by Carolyn Thomas ♥ @HeartSisters
My pal Cheryl Strachan, a Registered Dietitian in Calgary and author of my favourite cookbook for heart patients (30-Minute Heart Healthy Cookbook: Delicious Recipes for Easy, Low-Sodium Meals ), contacted me on February 13th (our national ‘Wear Red Canada’ Day) to ask:
“Are you watching today’s ‘Wear Red Canada’ webinar? If you’re listening to Bobbi-Jo Green’s heart patient story, I’m picturing smoke coming out of your ears!”
Cheryl had guessed correctly. By the time Bobby-Jo finished her webinar presentation, I was livid.
Bobby-Jo’s experience of enduring almost 10 years of being misdiagnosed is difficult to listen to. Hers is a bizarre cautionary example that women’s heart disease is under-diagnosed compared to our male counterparts – and under-treated even when appropriately diagnosed.
Ironically, those 10 years also represented a decade of unprecedented Heart Month awareness-raising campaigns and events – all purported to somehow help prevent women from suffering through what Bobbi-Jo had suffered by “raising awareness of women’s heart disease”. But it had also been a decade in which the American Heart Association’s latest national survey on women’s awareness of heart disease showed women were actually LESS aware now than they were 10 years earlier.
Bobbi-Jo is a mother of two children (Riley and Charley, ages 11 and 9), a teacher who is now unable to teach, an avid runner who is no longer able to run, and a person living with debilitating cardiac symptoms. She lives in Edmonton (but she adds that she’s really from beautiful Cape Breton, as my Cape Breton cousin Anne-Lorraine would likely insist as well).
What struck me about Bobbi-Jo’s dreadful experience was this: it’s immediately obvious to all who read or listen to her story that this is NOT a woman who needs more awareness-raising. She doesn’t need to be more aware of cardiac risk factors or symptoms or how to live a heart-healthy lifestyle. This is an intelligent, educated, well-informed woman who was highly motivated to solve the medical mystery that seemed unsolvable to most physicians she saw. The sicker she became over the years, the more understandably desperate for help she felt. And she wasn’t just misdiagnosed – she was repeatedly dismissed.
Bobbi-Jo’s cardiac story starts in 2013 with worrisome flu-like symptoms of severe fatigue and chest pressure. She was diagnosed in the Emergency Department with “walking pneumonia” – despite no indication of infection. Her GP also diagnosed a respiratory issue – and anxiety. At her next visit to Emergency, she was sent home with a muscle-relaxant drug and tips on stress management. With few exceptions, this would become the pattern for her medical encounters with dozens of specialists for years to come while her condition continued to worsen.
She repeatedly underwent every standard cardiac diagnostic test over the years, and also many non-cardiac tests as well. Most doctors continued to assure her that her symptoms had little to do with her heart. She was deemed “too young, too fit, too healthy” to have heart disease.
Fortunately, she did have a number of physicians who made a difference. She told me how much she appreciated her Edmonton cardiologist Dr. Ibrahim Bader and her former pain specialist Dr. Robert Hauptmann (who had the same “no stone left unturned” mindset she had). She also acknowledges her current GP Dr. Ahmed Raheem and his assistant Unis (“who treat me like a true partner in care, and are willing to help in any way”). And she describes learning about Vancouver cardiologist Dr. Tara Sedlak, Director of the Leslie Diamond Women’s Heart Centre (via other patients in the online Heart Whisperers support group) as “truly a turning point.” Bobby-Jo decided to contact Dr. Sedlak, and that year her family drove from Edmonton to Vancouver to see her:
“Dr. Sedlak took a very detailed history. She listened to me without interruption because she knew she couldn’t rely on diagnostic tests to tell the whole story.”
She also advised Bobby-Jo that an invasive diagnostic test called an Intracoronary Acetylcholine Provocation Angiogram would soon be available to her in Edmonton. Not every hospital can offer this procedure yet, but it would ultimately become the one to help physicians finally identify Bobbi-Jo’s heart condition: non-obstructive heart disease, specifically a myocardial bridge*, coronary artery spasm* and endothelial dysfunction.* As Bobbi-Jo explained:
“I had to leave the province to get the care I needed, despite being close to two heart hospitals here in Edmonton. But it’s not feasible to travel 17 hours every couple of weeks to get comprehensive care.”
