It’s Invisible Illness Awareness Week!

9 Sep

Dearest heart sisters,

If you live with an invisible illness (as almost all heart patients do), this is your week, no matter what your diagnosis.  I encourage you to visit the Invisible Illness Week site, all about those of us living with serious health conditions that nobody else can see. It’s an annual educational campaign about how often illness is utterly invisible to others, how to be sensitive to those living with these challenges, and how to learn from their unique experiences.
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The freakish nature of cardiac pain

7 Sep

by Carolyn Thomas  ♥  @HeartSisters

Part 1 of a 3-part series about pain

I was thinking about the freakish nature of pain the other day. I think about pain quite a bit, actually, given the frequency with which I now experience the ongoing symptoms of Coronary Microvascular Disease.

But six years ago, when the first alarming warning signs of a heart attack struck out of the blue while I was out for a pre-breakfast walk, the reality was not at all what I would have ever imagined a heart attack to feel like.

And because I was clueless, I believed the Emergency Department physician who misdiagnosed me with acid reflux and sent me home that same morning. Continue reading

The hospital discharge race: is sooner always better?

31 Aug

by Carolyn Thomas  @HeartSisters

wheelchairThey say that if you can remember the 1960s, you weren’t there. I do remember this about 1966, however:  I spent my birthday that year in a hospital bed, where I’d been a patient for a full month recuperating from a ruptured appendix and a nasty case of peritonitis.  Back then during the dawn of civilization, it was common for patients to spend far longer in hospital than we ever would now. For example:
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Heart scans: the triumph of profit over science

24 Aug

by Carolyn Thomas  @HeartSisters

This kind of ad is part of a growing marketing strategy to cash in on your fears. They’re run by for-profit hospitals, medical centres, and sometimes just non-professional entrepreneurs who park their big mobile body imaging vans in church, mall or community parking lots.

For example, an ad from the Heart Hospital of Austin in Texas reads:

“Find a new way to tell Dad you love him! Show your love with a HeartSaver CT Scan!”

The website Track Your Plaque warns:

“The old tests for heart disease were wrong – dead wrong. Heart scans are the most important health test you can get!”

A radio ad for the Princeton Longevity Center in Princeton, New Jersey asks:

“Does your annual physical use the latest technology to prevent heart disease before it strikes?”

And this center’s website further promises that its full-day exams – which include heart scans and usually are not covered by health insurance plans – can detect the “silent killers that are often missed in a typical physical exam or routine blood tests.”

Yet most major health agencies (like the American Heart Association, the American College of Radiology, the American Cancer Society) do not recommend routine use of heart scans in low-risk people without heart-related symptoms.  Continue reading

When we don’t look as sick as we feel

17 Aug

by Carolyn Thomas  @HeartSisters

One morning, I overheard two of my co-workers chatting over coffee at the hospice palliative care unit where we’d worked together for several years. They were talking about one of our colleagues who had been off work on an extended sick leave. One said to the other:

“Oh, I saw ____ the other day. She was out riding her BICYCLE!” 

The way she said the word ‘bicycle’ stuck with me, tossed off with that pared down judgmental tone we use when what we really want to say is: “Hmph… Must be nice!”  The tone somehow implied that anybody who can hop on a bike and toodle around the neighbourhood on a sunny day couldn’t be THAT sick after all. Continue reading

Why patient stories actually matter

10 Aug

Most of our medical visits start with some variation of this opening question: “Why are you here today?” Connecting with and understanding patients thus requires doctors to listen to what’s called the patient narrative.  The importance of really hearing this narrative is beautifully described by U.K. physician Dr. Jeff Clark, writing in the British Journal of General PracticeBut the problem, as Dr. Clark reminds his peers, is that patients and doctors see the world in very different ways.  He also warns that the stories patients tell their physicians about why they’re seeking medical care may all too often be seen by doctors as merely a time-wasting distraction from “getting to the bottom of things.

The urge to get to the bottom of things may also help to explain what’s known as “The 18-Second Rule”.
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