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””

How I used to describe SCAD. And what I’ve learned since.

by Carolyn Thomas    @HeartSisters

I’d never heard of the heart condition called Spontaneous Coronary Artery Dissection (SCAD) until I attended the WomenHeart Science & Leadership patient advocacy training at Mayo Clinic in 2008.  SCAD, I learned back then, was a rare and often fatal condition, seen mostly in young, healthy women who have few if any cardiac risk factors. But in a recent interview, cardiologists who specialize in this frequently misunderstood diagnosis added some surprising updates to what is now known about SCAD.     .        . Continue reading “How I used to describe SCAD. And what I’ve learned since.”

Six questions from Nancy about my blog

by Carolyn Thomas      @HeartSisters

I have never had breast cancer, and I don’t write about breast cancer (except rarely). But I noticed soon after launching my Heart Sisters blog that a surprising number of women with breast cancer were reading, subscribing and responding to my blog articles on women’s heart disease. One of my favourites in this group was author and breast cancer activist Nancy Stordahl, who blogs at Nancy’s PointWe’ve never met in person, but Nancy and I have agreed over the years that the traumatic experience of facing a catastrophic diagnosis is shared by many, no matter what that medical condition may be.

So when Nancy invited me to participate in her 2021 Summer Blogging Challenge, I was pleased to oblige one of my favourite bloggers by answering the six questions that she asked about my blog:    .    .   Continue reading “Six questions from Nancy about my blog”

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’.””

Why patients don’t have admin assistants

                   Moments from the full, rich life of patient partner Lelainia Lloyd *

by Carolyn Thomas     @HeartSisters

Patients can sometimes be sickly people in bed, wearing embarrassingly undignified bum-baring hospital gowns.

Patients can also be experts in the lived experience of their own diagnoses,  who contribute to medical research and education teams as partners in meaningful academic projects.

If you’re surprised by that last description, you’ll be even more surprised by all the things that many patient partners can do in life (besides laying around being sickly).       .        . Continue reading “Why patients don’t have admin assistants”