by Carolyn Thomas ♥ @HeartSisters
There are a number of issues that leaped out at me about the hospital story you’re about to read. Let’s see how many of them you observe, too – and how many could have been prevented. This story is told by Ann, an Australian heart patient whose cardiac journey began in 2007 when she was 51 years old. But over the years since then, she has continued to suffer debilitating cardiac symptoms almost every day.
Her symptoms include not just chest pain, but pain throughout her upper back, jaw, shoulder, neck or arm, occasionally with severe shortness of breath. Despite taking a fistful of daily heart meds and wearing a nitro patch to help manage pain, Ann is rarely able to sleep through an entire night without being awoken by these symptoms. And here’s why . . .
Ann (not her real name, as she has requested) was finally diagnosed four years ago with two under-recognized forms of coronary artery disease that are most commonly found in female patients. But until her correct diagnoses were confirmed, many cardiologists and Emergency physicians Ann met over the years had told her repeatedly that her symptoms “cannot possibly be heart-related, because your coronary arteries are clear.”
After surviving a serious heart attack known as a STEMI (ST Elevation Myocardial Infarction) in 2007, Ann was also subsequently diagnosed with these two cardiac conditions:
1. Inoperable Coronary Microvascular Disease (MVD): also called small vessel disease (i.e. not caused by a big obstruction in a big coronary artery, but likely due to a dysfunction of the lining – endothelium – of the artery walls). I too share this diagnosis with Ann, and as I’ve written here, here and here, Mayo Clinic cardiologists sometimes call MVD a “trash basket diagnosis”. That’s not because the condition doesn’t exist, but because this disorder of the tiniest blood vessels feeding the heart muscle is so often missed entirely. ECG, cardiac enzyme blood tests, stress tests, and even (the gold standard) angiogram are all standard cardiac diagnostic tests that are unlikely to accurately identify MVD.* Often, a correct MVD diagnosis happens only after all other possible diagnoses are thrown out. It’s also why physicians kept dismissing Ann’s severe symptoms – because her standard cardiac tests appeared to be “normal”. And take it from me, once you’ve been definitively misdiagnosed based on your “normal” diagnostic results, further cardiac tests are rarely ordered. As Los Angeles cardiologist Dr. Noel Bairey Merz says, because microvascular disease “is not detected by standard diagnostic procedures, it goes unrecognized and untreated.”
2. Coronary Artery Spasm (CAS): also called Prinzmetal’s Variant Angina. This is caused by a sudden narrowing or constriction of coronary arteries. And just like those more commonly found big plaque obstructions in big arteries, a spasm can cause painful angina because it prevents oxygenated blood from reaching the heart muscle. Mayo Clinic cardiologists explain this non-obstructive condition like this: if a spasm episode lasts long enough, it can lead to severe chest pain (angina), dangerous heart rhythm disturbances (arrhythmia), or heart attack (myocardial infarction). Delay in diagnosing a vasospasm disorder is a serious and deadly concern.*
Such misdiagnoses are regrettably common in women – regardless of the cardiac event being misdiagnosed. A landmark study published in the New England Journal of Medicine, for example, reported that female heart patients under age 55 are seven times more likely to be misdiagnosed and sent home from Emergency compared to our male counterparts.(1)
On rare occasions, Ann’s symptoms become so severe that her prescription nitroglycerin spray cannot relieve them at home. She has had to make a number of Emergency Department visits over the years due to persistent bouts of terrifying chest pain, or for chest pain that was only partially relieved, uncontrolled by her nitro spray. During these trips to Emergency, she sometimes receives I.V. nitroglycerin infusions to effectively relieve these severe symptoms, but other times (depending on the hospital) Emergency staff refuse to provide the same nitro infusion – because “we don’t do that here.” Her last infusion was about two years ago.
To help prevent this inconsistent treatment from happening again, Ann now carries her cardiologist’s letter (written by a senior cardiologist with significant experience in treating microvascular and coronary spasm disorders). The letter requests that Emergency personnel start an I.V. nitroglycerin infusion to treat future prolonged bouts of Ann’s intractable angina.
Keep in mind while you’re reading Ann’s own words (below), that unlike many women presenting to Emergency who do not know what’s wrong, she had been correctly diagnosed with these two forms of non-obstructive heart disease four years ago.