It was up to Bobbi-Jo to strategize her own self-advocacy. She explained, for example, how she managed to get a referral for her first cardiac stress test:
“It took taking my husband along to vouch for me.
“For example, I was at Emergency and just happened to have a female ER physician. I coached my husband on how to be assertive without getting himself thrown out! So he was adamant with the Emergency doc that he too believed it was my heart because I was no longer able to do the things I loved (read to my kids, take them to the park, pull them in a sled, work, exercise, etc.)
“It’s not lost on me that in order to get a stress test referral, the stars had to align.
“Husband + female Emergency physician = stress test referral.”
During all this time, her two young children were of course a priority – as she described to me after the webinar:
.
What does it do to a person who is forced to desperately seek help from one specialist after another for almost 10 years? Bobby-Jo described it to me like this:
“I lost who I am somewhere through all of this.
“For years, being told I don’t know my own body, and being made to feel like I was crazy was as traumatic as being ill. So while I am believed now (because I have angiographic evidence of heart disease), I’m still not able to be truly ‘helped’. That is the soul-crushing piece.”
Bobby-Jo now believes that “doctors don’t know what the research doesn’t show.” Cardiac diagnostics, drugs and procedures are grossly under-researched in women. She wishes that she’d started her Symptom Journal earlier – tracking symptoms that can help create a clearer picture of symptom triggers. She wants every woman to get an ECG test done to establish a baseline that can be compared to later tests, and to get second or even third opinions if what you’re hearing doesn’t seem to sound right. Seek out a physician who is trained to treat heart disease in women. And she recommends two helpful online support groups for women with non-obstructive coronary artery disease:
–Canadian Women with Medical Heart Issues
As I always tell my own audiences and readers:
“You know your body. You KNOW when something is just not right. Trust that little voice inside, and do what you’d do if these symptoms were happening to your daughter, or your sister, or your Mum.”
Q: How do Heart Month awareness-raising campaigns, or buildings/landmarks (even Niagara Falls!) that are lit up red at night, or wearing red one day a year help women like Bobbi-Jo get appropriately diagnosed?
A: They don’t! Their primary function seems to be to make us feel like we’re doing something.
Heart Month can’t offer women improved diagnostic tools to replace current cardiac tests that often come back “normal” in women because they’ve been designed and researched on (white, middle-aged) men for decades. Heart Month can’t fix what the authors of the AHA national survey report called the “persistent knowledge gaps within the medical community in understanding cardiovascular disease in women.”
And Heart Month cannot convince physicians to believe women when we tell them we’re sick.
♥
You can watch Bobby-Jo and other excellent speakers in this webinar, Ask The Experts! Together, Overcoming Barriers in Women’s Heart Health. It was hosted by the Canadian Women’s Heart Health Centre, part of the University of Ottawa Heart Institute.
♥
Definitions:
- *somatization: as Bobby-Jo describes this: “Absence of evidence becomes evidence it’s all in your head”
- *myocardial bridge: a congenital heart defect in which one or more of the coronary arteries goes THROUGH the heart muscle (the myocardium) instead of being on its surface
- *coronary artery spasm: a painful spasm in the artery that causes sudden constriction, reducing blood flow to the heart muscle
- *endothelial dysfunction: affects the ability of the cells lining the coronary arteries to help dilate blood vessels, control inflammation or prevent blood clots
- See hundreds of other definitions/translations in my patient-friendly, jargon-free glossary of weird cardiology terms
♥
NOTE FROM CAROLYN: I wrote more on diagnosis and misdiagnosis of female heart patients in my book, A Woman’s Guide to Living With Heart Disease (Johns Hopkins University Press), 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).
Q: Have you ever experienced a long wait before being accurately diagnosed?
