“Dear Carolyn: I was never one to complain. . . “

10 Jun

by Carolyn Thomas    @HeartSisters    June 10, 2018

Sometimes, the story of how another woman first discovered she had heart disease can seem eerily familiar to our own. It’s that familiarity that first attracted me to this Dear Carolyn episode (our fourth in the occasional series that features my Heart Sisters readers sharing the unique experience of what it can feel like to become a heart patient).

This particular blog reader, who prefers to remain anonymous, explains her reluctance to seek medical help while repeatedly blaming her distressing symptoms on non-cardiac causes. I completely identified with that reluctance because I went through that same surreal refusal to seek help for my own worsening cardiac symptoms after being misdiagnosed in the E.R. with acid reflux. If you, too, have ever engaged in what researchers call “treatment-seeking delay behaviour” during a heart attack, her story might feel familiar to you, too.

Dear Carolyn,

“I really don’t know how or what led me here to your website, but it was either before – or during! – my cardiac event. I was desperately searching for answers to some alarming symptoms I was experiencing at that time. I live in Canada, and I also took comfort that this was a Canadian-based site.

“I was terrified, and I kept going back to your blog article entitled “How does it really feel to have a heart attack? Women survivors answer that question.  I could not get enough of the stories and experiences I was reading about from other women just like me.

“I wanted to read (yet not!) – maybe just to substantiate my own concerns of how I was feeling at the time. There were many women from different ages and so many individual personal scenarios and experiences, but it certainly got me thinking. This segment really helped me a lot.

“Your website surely helped lend a hand in saving my life. Not every Google search for my distressing symptoms ticked every box and I was never one to complain (probably just a bit of stress, maybe a chest infection, maybe the flu, over-exertion physically, busy, tired and achy, insert excuse here_____!)

“What I needed to read were personal accounts of real women – and I got that here.

“I had been passing off my unwellness, thinking maybe it was just a chest infection or pneumonia. I had experienced pneumonia two years prior, and I wondered if this were the same or a similar condition. I also wondered, with all my Dr. Google searches, where my diagnosis would lead. But in October of 2017, I finally dragged myself to a walk-in clinic after a week or more of feeling really unwell.

“I told the doctor that my arms felt like lead, and that I was having waves of pain throughout the day and then the pain would lift for a while but then return. I was prescribed Amoxicillin. No tests or chest x-rays needed, the doctor said. He told me just to try the medication. As I left the clinic, the pain lifted; I happily drove home and the world seemed right again. I had my meds now, and I was sure that in a couple of days, I would be on the mend.

“But 4-5 days later, I was still having these intermittent symptoms, and my family urged me to go to the Emergency Department. But it was Thanksgiving weekend and our local Emergency is SO busy. I could not fathom waiting in line for hours, triaged to the bottom of the urgency list.

“I thought maybe the antibiotics prescribed were not strong enough. I would just wait. My loving family was somewhat annoyed with me for being stubborn. I couldn’t go through that again, sitting with waves of unusual pain I could barely describe.

“In hindsight, I never knew my pain was chest pain, otherwise in all fairness I’m sure I would have been seen immediately. I didn’t know that then.

“After the Monday Thanksgiving holiday (with my family enjoying – and cooking – dinner while I laid down), and remembering those Heart Sisters articles, I finally contacted my family physician’s office and was able to see her the next day.

“She sent me immediately for an entire work-up of labs and diagnostic tests. After the EKG, the lab told me to take the results in an envelope back down to my physician’s office before I left the building. My doctor was waiting for me and told me I was most likely having a cardiac event right then and there. I was escorted across the street to Emergency in a wheelchair.

“After admission to the hospital, the head cardiologist told me that I’d likely experienced a heart attack weeks earlier, too.

“That timeline exactly fit when I started feeling waves of discomfort. I guess I kept going to work each day for weeks after the heart attack, just trying to get through it. Little did I know. . .  I was scheduled right away for an angiogram at St. Boniface Hospital.

“It was on this day that I had a stent implanted by one competent Dr. Michael Love, a fitting name indeed for a cardiologist, I thought. He was thorough, articulate and communicative, which made me happy. I apparently had a 95% blockage in my left anterior descending coronary artery.

“The entire scenario from early discomfort/pain to diagnosis to coronary stent was an unexpected and overwhelming experience, to say the least. It gives a whole new meaning to an exclusive Second Chance Club that many women are lucky enough to be a privileged part of.

“Life is changing. I now exercise by walking 1-3 miles per day (in my living room during our brutal winter) and have discovered an entirely new and challenging dietary plan for my husband and myself.

“Admittedly, I must be a stubborn woman at 56 years of age by not really realizing or believing what was happening to me at the time, but I am glad to be here. Your Heart Sisters blog was one of the first I landed upon, and is an invaluable resource about women and heart disease. Thanks very much for your continued efforts. Keep up the great work. 😊

“I’m happy to share my real life everyday story I’ve experienced if only to help others – just as other women’s stories have helped me as I desperately searched for information.”

If you are experiencing distressing symptoms that are unusual for you, please seek medical help. Call 911. Don’t try to minimize your symptoms. Say: “I think I’m having a heart attack!” Chew one full-strength aspirin with water if you like (unless you’re allergic or are already taking blood-thinning meds).

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Q: Have you ever delayed seeking help despite distressing symptoms?

NOTE FROM CAROLYN:   I wrote much more about women’s heart attack symptoms (Chapter 1) and why women tend to delay seeking treatment (Chapter 2) in my book, “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University Press, 2017).

