Surgery and Devices – Louise

 

Louise turns to Facebook for help with her ICD.

Written testimony

I got 2 letters in January 2021 that my ICD was on alert. From the manufacturer and from Alberta Health. They said that whoever had this particular ICD could have a problem with the battery. And I’m like ‘holy smokes. I never knew there was a battery in this thing!’  At my next interrogation of the device, the technician also told me that one of my leads hadn’t been giving information since September of 2019. So over a year, it wasn’t giving the right information? ‘Well that sounded kind of not good!’.

I didn’t have a lot of knowledge about my device, and I wasn’t getting information from my doctors. And so I went to Facebook and accidentally found a heart failure group and an ICD group last spring. I started learning more online from real people with ICDs. I read about fractured leads. I read about alarms that could go off. I read about people getting shocked by their ICD. I’m like ‘oh boy, I don’t know what you’re talking about’. And I learned that being shocked is not a happy event. And then I wondered ‘when might I get shocked?’ 

The ICD Clinic people had told me that they’d be checking my ICD every three months now because of the battery alert and the impedance. That’s when I really started to pay attention to my device. I started getting a copy of the written reports every single time they checked it, both in person and by remote transmission. I went on a steep learning curve, and my family doctor came along for the ride.

And I wondered, ‘do I ever meet my electrophysiologist? Like ever?’ Maybe I should be talking to the ICD doctor because I seem to have a few pretty major problems here’.

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