PREPARED PATIENT BLOG

Patients and experts explore what it takes to find good health care and make the most of it.

Carolyn Thomas is a heart attack survivor and a 2008 graduate of the annual WomenHeart Science and Leadership Symposium at Mayo Clinic in Rochester, Minnesota. She was also named by “Our Bodies Ourselves” of Boston in 2009 as one of 20 inductees from seven countries acknowledged as “Women’s Health Heroes” for community activism in promoting women’s health. This post originally appeared on her Heart Sisters blog. She also writes at The Ethical Nag: Marketing Ethics for the Easily Swayed and you can follow her on Twitter @HeartSisters or @TheEthicalNag.


Is Your Doctor Talking to Your Other Doctors?

Carolyn Thomas | October 28, 2014
We'd all like to believe that the average physician would have some clue about a medical crisis happening within a family she's been caring for during the past three decades. But it ain't necessarily so. If you've ever been discharged from a hospital by one doctor only to later be readmitted to the hospital under a different doctor's care, you may be surprised to learn that those doctors are not likely talking to each other...

A Patient Responds to What 'Experts' Say About Patient Engagement

Carolyn Thomas | July 14, 2014
I was one of the patients interviewed for the recently published 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. My 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 have co-opted the concept of patient engagement for their own purposes...

Caring for the Whole Patient

Carolyn Thomas | May 27, 2014
When I was discharged from the intensive care unit in cardiology, not one of the nurses, residents or cardiologists asked if I'd be able to afford the fistful of expensive new cardiac meds I'd been prescribed. Not one asked if there was anybody at home to help take care of me there, or if there was anybody at home who needed me to take care of them. Not one asked if I'd be returning to a high-stress job, or even if I had enough banked sick time or vacation days to take sufficient time off. Such real-life issues are simply not the concern of most of our health care providers...

'Everybody Has Plans 'Til They Get Punched in the Mouth'

Carolyn Thomas | April 1, 2014
In boxing terms, this is completely literal, sound advice. As a figurative metaphor for illness, it's not bad, either. Because no matter how competent, how smart, how resourceful we may think we are before a catastrophic health crisis strikes, many of us may suddenly feel incompetent, ignorant and helpless when thrust inexplicably into the stress of such formidable reality...

Confessions of a Non-Compliant Patient

Carolyn Thomas | February 24, 2014
Most days, I have learned to function pretty well. But take a few unexpected health challenges, no matter how minor they may seem to others, arriving at the same time and piled onto an already-full plate and you have an explosion of overwhelm that looms larger than the average healthy person could even imagine. I've become a non-compliant patient...

Is Your Doctor Paying Attention?

Carolyn Thomas | February 13, 2014
The $800 bottle of meds in my bathroom cabinet is a powerfully expensive reminder of my (former) family physician's lapse in attention – and my own lapse in catching her error. She'd somehow accidentally doubled both the dosage and the number of times per day to take these meds. How is this even possible? Somebody is not paying attention...

"We Are All Patients." No, You're Not.

Carolyn Thomas | December 19, 2013
I read recently about a medical conference on breast reconstructive surgery following mastectomy, to which not one single Real Live Patient who had actually undergone breast reconstructive surgery following mastectomy was invited to participate...

Medical Jargon: Do You Need a Translator?

Carolyn Thomas | November 14, 2013
A distressingly large number of people who have the letters M.D. after their names answer our health questions in such jargon-heavy ways that it makes our situation even more confusing. Time for a SMOG check – aka the "Simple Measure of Gobbledygook."

Looking for Meaning in a Meaningless Diagnosis

Carolyn Thomas | June 24, 2013
It is indeed tempting – and common – to spout trite platitudes designed to somehow make people feel better about those bad things with bumper-sticker pop-psych. But can platitudes really lend meaning to a life-altering health crisis?

Patient Engagement? How About Doctor Engagement?

Carolyn Thomas | May 28, 2013
It’s a stressful time to be a patient these days, what with expectations running high that we should be both empowered and engaged while self-tracking every trackable health indicator possible – and of course retaining an all-important positive mental attitude – in order to change health care forever.

