Dear Carolyn: “I take issue with the heart attack terms STEMI and NSTEMI”

by Carolyn Thomas   ♥   @HeartSisters

Today, in this Dear Carolyn episode (our 11th in the occasional series featuring Heart Sisters readers sharing their heart patient perspectives), we’ll attempt to address my reader Eva’s observations about how our heart attacks are currently classified:

I take issue with the terms STEMI (the most serious type of heart attack) and NSTEMI (a slightly less serious heart attack). But both types of heart attack have a serious impact on our lives and how we live them.”             

Dear Eva,

The day I first read your comment in response to an earlier Heart Sisters post coincided with the tragic heart attack death of a woman in an American hospital’s Emergency Department. Continue reading “Dear Carolyn: “I take issue with the heart attack terms STEMI and NSTEMI””

Diagnostic uncertainty: when we just don’t know

by Carolyn Thomas      @HeartSisters

The image above is all about uncertainty. It’s like a 5-step roadmap that you’d use when traveling an unfamiliar road to a new destination you know nothing about and do not want to visit.(1)  For people experiencing scary symptoms they fear might be heart-related, for example, uncertainty about what’s happening now and what will happen next is pervasive. But a new study published in the journal Patient Education and Counseling reminds us that patients aren’t the only ones facing uncertainty around a medical diagnosis: “Both patients and clinicians experience diagnostic uncertainty, but in different ways.”(2)        .        .   Continue reading “Diagnostic uncertainty: when we just don’t know”

False hope: better than no hope?

by Carolyn Thomas      @HeartSisters

My former colleagues in palliative care often spoke about the concept of hope as being a fluid, ever-changing state of being. When we’re suddenly face-to-face with a frightening medical crisis, for example, we hope at first that maybe the diagnostic tests were wrong. When the diagnosis is confirmed, we hope that this treatment/this procedure/ this drug will be the cure. But if we’re not cured, we hope that our symptoms can be managed so we don’t suffer. If we do get worse, we hope that our suffering won’t become a burden to our families. Then we hope that after we’re gone, our loved ones will be taken care of.

There was never talk about “no hope”.  There is always hope.  But our hope changes.     .             . Continue reading “False hope: better than no hope?”

Women’s misdiagnosed heart attacks: the COVID long-haulers of cardiology

by Carolyn Thomas      @HeartSisters

Ed Yong, my favourite Pulitzer Prize-winning science writer over at The Atlantic, wrote recently that, when he first started reporting on the medical phenomenon called “long-COVID” (meaning ongoing debilitating COVID symptoms that continue far longer than eight weeks), few scientists or physicians knew that it existed – and more importantly, many even doubted that it did:

“Some researchers still hesitate to recognize long-COVID if it doesn’t present in certain ways; they’re running studies without listening to patients. Long-haulers are growing frustrated that what is self-evident to them – that their condition is very real and in need of urgent attention – is taking a worrying amount of time to be acknowledged.”

That paragraph beautifully captures what women whose heart attack symptoms were initially dismissed have described as well – that sense of not being listened to during a heart attack that was “very real”.    .     .    .

Continue reading “Women’s misdiagnosed heart attacks: the COVID long-haulers of cardiology”

“Be alert to both the absence of normal as well as the presence of abnormal”

by Carolyn Thomas      @HeartSisters

It isn’t often that I’m wide awake at 1 a.m. But sometimes, a dream or a fire truck siren or whatever jolts me so wide awake in the middle of the night that sleep seems suddenly impossible. When this does happen, I’ve learned that I can sometimes lull myself back to sleep by turning on my bedside radio. (Radios! Remember those?)  My old clock radio is tuned permanently to CBC, our national Canadian broadcaster. And 1 a.m. is when CBC runs the Public Radio International program called “The World” . I love that show.

It isn’t often that I hear something on The World so perfectly applicable to women’s heart attacks that I’m moved to sit up in bed, grab a Sharpie and the little stack of post-it notes beside said radio, and quickly scribble down the words before I forget what’s just been said. But this was one of those times.         .    .    Continue reading ““Be alert to both the absence of normal as well as the presence of abnormal””

Dear Carolyn: “I couldn’t tell if my pain was ‘normal’.”

by Carolyn Thomas     @HeartSisters

I happen to have a pain specialist in my family:  my darling 6-year old granddaughter Everly Rose, who studies her assorted owies very seriously. She updates me at each visit on how every scratch, scar or scab is coming along, rating the pain that each injury caused her on the playground, at summer day camp, or while playing with Homie, her cat. 

I, on the other hand, am apparently keen on NOT making a fuss, no matter what – yes, even the chest and left arm pain that continued during my own misdiagnosed heart attack.

One of my Toronto readers told me recently about the time that she too could not bring herself to describe her pain as pain.  As part of my occasional “Dear Carolyn” series of reader narratives, I’m sharing her story here. Notice how many times she avoids revealing her true pain:       .          .   Continue reading “Dear Carolyn: “I couldn’t tell if my pain was ‘normal’.””