Yet during a particularly fateful visit to the Emergency Department recently, she still encountered shockingly substandard care that led to needless suffering. See if you can peg the most preventable areas of concern during Ann’s time at the hospital, as she describes in this compelling narrative:
“Had a very interesting experience in the Emergency Department yesterday. I could hardly believe it. I went to hospital because I had had a particularly difficult night with chest pain, had been having an increase in frequency and intensity of chest pain, and had been advised to go to Emergency by the Australian Heart Foundation health information service.
“In Emergency, staff phoned a cardiologist to describe my condition. His response was relayed to me by the Emergency physician: ‘You can stay in the Emergency Department overnight but we will NOT give you a nitroglycerin infusion’ (in spite of that letter from my treating physician with instructions to do so). ‘We will not give you a holiday. You have normal coronary arteries and spasms are not dangerous! You should be reassured by this.’
“I immediately concluded that I would not stay. I told the Emergency doctor that I might as well leave, since they would be offering me no help.
“She asked me to stay for blood test results, but offered no pain relief of any kind during the time I was there. I figured I was better off on my own – because at least I would have my nitro spray.
“So I rang the call bell to arrange the discharge with the nurse. No one came.
“I disconnected the oximeter (which caused loud warning noises). No one came.
“I rang the bell again. No one came.
“I removed the blood pressure cuff. No one came.
“I rang the bell again. No one came.
“I removed the ECG leads (which caused loud warning noises). No one came.
“I gave myself some nitro spray. (Well, no one came…)
“I rang the bell again. No one came.
“I removed the I.V. which created a bit of a mess, but no one noticed – because no one came.
“I closed the curtains and got dressed. I rang the bell again. No one came.
“I collected up my things, looked around, began to walk out of the cubicle and a passing nurse smiled at me. I left and no one noticed.
“I have learned a lot from this particular experience. I will not go to that Emergency Department ever again.
“There really is a huge difference of opinion amongst cardiologists about the validity of the pain, appropriate treatment protocols and potential dangers associated with Coronary Microvascular Disease and Coronary Artery Spasm.
“I really am on my own.”
Ann’s story illustrates key examples of several preventable problems.
But is this about systemic problems, or a patient decision-making problem, or a problem with individual health care providers?
When I followed up with Ann, here’s her own list of the issues revealed in her story:
- No pain relief offered
- Disregard for my condition (despite letter from my cardiologist)
- Self-discharge went unnoticed
- My biggest mistake: assuming that the cardiologist would look after me with respect
(1) Pope JH, Aufderheide TP, Ruthazer R, et al. Missed diagnoses of acute cardiac ischemia in the emergency department. N Engl J Med. 2000;342:1163-1170.
♥ Need a translator for some of these cardiology terms? Visit my Heart Sisters patient-friendly, no-jargon glossary.
NOTE FROM CAROLYN: I wrote more about non-obstructive heart disease in my new book, “A Woman’s Guide to Living with Heart Disease”(Johns Hopkins University, November 2017). You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) atAmazon, or order it directly from my publisher, Johns Hopkins University Press (use the code HTWN to save 20% off the list price).
* Learn more about diagnosing non-obstructive coronary artery disease
Q: Are patients like Ann really on their own?
Misdiagnosed: women’s coronary microvascular and spasm pain
No blockages: Living with non-obstructive heart disease
The freakish nature of cardiac pain
Coronary Microvascular Disease: a “trash basket diagnosis”?
My love-hate relationship with my little black box – my own experience with an MVD diagnosis
A cardiologist’s advice on how to use this “wonder drug” – all about nitroglycerin
Misdiagnosis: the perils of “unwarranted certainty”
Heart attacks: “Men explode, but women erode”
21 thoughts on ““I rang the bell again. No one came.””
I have been dealing with situation so similar to Ann. I get the sudden Angina sensations, tachycardia since my late 20’s. I was diagnosed with MVP (mitral valve prolapse) with mild regurgitation noted by the echocardiogram.
Now 59, these sudden Angina sensations create ‘normal’ reports. They see the EKG and it’s normal. They give non-walk stress test and it’s normal … then I would always say; I’m not lying, doctor, I feel them and they are getting harder to endure.
When the Angina sensations hit, I get these: heart squeezes like a sponge, then the scratching of gravel on top of the heart. I can barely breathe. Shallow breaths creates a nausea-dizzy feeling. Headaches have started now, and Lord, I become so very very tired. I sure would like to know what is wrong with my heart.
I wish to know what specialist facility can possibly help me.
Someone out there, please respond.
