, and they wanted me to see this other doc the next morning. So I went, and he listened a bit to both legs, and then sat down and asked me what I wanted to do. I told him I wanted to walk again, and was expecting to get a second opinion from a different Ortho doc, but needed to make sure now that blood flow was adequate as I now believed it was contributing to the pain and weakness in both legs. So he scheduled an aortagram, and initially was going to “fix” the left leg first. I questioned then when I saw it on the appointment sheet, and had to call back and talk with him. He said, they both need to be fixed but I will do whichever one you want first. Well, I did say the Right leg and foot was the one causing me the most problems, and he again said, “Look, I will do whatever you want”… By this time, I was frustrated, so I said why don’t you just look at both and then fix the worst one first. Got a call back the next day that they would do the right one first.
Test was scheduled the following week at 11:30 am, and doc was late, it didn’t start until 3pm, and I was able to watch the monitor, and did see a blockage, with collateral flow in the knee area of the right leg. Then he told me my abdominal aorta was totally blocked, at the navel, on the left side, and that I didn’t have any flow at all to the left femoral artery. He said he would admit me and fix the blockages in two separate procedures. I admit I was dumbfounded as I didn’t have as many issues with the left leg except those related to the plates and screws, and knee articulation from the fractures.
After pressure was placed on the right femoral area, I was released at 5pm to go home. I received a call from his office the next day telling me that I was scheduled for a “right balloon and possible stent placement” at a local hospital, that he uses. Due to a request for an amount of money that I didn’t have, the hospital refused to register me… apparently I had an outstanding bill from a previous ER visit. I called and left a message at 130 pm, and didn’t hear back from the office, nor the doc. I called the office the next day, and was told they never saw the message, and the doc had called her and wanted my number since I didn’t show up for the scheduled procedure. I still had his cell number so I called him and explained what happened. His response was for me to “go to the ER with complaint of leg pain, get admitted,” and then he would do the procedure. That was this past Thursday. Needless to say, I chose not to do as he suggested. My family is upset, I am upset, and contemplating getting a consult with a Vascular Surgery group that uses the largest hospital here, where I had the fracture repair.
Sorry for the long post, but I wanted you all to see things from the perspective of a woman old enough to be your mother, or grandmother…I am 67, and I know full well why I always said you have to pay me to go the ER, and I did love working in them my entire nursing career… but I know also how we are treated by some nurses, and doctors, and my knowledge and experience doesn’t impress them at all.
My advice to others has always been, go to the ER anyway, and don’t give up. Taking that advice myself is a different story…
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Wanted to add, after being released so early after the aortagram, I developed a large hematoma, bruising across my entire abdomen, my groin, and down both legs…this has only now gone away. I should have been kept lying down for several hours after the femoral stick, but “that vascular clinic closes at 5pm”, and everyone was ready to leave. I do have little confidence in most doctors. Having worked mostly in teaching hospitals, I have seen and worked with many doctors…very few have impressed me, sadly, but it is true that healthcare has changed, training has changed, and attitudes have really changed over the last 20-30 years.
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One of the weak links to the risk of diagnosis delay is that weakness, exhaustion, nausea, shoulder pain, chest pain is that they are shared by a multiple of other diagnoses, one of which is heart attack.
Body parts start talking to you on a daily basis. Your shoulder may hurt because of a rotator cuff injury or arthritis. Stressed by everyday life is exhausting. Undetected UTI’s are not painful – the only symptom is increased urination, higher pulse, and cloudy thinking.
Common to all misdiagnosed heart attacks is the failure to investigate in a timely manner.
Medical treatment requires medical testing which requires assistance from the medical community. If they don’t know that you are requesting help (like you fail to seek out a medical opinion), then you have made your own misdiagnosis.
When paramedics and physicians use their “judgement” to determine you have whatever convenient GOMER (Get Out Of My ER) diagnosis, then they have ignored the risks associated with failed diagnosis – wrongful death/injury. Unfortunately for the patient, attorneys also know that they will not be sued for wrongful injury because it’s impossible to determine how much of the injury was due to the heart attack vs the delayed treatment…unless you die. Then it’s pretty obvious.
