Is SCAD rare? Or just rarely diagnosed correctly?

10 Feb

by Carolyn Thomas   @HeartSisters    February 10, 2019

I was happy to see Katherine Leon featured in The New York Times recently. Katherine, like me, is a graduate of the WomenHeart Science & Leadership patient advocacy training at Mayo Clinic. She told the Times of undergoing emergency coronary bypass surgery at age 38, several days after her severe cardiac symptoms had been dismissed by doctors who told her, “There’s nothing wrong with you.” She isn’t alone. Many, many studies have shown that female heart patients are significantly more likely to be under-diagnosed – and worse, often under-treated even when appropriately diagnosed – compared to our male counterparts. This is especially true for women with her condition (Spontaneous Coronary Artery Dissection, or SCAD) that was once considered to be a rare disease. Dr. Sharonne Hayes is also featured in the NYT piece; she’s a respected Mayo Clinic cardiologist, longtime SCAD researcher and founder of the Mayo Women’s Heart Clinic. (You can read their story here).

But almost as soon as the Times piece was published online, I was gobsmacked to see some of the reader comments coming in – especially comments from people like these:   Continue reading

Recuperation and a red leather chair

10 Feb

by Carolyn Thomas    @HeartSisters    February 10, 2019

I absolutely loved the questions that Nancy Stordahl recently posed to her Nancy’s Point blog readers:

“Do you associate certain things with certain events in your life? Is there something that always takes you back to that time or place – a piece of clothing, an item of food, a scent or smell, a vehicle or even a piece of furniture? What is a trigger that reminds you of your diagnosis, treatment, or ‘that time’?”

Nancy went on to tell a touching story of getting rid of her much-loved blue leather sofa and matching chair, and the association of those items with her breast cancer diagnosis and recuperation, among many other important family events, both happy and awful, over many years. Inspired by her nostalgic recall of such associations, I answered her questions by describing a piece of furniture in my own home that still reminds me of what it was like when I first became a patient.   Continue reading

The dilemma of the death certificate

3 Feb
by Carolyn Thomas     @HeartSisters    February 3, 2019
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In a good old-fashioned murder mystery, we know that the plot starts to heat up when the dead body is discovered and the cause of death determined. But in real life, most of us will not die quite so dramatically.
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If we live with one or more chronic illnesses, in fact, the name of at least one of those diagnoses will probably be listed on our official death certificates someday. (We could also get run over by a bus long before then, but let’s face it, chronic diseases cause 70% of deaths worldwide).
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It struck me recently that, had I died during what doctors call my widowmaker heart attack in 2008, the official cause of death would have likely read “myocardial infarction”. But that would have been wrong. The actual cause of my death would have been that I was misdiagnosed with acid reflux and sent home from the Emergency Department.
Continue reading

Drawing a picture of your diagnosis

27 Jan

 

Part of my latest mandala (a work in progress)

by Carolyn Thomas   @HeartSisters    January 27, 2019

The late Madeleine Shields was a gifted artist and teacher here on the west coast of Canada. But more importantly to me, she was MY teacher. Her artistic expression of choice was the mandala, a Sanskrit word for “circle”. The mandala practice of Madeleine Shields was not what you might see in adult colouring books or on painted rocks at craft fairs. Hers was based on an ancient spiritual and meditative practice that she compared to “painting a mirror”. I can sometimes still hear her distinctive voice in my ear asking pointedly, “Did you do it well, or did you do it fast?”

A recent study supports what Madeleine had already figured out 20 years before her death, that art can intuitively reflect our deepest emotions in a surprisingly accurate fashion – and that’s especially true when we become patients. Continue reading

Failure to inspire

20 Jan

by Carolyn Thomas   @HeartSisters    January 20, 2019

Blogging sometimes feels like a cross between therapy (writing about what I’m obsessing over at any given moment) and planning a classroom lecture (getting my own thoughts in order about very specific subjects). 

But if you’ve been here before, you already know that one of my favourite parts of noodling away on this blog is the interactive response from my readers. This is always a two-way street. Your comments make me laugh, they make me cry, they almost always make me want to respond. My favourite kind of reader comment: “I thought I was the only one who felt this way. . . “

But what some of you may not know is that sometimes, readers can also make me feel tired and cranky.    Continue reading