What heart patients want ICD makers to know

~ Carolyn Thomas ~ 48 Comments

by Carolyn Thomas  ♥ @HeartSisters

dont-forget-about-me-4225379_1280 One of my Mayo Clinic heart sisters was recently invited to speak at a Patient Advocates Forum during the annual AdvaMed conference in Washington, DC – billed as “the premiere annual conference of the medical technology industry”.  This industry includes companies that manufacture cardiac devices like pacemakers and ICDs (Implantable Cardioverter Defibrillators).

So she did what all of us lucky ‘Mayo grads’ are easily able to do: she contacted other graduates of the annual WomenHeart Science and Leadership Symposium for Women With Heart Disease at Mayo Clinic. What, she asked us, would patients want her to say to these 1,000+ delegates from device companies (and the physicians who care for heart patients) attending this conference? She wanted other patient perspectives on what it’s like living with a metal device implanted inside your chest, what they worried about, and what could be done better. Here is a sampling of the responses – so listen up, titans of the medical device industry and all those who implant these devices into our bodies:   Continue reading “What heart patients want ICD makers to know” →

The weirdness of Post-Heart Attack Stun

~ Carolyn Thomas ~ 39 Comments

by Carolyn Thomas  ♥ @HeartSisters

Jodi JacksonI‘m laughing right out loud as I type this post, although I am the last person you’d think would ever laugh at another person’s heart attack story.  Usually. . .  But I love Jodi Jackson’s concept of “Post-Heart Attack Stun” – and I just had to laugh at her delicious examples of this concept at work, both during and after her heart attack at age 42.

Although I didn’t realize until I read about Jodi that there was even an official name for this cardiology concept, I sure knew what she was talking about.   

Post-Heart Attack Stun is what Jodi calls the period following a heart attack where everything seems so surreal that you really don’t absorb what has just happened.    Continue reading “The weirdness of Post-Heart Attack Stun” →

A NOT-To-Do List for the chronically ill

~ Carolyn Thomas ~ 25 Comments

Today’s guest post comes from the wisdom of Toni Bernhard, a former law professor who, one fine day many years ago, went to Paris for a holiday with her husband, got sick, and didn’t ever get better. As such, Toni’s had to learn a lot about being a patient, as she described in her wonderful award-winning book, How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers. 

In this guest post, Toni lists items that belong on a NOT-To-Do list for all those living with chronic pain or illness.

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I love To-Do lists. I depended on them when I was working outside the home. I’ve depended on them since my bed became my office. The one difference is that, pre-illness, I had fancy notepads and appointment books in which to keep my lists. Now I scribble them on any random piece of paper I can find.

A few weeks ago, I realized I could benefit from a NOT-To-Do list that would remind me of my limitations – limitations I often ignore either because I’m in denial or because I want to please others.  Continue reading “A NOT-To-Do List for the chronically ill” →

Medical jargon: do you need a translator?

~ Carolyn Thomas ~ 22 Comments

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by Carolyn Thomas  ♥ @HeartSisters

I just love this. Which is to say I don’t love it at all – you need to imagine the snark in my voice if I were actually saying that out loud to you. What I don’t love at all is this example of a real life physician (a cardiac surgeon in Indiana) who is answering a patient’s online question on the website called HealthTap (a site that appears at first blush to be about medical Q&A, but is actually more like a matchmaking service between doctor-shopping patients and the doctors who want to woo them).  Continue reading “Medical jargon: do you need a translator?” →