♥
See also:
–Meeting of Minds conference speaker videos: the 2019 INOCA International medical conference on Ischemia with Non-Obstructed Coronary Arteries held in London, England (with over 50 videos available, podcasts, a quarterly newsletter you can subscribe to, and regular posts, updates and video clips)
–Maya Dusenbery’s book about the history of women’s health care – “Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick
Heart Sisters 
Hi Carolyn,
I didn’t have to wait ten years but I saw my doctor once a month because the only problem I had was waking up because I had stopped breathing. My doctor was far from dismissive but was doing a 12-lead EKG every time believing it was cardiac in nature – and they were all clear. She never once dismissed it and would increase my asthma meds when pulmonary test and xrays said my asthma was controlled.
I was very angry at her when I ended up suffering an acute STEMI widowmaker heart attack with massive irreversible progressive damage.
I wasn’t overlooked, my cardiologist pulled those back records and the EKGs showed no signs of a cardiac issue. I’ve never had a single chest pain. I finally went to the ER for what I thought was an uncontrolled asthma attack. Two years later, he did a second cardiac cath to check my heart to make sure it was healing and found the scar tissue of over a dozen heart attacks.
Not every severe condition we have is that easily recognized. My conditions have been so bizarre that they call me an anomaly. I also suffer with coronary artery spasms without pain, they collapse and are what caused my heart attack. I now have to take a statin drug for the rest of my life as it is the only drug that stops it from completely closing.
Robin
LikeLike
Hello Robin – your diagnostic experiences seem very thorough – but your results as interpreted on your many EKGs did not accurately reflect the damage happening to your heart muscle. Interesting research reported by the European Society of Cardioloogy in 2021 found that in an astonishing 93% of female patients, the EKG did not provide a definitive diagnosis; many other studies have reported that physicians are accurate in interpreting EKGs in just over half of tests. And we also know that some heart conditions don’t produce specific EKG changes.
You’re so right – not every condition is being easily recognized.
Take care . . . ♥
LikeLike
Hi Carolyn,
I have since been classified as a critical care cardiac patient (anomaly), and any time I appear in the ER, I’m put in a room under a 48-72 hour hold to ensure it’s not cardiac in nature.
Robin
LikeLiked by 1 person
Hi Robin – that classification seems like a prudent decision given your heart history. Good luck to you . . .
LikeLike
Good evening Carolyn,
My family doctor was really good about getting me to where I needed to be. Mostly it was me who put the signs on the back burner, you know, I had a family to take care of.
But what I worry about now is my Cardiologist. It’s just been a year since my open heart surgery, he was not a doctor that I had seen in the hospital. And was not the cardiologist who found the blockage. He comes in and says any questions?, any problems? checks my heart, jokes with my husband, and out the door.
Does not bring anything in with him or get on the computer to check who I am and what I went through. I really did not like the doctor who was with me the week in the hospital. He had not very good bedside manners, but I am thinking he knows me, maybe I should have stayed with him, big deal, I only have to see him every six months.
Now that my head is clear I have been keeping a book of questions for my next visit in April. We will see how it goes, I need someone that I feel comfortable with and I don’t have that warm fuzzy feeling. I have a pit in my stomach feeling.
Bobby-Jo – I am sorry you had to go through all of that.
LikeLiked by 1 person
Hi Susan – I completely get that ‘symptom back burner’ urge – during my own heart attack, my very first thought was “This better not be a heart attack – because I do NOT have time for this today!”
Re your assorted cardiologists: I agree with you when you say you need a doctor you feel comfortable with. That’s important, even more important than which doctor happened to be assigned to you while you were hospitalized. For example, you probably met your cardiac surgeon while you were hospitalized and again during your 6- or 8-week follow-up, but surgeons are not usually the ones assigned for routine follow up appointments 6-12 months later – unless there is an incision infection or some other severe problem that he or she needs to see. That’s where general cardiologists come in.
Finally, it’s a very good sign that you have questions for your cardiologist’s next visit! Don’t forget to bring that book with you. This will promote a back-and-forth discussion about your unique situation, and that’s how you’ll get a better feel for this person. Then you can decide afterwards if he’s the doc for you! I’d advise you to keep this April appointment and see if how he handles your questions makes you feel more comfortable or not. If not, you can ask your GP for a referral to a new cardiologist – but of course there’s no guarantee that you’ll click with the new doctor.
