When babies with congenital heart defects grow up

17 May

by Carolyn Thomas    @HeartSisters

hands-105455_1280In 2005, it was estimated that for the first time in history, there are now more adults than children living with childhood heart defects. That sounds like good news to me, because it means that due to major advances in medicine over the past few decades, more than 90% of babies born with congenital heart disease are now surviving into adulthood. What it also means, however, is that as these babies grow up, they need continued and careful monitoring as heart patients.

One such baby was Aletha, one of my blog readers in South Dakota, now 36 years of age. Her parents, she says, realized soon after she was born that their newborn daughter had a problem. Pediatric cardiologists diagnosed baby Aletha with a heart condition called Bicuspid Aortic Valve Disease (BAVD).  Continue reading

Do you fear change? Then don’t have a heart attack

10 May

by Carolyn Thomas   @HeartSisters

For the freshly-diagnosed heart patient, the immediate and sudden change from “being well” to “recovering” cuts directly to the core of self-concept and self-esteem, according to Dr. Wayne Sotile. He offers a surprisingly familiar list of seven sudden changes commonly observed after a cardiac event. When thinking back on the new reality of my own early post-heart attack days, I was able to tick off his list, point by point. If this had been a midterm exam, in fact, I’d score a perfect 7/7.  On his list of seven stressors that newbies often face, how many ring true for you, too? Continue reading

“It’s a girl!!”

7 May

Welcome to the world, my darling little grandbaby!  Everly Rose, born at 7:07 p.m. on May 7th, 2015 (which would have been my own mother’s 87th birthday!)  Proud parents are Larissa and Randy – Mum and babe doing “FANTASTIC!”, says the new Daddy. 

Let the spoiling begin!

Everly Rose

Everly Rose napping with her Mum

♥  ♥  ♥  ♥  ♥ 

Q: Any words of grandmotherly advice for me?

“It’s not your heart. It’s just _____” (insert misdiagnosis)

3 May

by Carolyn Thomas    @HeartSisters

It’s fair to say that you would not be reading these words had my heart attack not been misdiagnosed with a cheerful “You are in the right demographic for acid reflux!”  Had I been correctly diagnosed, admitted and appropriately treated during that first trip to the Emergency Department, I would likely never have started this blog in 2009. Nor would I be still writing years later about female heart patients being misdiagnosed in mid-heart attack.

We know that women continue to be under-diagnosed – and then under-treated even when appropriately diagnosed – compared to men presenting with cardiac symptoms.  In fact, as reported in the New England Journal of Medicine, female heart patients in their 50s and younger are seven times more likely to be misdiagnosed than our male counterparts.(1)

Here’s my latest round of true tales from women whose cardiovascular disease is still being missed:    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

Slow-onset heart attack: the trickster that fools us

19 Apr

snail

by Carolyn Thomas    @HeartSisters

As I’ve noted here previously, there were a number of very good reasons that I believed that Emergency Department physician who sent me home with an acid reflux misdiagnosis. Despite my textbook heart attack symptoms of central chest pain, nausea, sweating and pain down my left arm, these reasons included:

1.  He had the letters M.D. after his name;

2.  He misdiagnosed me in a decisively authoritative manner;

3.  I wanted to believe him because I’d much rather have indigestion than heart disease, thank you very much;

4.  The Emergency nurse scolded me privately about my questions to this doctor, warning me: “He is a very good doctor, and he does not like to be questioned!”  (The questions I’d been asking included, not surprisingly: “But Doctor, what about this pain down my left arm?”);

5.  Most of all, what I had always imagined a heart attack looking like (clutching one’s chest in agony, falling down unconscious, 911, ambulance, sirens, CPR) was not at all what I was experiencing. Instead, despite my alarming symptoms, I was still able to walk, talk, think and generally behave like a normally functioning person, i.e. one who is definitely NOT having a heart attack!*

So it all made sense to me as I was being sent home from Emergency that day, feeling very embarrassed because I had clearly been making a big fuss over nothing.

My experience, however, might have been what researchers in Ireland refer to as “slow-onset myocardial infarction”.   Continue reading

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