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Which patients does the “patient voice” represent?

9 Aug

by Carolyn Thomas  ♥  @HeartSisters

There are patients. And then there are patients. 

Let’s consider, for example, two friends of about the same age, same height, same size, same socioeconomic demographic – each one (in an amazingly freakish coincidence) a survivor of a similarly severe heart attack, admitted to the same hospital on the same day. Let’s call these two made-up examples Patient A and Patient B.

Patient A is diagnosed promptly in mid-heart attack, treated appropriately, recovers well, suffers very little if any lasting heart muscle damage, completes a program of supervised cardiac rehabilitation, is surrounded by supportive family and friends, and is happily back at work and hosting Sunday dinners within a few short weeks of recuperation.

Patient B, on the other hand, experiences complications during her hospitalization, recuperation takes far longer than expected, repeat procedures are required, her cardiac symptoms worsen, she suffers longterm debilitating consequences, and is never able to return to work.

Yet despite these profound differences, physicians would still describe both of these women with the same all-inclusive descriptor, “myocardial infarction” (heart attack).  Continue reading

Kindness in health care: missing in action?

14 Jun

by Carolyn Thomas    @HeartSisters

I don’t remember much of what happened during that fateful visit to the Emergency Department.  I remember the on-call cardiologist saying something to me about my “significant heart disease”. After hearing those words, I felt so stunned that – although I could see his lips moving and could hear sounds coming out of his mouth – he may as well have been speaking Swahili.  (Doctors, please remember this in the future when delivering life-altering diagnoses to your patients!)

What I do vividly remember, however, is a small but profound act of kindness later that day when I was brought to my bed in the CCU (the cardiac intensive care unit). Continue reading

When you know more than your doctors about your diagnosis

31 May

by Carolyn Thomas   @HeartSisters

One of my blog readers needlessly suffered debilitating cardiac symptoms for a number of years before she was finally correctly diagnosed (thanks to a second opinion) with coronary microvascular disease (MVD). During those years, she’d read everything she could get her hands on in a desperate effort to solve this mystery. But when she asked her own physician if MVD might be the culprit, he dismissed this diagnostic possibility, adding that he “didn’t believe” in coronary microvascular disease.

Didn’t believe in it?!

Please note, darling readers, that we’re not talking about the Tooth Fairy here.

We’re talking about a woman living with a cardiac condition that’s been well-studied (as in, peer-reviewed studies done by respected heart researchers and published in actual real-life medical journals).

Continue reading

“I’m just not a pill person” – and other annoying excuses

26 Apr

drugs hands

by Carolyn Thomas    @HeartSisters

Dr. Lisa Rosenbaum writes in the New England Journal of Medicine about a friend who is worried about her father since two of his sisters have recently died following strokes.  She asks her friend:

“Is he on aspirin?”

“Oh, heavens, no,” the friend replies. “My parents are totally against taking any medications.”

“But why?”

“They don’t believe in them.”

Curious about what she calls this instinctive non-belief, a commonly observed reluctance to take the medications their physicians recommend (aka non-compliance or the slightly less patronizing non-adherence), Dr. Rosenbaum wanted to understand how patients feel about taking cardiac medications. The consequences of not taking one’s meds can be deadly, yet almost half of all heart patients are famously reluctant to do so.(1)   Dr. Rosenbaum, a cardiologist at Boston’s Brigham and Women’s Hospital, wondered: Are there emotional barriers? Where do they come from? Can we find better ways of increasing medication adherence if we understand these barriers?*

So she interviewed patients who’d had a myocardial infarction (heart attack), both at the time of the initial cardiac event, and again months later.  Their answers fell into five distinct themes that might be surprising to doctors feeling frustrated by their non-compliant patients. Continue reading

Do we need to change the name of cardiac rehab?

8 Mar

by Carolyn Thomas    @HeartSisters

Once discharged from hospital following my heart attack, I was gobsmacked by how physically frail I felt. Simply taking a shower meant a 20-minute lie down to recover. Just walking to the corner with my son, Ben, required me to clutch his arm for support. But it wasn’t only this new weakness that alarmed me. As a former distance runner, I felt suddenly afraid of any exertion that might bring on the horrific heart attack symptoms I’d so recently endured. That’s where cardiac rehabilitation (a 2-4 month supervised exercise and education program for heart patients) literally saved me. Continue reading

“I rang the bell again. No one came.”

22 Feb

by Carolyn Thomas    @HeartSisters

There are a number of big issues that leaped out at me about the hospital story you’re about to read.  Let’s see how many of them you observe, too – and how many could have been prevented.  This story is told by Ann, an Australian heart patient whose cardiac journey began in 2007 when she was 51 years old. But over the years since then, she has continued to suffer debilitating cardiac symptoms almost every day.

Her symptoms include not just chest pain, but pain throughout her upper back, jaw, shoulder, neck or arm, occasionally with severe shortness of breath. Despite taking a fistful of daily heart meds and wearing a nitro patch to help manage pain, Ann is rarely able to sleep through an entire night without being awoken by these symptoms. And here’s why . . .
Continue reading

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