Good luck in April, Susan. Hope you get all your questions answered! ♥
LikeLike
This is just horrifying. This in a country with national health insurance! To a white woman with a supportive husband. Her tenacity is amazing. I have so much anger at the bias that underlies our health care on both sides of the border. For women of color, the dismissal is even more pervasive.
I’m grateful for Carolyn writing this blog that exposed me to information I wouldn’t otherwise learn. For connecting the dots and decreasing the isolation I feel in dealing with micro vascular angina.
Thank you
Sara
LikeLiked by 1 person
Hello Sara – I was thinking the very same thing as I learned more and more about Bobbi-Jo’s story: a person of colour, or a less articulate, or less fortunate, or less informed patient might NEVER have a hope in hell of successfully pursuing a correct diagnosis. The barriers and obstacles to appropriate care are just too massive.
Take care, stay safe. . .♥
LikeLike
Ah… A story I can relate to.
I noticed I was getting ‘breathless’ in my late 40s/early 50s. And I don’t mean breathless because I was out of shape – I wasn’t. I was very active, cycling every day to and from work (25km) – but finding it increasingly harder and harder to get up hills.
It was 3 years before I even saw a cardiologist. It was another 2 before I was diagnosed with cardio microvascular disease (CMVD). And even today, my GP still thinks part of this is in my head and wants to put me on anti-depressants.
If there is anything in life I know, it is that I am not depressed!
But it is frustrating to be diagnosed with CMVD because there is nothing that can be done about it, and yet it has had such an impact on my life. None of the traditional cardiac medicines work on this issue (or at least, they don’t for me!) They seem to aim to temporarily (and in my case, ineffectively) alleviate the symptom, but don’t treat the cause – endothelial dysfunction.
Since I began telling my women friends, there’s an alarming number who have all also been entering menopause, getting ‘breathless’ and going down a rabbit hole of tests with many not getting past the traditional stress test before being dismissed.
I didn’t fail the stress test the first time – but I didn’t complete it either. And yet that is a ‘pass’ in the system? I’ve had 2 stress tests since and not completed either of those either – but because I didn’t have irregularities of the heart beat, I ‘passed.’
In summary. Many warning signs!
LikeLiked by 1 person
Hello Sally – I’m sorry that you can relate to this subject!
Your own experience reminds me, sadly, of one of my readers who, after suffering really dreadful symptoms for years, asked her doctor if her symptoms could possibly be linked to microvascular disease? His quick reply: “I DON’T BELIEVE IN MICROVASCULAR DISEASE!”
Note that she wasn’t asking him about the tooth fairy or the Easter bunny – but a known cardiac condition that’s extensively written about and published in medical journals.
No wonder Dr. Juan Carlos Kaski (a pioneering cardiologist/expert in this disorder at the University of London) calls MVD “a trash basket diagnosis“. Not because it belongs in the trash, but because, as he says, a correct diagnosis usually happens only after all other possible diagnoses are thrown out.
We do know that non-obstructive heart disease is far more common in women and in people who have diabetes. More research is being done every day – research that, unlike most cardiac studies for the past four decades, is including female patients.
The traditional treatment protocol for Coronary Artery Disease is basically set up to identify blocked arteries and then to unblock them. Period. Non-obstructive conditions, as you and Bobbi-Jo and I have all experienced, are relatively new (in the cardiology world). New enough that some people with the letters M.D. after their names can still say out loud without a shred of embarrassment: “I don’t believe in this diagnosis!”
If you haven’t already seen these videos, please watch these short presentations from the 2019 Meeting of Minds” medical conference held in London, England. The faculty speaking are – amazingly! – all healthcare professionals with both experience and skills in treating these ‘small vessel’ disorders.
Take care, and stay safe. . . ♥
LikeLike
So very true, Carolyn. From talking with others CMVD is not ‘one’ thing. I can do exercise – some times (rarely) – with no evidence of angina/spasm at all, which makes me think I have something triggering my arterioles to spasm. But in talking with others who have also been diagnosed, it’s clear some can have blocked or partially blocked microvessels and some may have both. MCVD is very much a blanket term for a bunch of conditions and it DEFINITELY exists!