What happens when you have a pacemaker, a previous heart cath (from 6 years ago) that shows you have no blockages and you are approaching 90 and still do daily workouts at the gym with a trainer? Healthy, right? The chest pain resulted in an ambulance trip to the ED and discharged with no diagnosis other than to check in with your physician. The EKG test results are skewed by the pacemaker and are nearly useless for diagnosis. The pacemaker also rules out a cardiac MRI testing. The blood tests show low sodium – and that could easily explain the weakness, so the focus shifts to stabilizing sodium. The routine pacemaker visits show PVC swarms, so mg is offered up and seems to be helping to reduce the PVCs. The chest pains re-occur during the cardio segments of the daily training and performance declines over the following months. Now it’s chest and back pains. The elder goes white as death when the pains occur – as reported monthly during the pacemaker visits. Then the elder has difficulty making it to the elevator without chest pains. By now, 6 months have passed since the initial ambulance trip. The nuclear stress test a month later showed interrupted blood flow and a emergent heart cath. The elder was 99% blocked at the first major junction below the aorta. Three stents did the trick – bright eyes returned, warm legs/feet/hands, the pumping efficiency of the heart (ejection fraction) climbed from 30% to 45% and is still improving.
The sodium levels are normal again. Apparently, when your heart is failing, it’s common to see sudden onset low sodium. The elder has graduated from cardiac rehab, and PT – and is back training at the gym – and has now walked further than she has in the last 18 months. Back loving life with no pain and no fear.
The takeaways from this story:
1. The squeaky wheel will never be ignored, so if you are feeling crappy….YELL IT OUT and do not stop until you feel good again.
2. An athlete will always have more capacity than is needed for sedentary lifestyle (which is what happens when you feel crappy) regardless of age. You have to explain your personal performance degradation so the industry doesn’t brand you with “old person syndrome”, “fat person syndrome”, or any other of the quick judgement calls. For instance, I may be 90, but I walk downtown and home daily and suddenly I cannot do that anymore. I get chest pains walking to my elevators. I am cold all the time. Supporting data will only help (like BP/pulse/training records)
3. Focused attention is needed to not ignore those whispers – it’s your body talking to you.
4. Keep current on your annual checkups and immunizations – it shows responsibility, if nothing more.
5. Your doctors cannot help you if you don’t make the effort to help yourself.
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So many good points, Anne, starting with your very first paragraph. So much of medicine is just trying to figure out what the problem is NOT (and with chest pain, the vast majority of hospital admissions for chest pain – as high as 85% – do indeed turn out NOT to be heart-related. No wonder docs send so many of us home from the ER, really.
That “focused attention” you mention is also important, especially as we age, in telling the difference between what Sandra Sizer (her comment, below) calls “ordinary” daily symptoms and new/different symptoms that do warrant attention. One of my readers complained to her GP about crushing fatigue and was offered antidepressants. Her reply: “Well, if you think they will actually help me carry a heavy laundry hamper up my basement stairs…” You have to be specific!
Also liked your observation that “if you fail to seek out a medical opinion, then you have made your own misdiagnosis.” That’s what I did! I was misdiagnosed TWICE during my heart attack: once by an ER doc who sent me home, but then again by ME for refusing to go back to the ER when my symptoms got worse!
BTW, since 2011, some hospitals have successfully been doing MRIs on certain pacemaker patients – more info here from Mayo Clinic.
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As I read your article and all the others I love to receive from you, I kept having a recurrent thought that so many women go to the hospitals (good ones) and are patronized or just plain misdiagnosed. I find it hard to trust anyone these days for an honest diagnosis of a heart attack, especially if that someone happens to be male. If I have any of the symptoms you have described, I would call 911. However, I would wonder if I would receive the proper care. Sad, huh?
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Well, Fran, it’s a crapshoot. That’s the truth. I’d bet my next squirt of nitro spray that very few if any men wonder what you’re wondering while they are calling 911. But we are seeing more and more published papers about this known gender gap in diagnosing/treating female heart patients, so that is good news, isn’t it?
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I’ll keep a good thought. I know when the chips are down you have to trust. I’d like to think I live in an area where things will go well. Thanks for your columns and I’ve learned so much from all the subject matters.
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Denial is more than just a river in Egypt, as the saying goes. BUT … for those of us with coronary microvascular disease (MVD), the problem is differentiating between the “ordinary” [I use the word very loosely :-)] spasms and chest tightness and so on through the list of myriad symptoms of MVD and a real MI. Also, is it true that an EKG taken much later will indicate that there has been even a [so-called] silent heart attack?
