Tag Archives: ICD

What heart patients want ICD makers to know

22 Oct

by Carolyn Thomas  @HeartSisters

One of my Mayo heart sisters was recently invited to speak at a Patient Advocates Forum during the annual AdvaMed 2013 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

Coping with your partner’s ICD and heart disease

1 Apr

by Carolyn Thomas

I could make out the rounded corners of the implanted device stretching through the thin white skin of Ann’s chest. I was shocked to see such a young, healthy-looking woman among our Heart To Heart survivors’ support group that night (we were vastly outnumbered by old men and their wives).  Ann (not her real name) was just 24 years old; her young sister had recently died of sudden cardiac arrest due to a terrifying heart condition called Long QT Syndrome – a heart arrhythmia usually affecting otherwise healthy teenagers and young adults – whose first symptom is sudden loss of consciousness and, in far too many cases, death.

Because there is often a family connection, all of the surviving siblings in Ann’s family had to be tested to see if they too shared this deadly diagnosis. Her brother was fine, but Ann tested positive for Long QT, and so was immediately implanted with a life-saving cardiac device called an ICDContinue reading

Do you know the difference between a pacemaker and an implantable defibrillator?

16 Jul

by Carolyn Thomas  @HeartSisters

Before surviving a heart attack, I knew virtually nothing about pacemakers (they were just something that old people have to get, right?) and absolutely nothing about the cardiac device called implantable cardioverter defibrillators, or ICDs. 

In fact, the first time I laid eyes on a person with an ICD was at my 7-week Heart To Heart cardiac support group after I was discharged from hospital. 

One of the people in my group was a lovely, athletic 24-year old woman who had been diagnosed with a rare and serious heart arrhythmia called Long QT Syndrome.* Her sister had recently died suddenly due to the same condition.

Continue reading

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