I would be furious at any doctor telling me MCVD doesn’t exist as I battle in pain to walk up a hill with my BPM stubbornly not rising above 110… Something is stopping my heart from beating to meet the required exertional demand! And it’s not getting better. Grrrr.
LikeLiked by 1 person
Sally, you might want to request a meds review appointment with your local pharmacist. Beta blockers, for example, are famous for slowing down heart rate during exertion. That’s how they work: they slow the heart. Mayo Clinic confirms:“No matter how hard you exercise when taking a beta blocker, you may never reach your target heart rate.”
In cardiac rehab, we were warned that whatever we’d been used to when exercising (i.e. heart rate rising under exertion) would NOT happen if we were on beta blockers.
In my own case, I was diagnosed with MVD a few months after my widowmaker heart attack – two diagnoses for the price of one: first a blocked coronary artery (your typical Hollywood heart attack) followed by a non-obstructive coronary artery diagnosis. I was diagnosed 15 years ago, and my ability to exercise without chest pain has improved year by year.
It’s a crazy diagnosis that doesn’t pay attention to what doctors think!
LikeLike
I watched every one of this INOCA Meeting of Minds talks! Thank you ever so much for posting that, Carolyn!
Frustrating to see even some of them contradict each other. And I literally jumped up screaming, ‘No, no, NO!!!!!” when Professor Peter Collins had a slide of some chappy back in 1772 describing Angina Pectoris, and it could have been me to a ‘T’! How can Angina have been recognised over 2 and a half centuries ago and STILL we have doctors today who dismiss it or are squabbling over how to define and treat it?
(I’m with the doctor who said Angina is a galaxy of types not one type!)
Really interesting perspective from doctors and patients alike.
LikeLiked by 1 person
Sally!!! That’s exactly what I did too when I first learned of the Meeting of Minds conference videos: I sat down and watched every single speaker, one after another. (I think I missed lunch that day!)
So much knowledge and experience in that London conference room – it was a huge relief just knowing that such experts exist. Maybe not throughout the entire medical system, but those experts were on fire! Yes, they sometimes contradicted each other but that is, in my experience, what docs like to do at medical conferences (part of the “scientific method”?) Meanwhile, I felt so encouraged watching these speakers: physicians may not listen to us patients, but they WILL listen to other physicians like these. I just wish they could listen a bit faster!
Angina Pectoris (literally translated: “strangling in the chest”) has indeed been around forever – that 1772 chappy was a MAN with angina, of course. Sadly, women still have to fight to be believed that the angina symptoms they’re experiencing are not just stress, anxiety, hormones, indigestion, etc etc etc. At Mayo Clinic, they taught us that any symptom “from neck to navel” that worsens with exertion & improves with rest is considered cardiac “until proven otherwise”.
I’m so glad you watched EVERY ONE of those videos, Sally. Tell your friends, tell your doctors.
Take care . . . ♥
LikeLike
Sally, I’m so sorry you can relate so closely to my journey. It’s funny you bring up the Stress Test. I couldn’t complete my first one and my second one – I had left sided chest pain during the test; however, the machine spit out a ‘negative study’ so that meant off to the pain clinic for me!
My meds don’t work for me either- and I’ve tried whatever I could get my hands on. This also creates a tricky situation for women in heart health crisis, as when we aren’t responding to the medication it’s used as empirical evidence we mustn’t have heart issues 🤷🏻♀️
LikeLiked by 1 person
Hi Bobbi-Jo.
You sound as frustrated as me.
I too have tried everything – beta blockers, calcium channel blockers, nitroglycerine (which gives me volcanic headaches so I guess it works on the blood vessels in my head!), and Ranolazine. The golden triangle of blockers/nitroglycerine did nothing except produce side effect but did not do anything to address the angina, and the Ranolazine had a miniscule effect on part of my angina attacks, but in the end gave me such phenomenal light sensitivity, I had to give it up or else I was not going to be exercising at all!
Time for acknowledgement and some new research. If this is one of the most common forms of heart disease in women, there are a lot of women desperate for something to enable us to return to a more normal life!