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That’s such a good point, Sandra. I often think that most people, if they were to experience my daily MVD symptoms even once, would be on the phone calling 911 for symptoms that I am calmly monitoring as now being “ordinary”. This happens because when we repeatedly experience frequent symptoms (that turn out NOT to be signs of a fatal heart attack after all!) we eventually get pretty good at just carefully assessing them. So they do in fact feel “ordinary” to us. I’m way better at this now than in the early days/weeks/months when I lived in a pretty well constant state of useless hypervigilance… And yes, you’re right: a “silent” heart attack is sometimes identified long after the fact, with few if any symptoms, or only mild symptoms that we pass off as having the flu. Here’s some good info on silent heart attacks
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Thanks, Carolyn.
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My mother is 93, and while she has dementia, she has never had a symptom of a heart attack or been evaluated by a cardiologist, nor has any woman in my family as long as anyone can remember (and the men didn’t die of heart attacks, either). My dad had high blood pressure, which he mostly ignored.
With such a family history, it was unlikely for me to think of the chest pains I was having as a heart attack (I’m 67).
In my family, that’s just not done!
The fear of being seen as a female making a fuss about nothing – I’ve been chronically ill for 27 years, and the medical profession has been literally no help all that time (CFS) – was far stronger than any fear of it being serious.
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It makes sense that your mum wouldn’t have been seen by a cardiologist if she’d never had any cardiac problems. As cardiologist Dr. John Mandrola wrote recently: “One of my often-used closing lines with patients is: ‘You are very healthy, try to stay away from doctors — unless you are sick.'” That’s good basic advice. And family history of heart disease is just one of many cardiac risk factors, so not having such a history is no guarantee at all, as you know now, that heart disease will never happen. We do know that, as Drs. Walsh and Joynt point out in this post, even when women are well-informed about signs/symptoms/risk factors, they are not necessarily more likely to seek medical help.
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I have a very sensitive radar after all these years of being ill, and the behavior of the emergency vehicle people, and the ER staff, was not helpful.
They gave me the impression of being bored by the huge numbers of people just like me who turned out not to have real emergencies.
Based on ONLY that, I would never call an ambulance again without being absolutely certain.
And this is EXACTLY what you don’t want people to do.
Start by working with the seemingly thousands of people the person claiming an emergency will have to deal with if you want to see a change.
We KNOW what we’ll face, and how humiliating it will be.
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Dear Alice,
We women need to develop the lingo for what doctors are prepared to respond to as we describe how we are feeling. There is something called ‘low output heart failure’ due to mitochondrial dysfunction. Our mitochondrial DNA processes the oxygen in our cells and we get this DNA from our mother’s line. Some people’s response to heart failure can be a heightened immune system response. In the UK here there is a medical test called a ‘Mitochondrial Function Test’. Dr Sarah Myhill from Wales, here in the UK, and a pathologist by the name of Dr John Maclaren have written a scientific paper on this that has been published in medical journals. If you look her up you will find the paper. For me, this understanding has made a major impact in how I approach my own self care.
My experience with doctors are —– there is always a good one that listens. We just need to learn the lingo and trust ourselves.
I am grateful for this Heart Sisters blog wisdom that Carolyn shares every week. I wish you all the best in your own self care and in being heard and cared for by others.
Kind regards,
Isabella
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Hi Isabella – I agree: lingo (and approach) matter! I like your observation: “There is always a good one that listens”. I’ve experienced both kinds of docs (those who do and those who don’t) and that’s been my experience, too. I’m going to go look up this “Mitochondrial Function Test” you mention – thanks for sharing that…
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Hi Carolyn, Just so you look up the right test — it is the ‘MITOCHONDRIAL Function Profile Test’ and there is info on it at http://www.drmyhill.co.uk. It is offered by Acumen Lab here in the UK and the research certainly enlightened me on how immune system problems (which more and more people are noticing nowadays) can be related to the heart.
Also, there is a new book by a Dr Thomas Cowan entitled Human Heart, Cosmic Heart in which he writes about his own heart and how the heart function is based on a spiral of energy in our entire system as opposed to the heart as a ‘pump’. He is a very heart-centred writer in my opinion. I heard him speak on LDN Direct online radio. I have found LDN very useful with inflammation issues. It was hearing him speak on LDN (Low Dose Naltrexone) when I also heard him speak about his book and the seminar ‘The Heart Revolution’ that just occurred last month. If you want the link I will look them up and send them to you. Thanks for all you do Carolyn —
Kind regards, Isabella
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Thanks for that correction – it seems my fingers automatically type myocardial at will…. Have changed that!
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