Hi Paulette – I’m not a physician so cannot comment on your specific symptoms, but I can tell you generally that people living with MVP can report symptoms like palpitations, chest discomfort or fatigue. Many times, MVP is considered harmless and requires no treatment, but valve repair or replacement are options down the road if symptoms become severe. Here’s a good resource to learn as much as you can. Ask your doctor about a treatment plan.
Paulette, I have had Prinzmetals for years. Only one doctor – an ER resident – and a paramedic, have had any idea about the condition. I have never received treatment from GP or Emergency or cardiac Drs. No troponins from blood test, so no medical condition, they say. I’m in Australia. I’d like to find a specialist or a medical facility that knows how to diagnose and treat this condition too. In Melbourne Australia.
Marcus, at least one of my blog readers with Prinzmetals has been treated at the Baker ID Heart and Diabetes Research Institute in Melbourne. And – a much longer drive for you! – also check out the cardiology department at the Queen Elizabeth Hospital in Adelaide which does do spasm provocation testing. Best of luck to you….
You ladies are really starting to scare me. I have had some relief using 500 to 1000 mg of taurine for the angina stuff over the years. I don’t think I have the microvascular condition, I just have CHF since 2009 but I have had 4 heart attacks and one stroke, and recently I have had more chest pain and I don’t have a history of blockages or calcification so maybe the microvascular stuff is starting. I am now 48 years old and I was looking for information on the effects of menopause on congestive heart failure. oh well I will keep searching. Hope the Taurine helps you.
I have had occasional chest pain, jaw pain, neck pain and mid-back pain. Nitro didn’t help as much as one aspirin did. I also have pictures of blockage-free arteries during one of these episodes, a BP of 190/88. The hospital’s conclusion: I suffer from cardiovascular disease and high BP, also pre-diabetic. Not sure if I should even go to ER the next time.
Hello Mary – I’m not a physician so can’t comment on your specific symptoms, but if you’ve already been diagnosed with cardiovascular disease, you must have been given some sort of treatment plan to help manage it as well as your blood pressure/pre-diabetes issues. See your regular physician to review this plan, and follow all instructions carefully. Right now your symptoms may or may not be heart-related but you just don’t know for sure. Try keeping a symptom journal to track what you’re doing/eating/feeling in the hours leading up to each symptom – this may help you and your physician to solve the mystery. And do some homework to educate yourself as much as possible so you don’t feel like a helpless victim. Best of luck to you…
(NOTE: This comment has been edited for space)
Why do you all think that Doctors, hospitals, sometimes family members and others don’t take a woman seriously when it comes to illnesses? Especially when it comes to a woman’s heart? I know that we all know our bodies very well and when there is something wrong, we know it. We know because of the new and unusual pain that we experience, plus I sincerely believe that our intuition at times will scream out to us: “Hey you! Get yourself to the Doctor!”
Women are especially in tune with their bodies. My advice to each of you is to push it if you know that something is not right. It is your body, your life, and you know! I love this website! It has taught me a lot and has given me a few ideas to talk with my doctor about! I am so happy that I found you all!!! Take care of those hearts! Take care of you! 😍
LikeLiked by 1 person
Hi Rebecca and thanks for your comment (because of its length, I’m publishing just part of it here). The issue in your story that I most appreciated was your wise reminder to other women to pay close attention and listen to that little voice inside that is telling us when “something’s wrong”. Far too many of us try to suffer in silence while ignoring that intuition you mention. Best of luck to you…
Thank you Carolyn. I tend to get very long winded. LOL! I do love how you edited that. That was the most important part. 🙂 I really enjoy this site! Thank you again!
LikeLiked by 1 person
Wow. I’m about speechless. That emergency department is so utterly substandard, I’m surprised it’s allowed to operate at all.
I’ve had, thankfully, very few ER visits over the years, but the care and attentiveness I’ve received has run the gamut. Perhaps the most idiotic was going to the ER after a fall on black ice about six years ago. I had slipped and fallen backwards, like a felled tree, slamming everything from my pelvis to my head on the concrete ground. Despite displaying a few of the characteristic symptoms of a concussion the entire two-and-a-half hours I was there (feeling slow, being uncontrollably sleepy), no one, NO ONE, assessed me for it. My pelvis and hips were Xrayed (negative, thank goodness) and I was sent home with the wrong advice. I had to figure it out myself the next day, when I was driving (!!) down my street and couldn’t remember if I should turn left or right. I had the wherewithal to call my own doctor, see him later, and get properly diagnosed. Nuts. Not to mention dangerous.
LikeLiked by 1 person
Wow, Kathi – missing a potential concussion diagnosis could indeed be dangerous! What if you weren’t the kind of patient who was capable of “figuring it out” the next day on your own?
