What women need to know about pregnancy complications and heart disease

27 Jul

 by Carolyn Thomas     @HeartSisters

“I’d love to speak about the patient’s perspective at your Toronto conference in June,” I said last winter in response to an invitation from Dr. Graeme Smith, a Canadian obstetrician who teaches at Queen’s University in Kingston and specializes in high-risk pregnancies. “But travelling halfway across the country is just too hard on me these days.”

As the unofficial poster child for the well-documented link between pregnancy complications and premature cardiovascular disease, I was already very familiar with Dr. Smith’s work.  See also: Pregnancy complications strongly linked to heart disease”

Shortly after I turned down his kind invitation to speak, he invited me again (hey, he’s persistent!) – but this time he offered the irresistible option of speaking to the Toronto audience via teleconference. I asked him:

“Does this mean I can stay in my jammies, drink coffee at my kitchen table, and just speak to your group over the phone?!”

Continue reading

We know we should do ____, but instead we do ____

20 Jul

FinalBrain-1400

by Carolyn Thomas  @HeartSisters

I read this on the side of a Starbucks coffee cup. Seriously. It was written by Harvard psychologist Dr. Daniel Gilbert, who said:

“The fact that we can make disastrous decisions even as we foresee their consequences is the great unsolved mystery of human behaviour.

“When you hold your fate in your hands, why would you ever make a fist?”

Why, indeed?  Sometimes I think of Daniel Gilbert’s words when I make decisions of varying levels of potential disaster even when I know perfectly well that I will most definitely NOT like the consequences of doing so.  Continue reading

“Us” vs “them”: the under-served patient speaks up

13 Jul

by Carolyn Thomas  @HeartSisters

I asked permission to republish this letter written by an American friend who’s living with both multiple health issues and poverty.  She has asked to remain anonymous. I’m grateful for her contribution to an important discussion, as she offers a unique patient perspective in this letter to the organizers of a well-known academic conference on healthcare.

“Dear conference organizers:

“Your upcoming healthcare conference forum on under-served populations brings up a concern for me that I hope you will consider in the next few months.  The best way I can explain my concern is through this example:   Continue reading

Patient engagement as described by 31 non-patients

6 Jul

by Carolyn Thomas  @HeartSisters

I was one of the patients interviewed for the recently published Center for Advancing Health 2014 report called Here to Stay: What Health Care Leaders Say About Patient Engagement. It’s an interesting, illuminating and frustrating document to read. 

The late Dr. Jessie Gruman, president and founder of the CFAH, wrote in her forward to this report:

“What are people talking about when they say ‘patient engagement’ anyway?  That phrase encompasses so many concepts and ideas that it’s become meaningless.”

As I said here in 2012, my own concern (as a person who’s pretty darned engaged in my own health care) is not that the phrase is meaningless. It’s more that non-patients, business and industry have co-opted the concept of patient engagement for their own purposes.

And consider also that, even in this impressive 170-page CFAH document that is all about patient engagement, there were only four patients interviewed – compared to 31 clinicians, employers/purchaser representatives, community health leaders, government organizations, health plans, vendors, health care contractors and consultants.
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Who will take care of you at home if you’re seriously ill?

6 Jul

by Carolyn Thomas     @HeartSisters

It turns out that the hilarious British spoof on the horrors of the Man-Cold might be more true than we ever imagined. The joke reality here is that when a husband gets sick, his wife is naturally expected to become his doting caregiver, but when a wife gets sick, she may feel distinctly on her own.

A study presented last month at the annual meeting of the Population Association of America actually reported that the risk of divorce among married couples rises when the wife – but not the husband — becomes seriously ill.

Study author Dr. Amelia Karraker, a researcher at the University of Michigan Institute for Social Research, examined how the onset of four serious illnesses – cancer, heart disease, lung disease and stroke – affected the marriages of couples over a 20-year period. Dr. Karraker explained:

“We found that women are doubly vulnerable to marital dissolution in the face of serious illness.

“They are more likely to be widowed, and if they are the ones who become ill, they are more likely to get divorced.”

Why is this?    Continue reading

Are you a victim or a survivor?

29 Jun

by Carolyn Thomas  @HeartSisters

sssIn Dr. Wayne Sotile’s very useful book for all freshly-diagnosed heart patients called Thriving With Heart Disease, he nails the description of what he calls the patient’s homecoming blues.  It’s that need to adjust from being cared for 24/7 in hospital following a cardiac event to suddenly being booted out the door and sent back home. For example:

“You’re now home from the hospital, and you’re expected to surf a bewildering wave of emotions, anxieties and procedures.

“Moving very slowly, bouts of depression, weeping, social withdrawal or obsessive anxiety about dying – these are all normal during the early stages of heart disease.”

Normal or not, I found “obsessive anxiety about dying” to be an extremely unpleasant way to live in the days following my own heart attack.  Continue reading

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