Tag: ICD

Dear Carolyn: “Breaking up is hard to do”

~ Carolyn Thomas ~ 4 Comments

by Carolyn Thomas   ♥   @HeartSisters 

Breaking up is hard to do. That’s how my blog reader Tommie O’Sullivan described to me the sad news that she lost first one, and then a second trusted cardiologist. It’s nothing personal. Important family reasons. Retirement. She understands these things. But still. . .

As part of my occasional and ongoing “Dear Carolyn” series of guest posts written by women who have learned firsthand what becoming a heart patient is all about, I’m happy to share this, with her permission. Tommie’s words reminded me that, so far, I’ve been lucky in never experiencing the loss of a favourite physician. I suspect that – in this age of increasingly empowered patients, critical doctor reviews online, and second opinions from Dr. Google – her sentiments are what every physician longs to hear one day from their patients: “I will really miss you!”  Continue reading “Dear Carolyn: “Breaking up is hard to do”” →

Hello pacers! A little Q&A about your pacemaker

~ Carolyn Thomas ~ 158 Comments

by Carolyn Thomas  ♥  @HeartSisters

Here at Heart Sisters World Headquarters, I’m often contacted by readers with impertinent questions like: “Why don’t you ever write about ______?” (insert your own specific diagnosis here). One in particular was a 2015 reader question that read: “Why don’t you ever write about congenital heart defects?” On that particular morning, I was feeling tired, sick and “grumpy” (as our little Everly Rose calls every feeling she has that’s not happy). I wanted to snap back at this reader that I’m not running the Encyclopedia Britannica here. . .

But in a remarkable coincidence – and luckily before I had a chance to snap – on that very day, another reader named Aletha happened to share with me her own amazing story as an adult living with a heart condition she’d had since birth. That weekend, I ran my first ever blog post about this cardiac condition, called “When babies with congenital heart defects grow up“. 

And recently, a similar reader contact reminded me that I’ve never covered the topic of cardiac pacemakers – until now. Continue reading “Hello pacers! A little Q&A about your pacemaker” →

Turning “Why me?” into “Why not me?”

~ Carolyn Thomas ~ 16 Comments

3heartsby Carolyn Thomas  ♥  @HeartSisters

Cathy Aumack-Bandy of Florida wrote this open letter in response to another heart patient’s question to her last month. I’m running this compelling essay here with her kind permission. Hold onto your hats . . .

♥

When first diagnosed with cardiac problems, many people ask, “Who Me? No…” My version of the question “Who me?” was “Why Me?” – until the day my Mom asked, “Why NOT you?”  I hadn’t thought of it that way.

I went into the hospital because of a bout with “asthmatic bronchitis” that I just could not shake. I never imagined it might be a heart problem (neither I guess did my former primary care physician). I’d had a full cardiac work-up in October and been declared “heart healthy.”

Talk about shock… Who knew?

Just two days after my admission, a doctor (I didn’t know him at the time, or that he was a cardiologist) came into my room and, totally ignoring me in the bed, told my husband Gary that my heart was barely functioning and that without a transplant, I would not make three months.  Continue reading “Turning “Why me?” into “Why not me?”” →

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” →

Coping with your partner’s ICD and heart disease

~ Carolyn Thomas ~ 10 Comments

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 younger 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 ICD.  Continue reading “Coping with your partner’s ICD and heart disease” →