Having worked in the hospital, I can understand that there are in fact times when staff simply cannot answer call bells when they’re understaffed or when trying desperately to help another patient (somebody bleeding out in the next room, for example, would be higher on the triage priority list).
But in Ann’s story above, the tragedy is not so much that she kept ringing that call bell in vain, but that staff had already assessed her needs incorrectly – which is why they didn’t feel that her call bells were that important.
Exactly. And broke two of the cardinal rules of diagnosis, which is to listen to and observe the patient very carefully. Oy.
LikeLiked by 1 person
I had issues with “chest pain” off and on for several years..escalating yearly 2008-now.. and a positive family history of heart disease. I am also a medical professional. I KNEW something cardiac was wrong. But the docs I saw just told me I was “stressed”.
All of the normal cardiac testing was always “normal”. FINALLY in 2010 I was diagnosed with coronary endothelial dysfunction when I traveled to Mayo Clinic in MN/saw Dr. Sharonne Hayes..and confirmed I did have heart disease.. no I was NOT NUTS.
My symptoms only progressed with time..my insurance limited where I could go for medical care..and in 2012 had to retire from practice early myself. I was just too physically ill and could not keep up.
Docs then kinda scoffed at me thinking I was blowing my symptoms out of proportion..and did a repeat challenge cath. My Left Anterior Descending coronary artery clamped down..V-FIB, cardiac arrest and I coded. THAT got their attention and then they agreed I had real heart issues.
Went home with an ICD (implantable defibrillator) as I have that kind of cath lab-reproduced pain often at home. Heck of a way to have to get your cardiologist’s attention, huh??
Now having issues with diastolic and chronic diastolic heart failure symptoms….but still have some medical staff WHEN I HAVE to go IN …who call my edema “somatic”..and me “malingering”, and if my cardiologist is not the attending on duty, then psych is called.
I am not nuts. I am not malingering. IV NITRO DOES help. I am NOT NTG (nitro) TOLERANT. But as ANN in Australia above also deduced – besides other heart sisters like me who live with these often disabling illnesses- am I indeed ON MY OWN TOO.
I have one cardiologist now locally who really does care… but the hospital here will not allow him to admit and give high dose IV nitro ..and he has tried. So sad.
Local hospital only treats heart disease that is typical. Sad.
But count my blessings daily ..and keep smiling… life is precious and each day a gift. Life gives you lemons, you make a lot of lemonade!!
LikeLiked by 1 person
Oh, Kim. What a heart-breaking story. It makes me feel both sad and furious, particularly the part where medical staff have the unmitigated gall to suspect “malingering” in a heart patient, one with an ICD, for God’s sake. How much malingering does it actually take to get one of those implanted in your chest? By now, you have had more than your lifetime quota of lemonade and I wish for you only kind and knowledgeable medical staff from now on.
Thanks for your sweet reply. Without my faith and a wonderful counselor I see named TIM, the lemonade production would be a lot harder for sure. Tim is a LPC-Licensed profesional counselor, faith-based. Not a doc, not medical. However, has seen me about monthly at least the past going on 5 years. He spends an hour with me, he witnesses the slow walking/dyspnea/real (not somatic) edema/my vasospasms and nitroglycerin hits. He has seen my continual physical decline. He has helped me to come to emotional terms; it is OK that I cannot practice myself right now, or do any job as I am not physically able to be gainfully employed ..not at all that I am lazy..and it’s not the end of the world.
My mind is so analytical and high work-ethic-composed, and I think always will be. There is ALWAYS HOPE, but if I do not return to active practice again, ever, that is OK too. Here Tim is in the mental health field and does not see me as malingering at all – complete opposite -a real strong person and a fighter.
But I have been pretty much abused by the medical health care system (a system I was a part of) ..and that makes both of us very frustrated too. I told him about this article, sent it to him… and he is going to make a priority to read- as I told him it was so powerful and I am in essence on my own but certainly not ALONE!!!
Just funny to me how a non-medical person CARES… and the majority of the medical community really is just plain rude and condescending to me ( except Dr. G, my local cardiologist, he teases around… tries to get me to smile, checks on me weekly, hugs when we say goodbye; he CARES… what a concept – but he even as a chief cardio cannot get the local hospital to give me high-dose IV nitro when needed, but he HAS tried, bless his heart.)
