Category: Living with heart disease

posts here focus on the “new normal” you’ll discover once you get home from hospital and the reality starts to sink in

When we don’t look as sick as we feel

~ Carolyn Thomas ~ 44 Comments

by Carolyn Thomas  ♥ @HeartSisters

One morning during the last century, I overheard two of my hospital 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, could they?  Continue reading “When we don’t look as sick as we feel” →

The day I made peace with an errant organ

~ Carolyn Thomas ~ 27 Comments

by Carolyn Thomas    ♥  @HeartSisters

Here’s my theory: few health crises in life are as traumatic as surviving a cardiac event. I developed this theory while I was busy having my own heart attack in the spring of 2008.

For starters, cardiac symptoms often come out of the blue (in fact, almost two-thirds of women who die of coronary heart disease have no previous symptoms.(1)  Having a heart attack can feel so unimaginably terrifying that almost all of us try desperately to dismiss or deny cardiac symptoms. And according to a report published in Global Heart, the journal of the World Heart Federation, women are twice as likely to die within one year even if they do survive a heart attack compared to our male counterparts.(2)

So if – and each of these is still, sadly, a great big fat IF for too many women – we survive the actual cardiac event, and if we are near a hospital that’s able to provide an experienced team of cardiologists/cardiovascular surgeons/cardiac nurses, and if we are correctly diagnosed, and if we receive timely and appropriate treatment, and if the resulting damage to our oxygen-deprived heart muscle is not too severe, we get to finally go home, safe and sound.

And that’s where the real trauma starts.   Continue reading “The day I made peace with an errant organ” →

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

~ Carolyn Thomas ~ 18 Comments

FinalBrain-1400

by Carolyn Thomas   ♥  Heart Sisters (on Blue Sky)

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 “We know we should do ____, but instead we do ____” →

Patient engagement (as described by 31 non-patients)

~ Carolyn Thomas ~ 13 Comments

by Carolyn Thomas  ♥ @HeartSisters

I was one of the four patients interviewed for the Center for Advancing Health 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 wrote here, 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 once again 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, health plan administrators, vendors, community health leaders, government organizations,  health care contractors and consultants.
 Continue reading “Patient engagement (as described by 31 non-patients)” →