Susan

Cardiomyopathy

The difference a pacemaker makes

When breathing got more and more difficult for Susan, specialists considered whether she needed a heart transplant or if a different pacemaker could be the answer.

Susan already had a pacemaker when her breathing started to trouble her again.

That pacemaker had served her for four years, after breathing problems first reared their head in 2004.

Back then, she’d first noticed something was wrong when climbing a few stairs would leave her breathless and needing to sit down. But as she’d always suffered from hayfever, Susan assumed the symptoms were allergy-related, and “did nothing about it”.

It was only when a house guest, who happened to be a cardiac nurse, suggested Susan see a doctor that she made an appointment. “Still I hadn’t clicked it was anything to do with my heart,” says Susan.

“I took myself off to the doctor and didn’t see my own doctor which might have also been a good thing, because I think sometimes when you see someone who doesn’t know you so well they perhaps have to look at you a bit more deeply.”

The doctor quickly referred her to Whangārei Hospital, where Susan found herself in the A&E ward. Still not sure what was wrong, she recalls saying to a nurse, “I think I’m a hoax, I shouldn’t really be here.” But the nurse took one look at her and said, “Believe you me, you’re not a hoax, you’re right where you need to be.”

Susan was diagnosed with dilated cardiomyopathy – her heart wasn’t beating properly. That was the start of several days in hospital, before travelling to Auckland for treatment. That’s when she had a pacemaker put in, with two leads connected to her heart...

Four years later…

A few years down the track, Susan’s breathing became laboured again.

“I was finding that I had a couple of times when I woke up in the night thinking that if I didn’t tell myself to breathe I wasn’t going to breathe – a very unpleasant experience.”

Susan went to see a doctor who referred her for a treadmill test. “It just so happened that the day I went in for the test was also the day that the specialist visited Kaitaia Hospital,” she says.

“First of all when the nurse was doing the pre-checks, she said ‘I don’t think the doctor’s going to let you walk on the treadmill’.” Then once the doctor arrived and began the test, “I think I took one, maybe two steps on the treadmill and I was told to get off.”

That was the start of more deliberations over Susan’s treatment and another trip to Auckland Hospital. It turns out that her pacemaker was no longer keeping up with her heart condition. When she first got her pacemaker, her heart was still making some effort to pump by itself, but its ability to do that was diminishing.

“Specialists were considering whether I needed to be on the heart transplant list or whether they would try a different type of pacemaker – very scary,” says Susan.

“They decided to put in a different pacemaker,” she says. And this one had three leads to the heart.

The result has been “a different bill of health” she says. “My heart’s condition has improved considerably.”

‘Life’s pretty good’

“I now have much more energy, I walk at a better pace and I’m feeling much better,” says Susan.

She’s walked the Hollyford Track, she travels, and believes that “life is pretty good”.

That second pacemaker has since been replaced, she says, “but that was because its battery was running down.”

She has her pacemaker checked every three months and takes her heart medication “religiously”.

Apart from the security checks at airports, which have become much simpler as airport officials have become more familiar with the technology, living with a pacemaker has caused her no issues. For Susan, it’s all about the upside.

“I’ve just been for a pacemaker check this morning and I seem to have passed that. I mean you never know, do you, how long you’ve got, but it’s given me 12 more years than I thought I was going to have and so I’m making the most of it.” 

Shared November 2016