However, then too..I have a new way to handle all that too. Life is too short to be angry. It is not good for my heart at all. So at this point too, I laugh… I laugh often and a lot because some of the things all these docs say or propose are so far off the mark… In reality and retrospect it is funny. I am on a plane above them… and it’s a lot healthier for me than getting stressed out /angry and overly frustrated which is so darn easy to do after dealing with this nonsense so long.
Hope that makes sense !!!??
LikeLiked by 1 person
Makes perfect sense to me, Kim. Thank goodness you found Tim! He has already helped so much by supporting you in the fine art of acceptance (and really, “it’s not the end of the world” can be a very powerful reminder for almost everything we are faced with). I’m with you 100% when it comes to trying to let go of anger or resentment, no matter what has happened in the past. Can’t undo that! If you like to laugh, you might laugh (or cry!) at this post called “Stupid Things Doctors Say to Heart Patients“.
I couldn’t agree more with the contention that women’s voiced concerns are often severely minimized or worse. My yearly cardiology checkup was today and regardless how much I attempted to prepare myself for likely disregard for my concerns related to my stamina (lack of) and persistent fatigue, I still felt deeply disappointed and defeated.
My heart attack occurred in the fall of 2012 at age 56. It took three hours of escalating symptoms (chest pain and left arm pain, vomiting sweating, dizziness) before I accepted that I probably was having a heart attack and called for an ambulance. My treatment in the ER was generally positive, although not one staff member stated that I was having a heart attack. They started talking about taking me to the “Lab” and when I asked why, someone said you are having a heart attack. I had one 99% blockage and I had two stents placed within a short period of time. I was informed later that my heart attack was considered five percent short of a massive heart attack.
At the time of discharge (five days later) I was told that I would need to take one month off work. I left the hospital extremely weak and could barely function which I assumed was not unusual. Problematic responses regarding my weakness and fatigue began at the time of my first follow up visit with a Physician’s Assistant three weeks later. I mentioned that I was still very weak and tired, and he said he didn’t understand why that would be so. A few months later I had to beg to be taken off the beta blocker because my pulse was dipping into the thirties.
Almost two and a half years later, I consider myself to be about 2/3 of my pre-heart attack self. Again I mentioned to my doctor that by mid-afternoon I feel like someone pulled my plug out and following any day that is quite demanding physically (like watching my four year old grandson) I feel extremely drained and weak the next day.
He generally looks at me blankly and does not respond. It is like he has never had a patient have ongoing physical effects as a result of a heart attack. I know that many people are not the same after a heart attack and that I may never get more stamina back and feel hopeless that I will get more guidance and support from the cardiologist, but I feel like I am living in another universe every time I leave his office.
I think you’ve hit upon a reality that appears to be generally ignored by the medical profession, Susan: that we are always PERSONS first, who happen to have a particular diagnosis, and not the other way around. We’re not – as I overheard one of the ER nurses describe me during my own heart attack – simply the “MI in bed 8”. This apparent disconnect is precisely why health care professionals so often overlook the debilitating emotional/psychological fallout associated with surviving a cardiac event – it’s not even on their radar! As cardiologist Dr. Sharonne Hayes, founder of the Mayo Women’s Heart Clinic, once wrote:
“Cardiologists may not be comfortable with ‘touchy-feely’ stuff. They want to treat lipids and chest pain. And most are not trained to cope with mental health issues.”
Women are left totally on their own. I had to be my own health advocate, after a cardiologist said that my PCP could handle my case even after my NMR calcium score was off the charts. That was in 2012. I came from a family of parents and (9) aunts and uncles with coronary artery disease with all having heart surgery and only a few are still alive.
So my PCP sent me to another cardiologist where I passed all my tests, except the x-ray which he saw a little something at the base of my heart that was suspicious. I also had periods of shortness of breath and two episodes of a sharp pain in the center of my back. After the catheterization, he found 3 blockages.
I finally had my bypass surgery (CABG) in November 2014 which should have happened back in 2012. Every time I mentioned the piercing center back pain, both cardiologists said that wasn’t a symptom.
So ladies, you have to be your own health advocate because unless you have men’s symptoms, you will be ignored. Good luck and God bless you ladies.
LikeLiked by 1 person
Thanks for sharing your story, June. A 2-year delay in correct diagnosis is two years too long. I did have “men’s symptoms” (central chest pain, nausea, sweating, pain down my left arm) yet was also misdiagnosed – so even presenting with textbook Hollywood Heart Attack symptoms does not necessarily guarantee an appropriate diagnosis. My advice to others now: “You KNOW your body! You know when something is just not right. Keep seeking help until you get the help you need.”