See also:

8 Responses to ““Dear Carolyn: I was never one to complain. . . “”

  1. Eve Hauser June 11, 2018 at 8:45 am #

    I’ve posted my story before but this week’s discussion gives reason to repeat it. I had a massive heart attack and delayed getting medical assistance for 2 weeks, at which point I was in severe distress, for a number of reasons, including financial (no health insurance) and the denial that we all feel when faced with our mortality.

    I was not so fortunate once I finally went to the Emergency Department of my local hospital, the docs couldn’t stent me and a bypass was out of the question too. I had lost too much muscle, you can’t bypass unless there is healthy tissue to bypass to.

    I spent 3 weeks in the hospital, 2 1/2 weeks of it in a larger university hospital being vetted for transplant. Luckily for me (and to my doctor’s amazement) medications stabilized me and I am living a full life nearly 8 years later on these same meds.

    We must stop treating ourselves – and allowing others to treat us – as less important than others. I wish I had more concern for my own well being when my heart struck me. It was almost a fatal mistake, one that I’ll never make again.

    Liked by 1 person

    • Carolyn Thomas June 11, 2018 at 9:33 am #

      Hello Eve – you are like the poster child for what delayed medical treatment can mean! You are so lucky – and thanks for the reminder that in many cases, medications alone can allow heart patients to stabilize and recover from even the most dramatic cardiac crisis. You are 100% correct in your advice that women MUST stop treating ourselves as less important than others. It’s why I often ask “What would you advise other women you love – your mother, sister, friend, daughter – who was experiencing the identical symptoms you are having?” There’s the answer….

      Like

  2. Roxanne Watson June 10, 2018 at 7:36 pm #

    We make excuses then we are surprised when we die.

    Liked by 1 person

    • Carolyn Thomas June 11, 2018 at 6:12 am #

      Sadly, true. I spoke at a memorial event last year for a woman who had died of a heart attack, alone in her home. The day before she was found, she had told her daughter about her increasing cardiac symptoms, but had decided against calling 911. Tragic…

      Like

  3. Lynn June 10, 2018 at 8:36 am #

    This woman’s account reminds me of my own heart attack — and why I didn’t seek treatment earlier.

    I used to think of heart attacks as very sudden, very painful and very dramatic….if you were having a heart attack, you’d clutch your chest and fall to the floor.

    That wasn’t my experience at all. For weeks, I had some shortness of breath….but I’d had asthma as a kid, and it felt a little like that, though not as intense as asthma. I was very tired, but I was working crazy hours at a challenging job. All of my co-workers, even the kids just out of college, were exhausted. I had a little indigestion, but I was eating a lot of take-out and fast food… like my co-workers. Who had time to cook, with a work schedule like ours?

    So, I continued working, driving, and even exercising. Finally, it occurred to me that this had just gone on for too long, and maybe it was time to see the doctor for some asthma medicine. I didn’t even take the first appointment that I was offered because I didn’t want to leave work early that day. I made an appointment for two days later.

    My EKG was normal, but the doctor didn’t think I had asthma either. She ordered a blood test — and later that evening, the test results indicated a heart attack. I had elevated levels of a cardiac enzyme, troponin, in my blood, which indicated stress to a coronary artery. The doctor on duty called me at home, and told me to hang up and call 911 immediately.

    Even then, I wasn’t convinced that I was having or had had a heart attack. I didn’t have chest (or arm, neck, or shoulder) pain; I was up, walking around. The test had to be wrong. But the on-duty doctor was just so insistent, that I called 911, and went to the ER.
    In the cath lab, the cardiologist did find blockage in an artery. Only then did I believe that yes, I really had had a heart attack.

    I didn’t know that having a heart attack could be so un-dramatic, and many women that I’ve talked with since also say that they didn’t know that a heart attack could be like mine.

    I am a private person. I don’t like to talk about my health, but I feel compelled to share my story so that people know more about heart attack symptoms.

    This blog does a great service in raising awareness of heart disease in women.

    Liked by 1 person

    • Carolyn Thomas June 10, 2018 at 9:41 am #

      Thanks very much for sharing your own experience here, Lynn. What you went through – all the while refusing to believe what was actually happening – is so common, especially among female heart patients, that researchers have published countless papers in medical journals about this strange phenomenon!

      I’m glad you mentioned one important reason contributing to our denial: the broadly accepted public stereotype perpetuated in the media that so many of us have about what a heart attack has to look like. That image of a man (it’s almost always a man!) clutching his chest and falling unconscious to the floor does NOT represent a heart attack. That’s sudden cardiac arrest, which is an electrical problem, not the plumbing problem that is a heart attack.

      During my heart attack, I could walk and talk and drive my car and walk into the ER (so really, I thought, how could this be a heart attack?)

      In women like me and you, that IS what a heart attack can look like.

      Like

  4. Dr. Anne Stohrer June 10, 2018 at 8:14 am #

    Well, yes. “Oh it’s only indigestion.” “I can’t go to the ER, I’m on call and they are expecting me to work.” and so on.

    Denial is not just a river in Egypt.

    Liked by 1 person

    • Carolyn Thomas June 10, 2018 at 9:49 am #

      Hello Dr. Anne – it absolutely is NOT just a river… 😉 Thanks for reminding us that even physicians in the middle of a heart attack can respond with the same kind of denial that researchers tell us is common in many women (for example, one of the six most common excuses cited by women for not seeking immediate cardiac treatment is called Knowing and Going on the Patient’s Own Terms (in which “women want to remain in control, are not willing to let others make decisions for them, and openly acknowledge that they did not like to ask others for help”). Knowing that others are counting on us is a powerful way to dissuade us from seeking help for ourselves, or putting ourselves low down on that priority list of what needs doing!

      Like

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