‘Healthy Privilege’ – When You Just Can’t Imagine Being Sick

Carolyn Thomas | May 6, 2013
What I’ve learned since my heart attack is that, until you or somebody you care about are personally affected by a life-altering diagnosis, it’s almost impossible to really get what being sick every day actually means…

Self-Tracking Tech Revolution? Not So Fast…

Carolyn Thomas | April 8, 2013
When the report called "Tracking for Health" was released last month, media headlines announced: “Over Two-Thirds Track Health Indicators!” Surprisingly, very few headlines ran the real news from the report: “Only 21% Use Technology to Self-Track!” Yet as of last autumn, more than 500 tech companies are busy developing The Next Big Thing in self-tracking tools.

Does Knowing Change Behaving?

Carolyn Thomas | January 17, 2013
One of my blog readers recently told us about why most of those self-tracking health apps may not in fact be particularly useful: "Fundamentally, sick people are the LEAST likely to be self-quantifiers. We, in fact, relish the thought of NOT obsessing about our health, to take it for granted like we do, say, gravity."

When You Fear Being Labeled a “Difficult” Patient

Carolyn Thomas | December 10, 2012
Most patients know what this feels like, so it’s reassuring to learn that academics are actually studying it: our fear of being labeled a “difficult patient”.

Study: '91% discharged from hospital without care plan'

Carolyn Thomas | November 15, 2012
When I was discharged from hospital following my heart attack, I was wheelchaired down to the front door, patted on the head, and waved off with a small pile of brochures and a follow-up appointment in six weeks'?? time.

Guest Blog: 'I Care about You' and Other Things to Say to Sick Friends

Carolyn Thomas | September 14, 2012
In honour of National Invisible Chronic Illness Awareness Week, I think I'll talk about what to say when somebody you care about is ill - rather than the well-meaning (but often annoying) greeting: 'You look great!'

Why You'll Listen to Me but Not to Your Doctor

Carolyn Thomas | May 25, 2012
As I like to remind my women's heart health presentation audiences, I am not a physician. I'm not a nurse. I am merely a dull-witted heart attack survivor. I also warn them that a lot of what I'm about to say to them is already available out there, likely printed on some wrinkled-up Heart and Stroke Foundation brochure stuffed into the magazine rack at their doctor's office.

A Second Opinion from Dr. Google

Carolyn Thomas | April 16, 2012
I've often suspected that if only the E.R. doctor who misdiagnosed me with indigestion had bothered to just Google my cardiac symptoms (chest pain, nausea, sweating and pain radiating down my left arm), he and Dr. Google would have almost immediately hit upon my correct diagnosis.

Guest Blog: When Patients Demand Treatments That Won't Work

Carolyn Thomas | November 4, 2011
When my son Ben came down with a sore throat this past summer, he went to his doctor for antibiotics. Both agreed it sure sounded like strep, so without having to wait for the throat swab test results, Ben left the office with a prescription for antibiotics. But were they the appropriate treatment? Do all bugs need drugs?

Guest Blog: Is It Post-Heart Attack Depression or Just Feeling Sad?

Carolyn Thomas | August 4, 2011
One of the small joys of having launched my site [http://myheartsisters.org/] is discovering by happy accident the wisdom of other writers ' even when they're writing on unrelated topics not remotely connected to my favourite subject which is, of course, women and heart disease. For example, I happened upon a link to Sandra Pawula's lovely blog called Always Well Within. Sandra teaches mindfulness meditation, and she lives in Hawai'i (note her correct spelling).

Say What? Do Patients Really Hear What Doctors Tell Them?

Carolyn Thomas | March 3, 2011
I had a heart attack two years ago and was taken immediately to the O.R. for a stent implantation. Overwhelmed and terrified, I knew nothing of what was about to happen to me. What I learned later was that my stent may help a newly-opened artery to stay open. But a new study now suggests heart patients believe that stents have far greater benefits than they actually do. Should it be up to patients to ensure that doctor-patient communication is accurate or effective during an emotionally overwhelming medical event?