LikeLiked by 1 person
My medical record has a note to never assign me Anesthesiologist X. The guy who walked in to my room pre-op and announced, “I see you have micro vascular angina, a diagnosis no one believes in.”
Then proceeds to under-medicate me because of concerns about my heart. If nothing else I’ve learned to speak up, stand up and ask for what I need.
LikeLiked by 1 person
Hello Sara – that is true-blue jerk behaviour right there. . . Maybe he thought he was making a joke?!?
My concern about such a request on your medical record is that if any hospital admin ask that doc why this patient would have requested such a thing, he’ll just make excuses about what an impossibly unpleasant pain in the neck you were. . . *sigh*
I kept thinking the same thing about Bobbi-Jo’s story: what hope in hell does anybody who is black or first nations or NON-MALE have if an articulate, educated person like Bobbi-Jo can be dismissed as she was – for almost 10 years?!?! And patients are the SICK PEOPLE in the room! The least capable of being “empowered”!
Take care, stay safe . . . ♥
LikeLike
Oh Carolyn, Your question revived the decades I went through to finally get a diagnosis of Hypertrophic Cardiomyopathy (HCM).
Being strong and active in my younger years, I often dismissed my symptoms and the doctors supported that as well.
I distinctly remember, at 28 years old having chest pain and palpitations after almost every single meal. Since I worked in an ICU, after dinner one evening I went in an empty room and put on the EKG leads only to find out that I was having PVCs every third beat. Definitely not normal.
So I got myself an appointment with a cardiologist. He did NO cardiac tests, listened to my heart and told me I had Mitral Valve Prolapse which was common in young women and nothing to be worried about.
As the years progressed, symptoms started to increase. At 40 I had trouble breathing when I exercised and was diagnosed with asthma and given meds that seemed to help a little but not really.
In my 50s I repeatedly went to my Primary doctor complaining of shortness of breath with exertion and chest pain after eating. But symptoms came and went.
My stress test was normal and so was my echocardiogram (which I later found out, was not performed with a maneuver that would have detected HCM).
One day, I was on my way to the doctor. I ate 1/2 a sandwich in the car and walked 1/2 a block to her office and I was in excruciating chest pain. I told the nurse that the doctor needs to see me NOW, before I sit in the waiting room and the symptoms go away. The MD listened to my heart, said I had a 4 out of 6 systolic heart murmur and then shrugged her shoulders because all my tests were negative!!!! (smoke now coming out of MY ears).
That was the event that turned me into an avid self-advocate. I referred myself to a cardiologist and at the age of 57 I finally got diagnosed with HCM and began medical treatment.
Since then, there have been many more episodes of issues with doctors and surgeons including needing to have open heart surgery redone at Mayo Clinic where there are HCM specialists.
At 74 yrs old, I also have Coronary Artery Disease w/ stent and probably microvascular disease – and the fight to be believed and understood continues.
I am interviewing a new cardiologist next week. . .wish me luck!
LikeLiked by 1 person
Jill, your experience seems especially shocking compared to the “average” heart patient because, as a trained nurse, you likely expected your medical colleagues to believe what you were telling them.
That cardiologist who diagnosed you despite ordering NO cardiac tests reminds me of the Emergency doc who was somehow able to diagnose my heart attack as acid reflux from across the room without even any eye contact – some docs must have magical powers!
I’m so sorry that you had to go through all those years without appropriate care.
Take care, and stay safe out there. . . ♥
LikeLike
I waited 4 years and it ended with a heart transplant.
I was diagnosed with everything from hysterectomy to Chrohn’s Disease. It was so not fun.
LikeLiked by 1 person
Hello Roxanne – your story leading up to your heart transplant is a tragic tale of medical guesswork during a medical crisis.
For years, I’ve been following news about your progress both as a non-stop women’s heart advocate and a fierce champion of encouraging organ donation. In fact, I understand that you set a record this month in New York signing up 13,000 organ donors in one day! I heard one county official call you a “one-woman wrecking crew” when it comes to convincing others to sign up as organ donors.
Congratulations on continuing to help publicize this great need.
Take care, and keep up your awesome work! ♥
LikeLike