Heart stops – long QT syndrome

At the age of 27 Shona was diagnosed with long QT syndrome, a condition that can cause abnormal heart rhythms. She has been fitted with an implantable defibrillator to help keep her heart beating normally. This is Shona’s story in her words.

My first event occurred in June 2003, while sitting in a work meeting in our Christchurch office. I woke up on the floor, surrounded by colleagues explaining I had fainted. I had never fainted before, so was very confused.

They took me to Christchurch A&E where they did some basic testing for epilepsy. I requested an electrocardiograph (ECG) be done as my father had a history of heart disease and had recently been lucky enough to be added to the heart transplant list. They were reluctant but I explained my reasons and they did one, and it was considered OK. They put my fainting down to a one-off epileptic seizure.

Almost a year later, I was back in Balclutha where I had been living for the past few years working as a Compliance Manager. I had had a long stressful day at work, gone home to quickly get changed before being picked up for a local quiz night the town was having. That is the last thing I remember.

Defibrillator gets a work-out

I have been told that during the quiz, I just put my head down on the desk and didn’t wake up. I was so fortunate I was there. Because it was a town event, there were a lot of first aiders, doctors etc. that could help me. I believe once the ambulance arrived I was defibrillated 12 times before being taken to Balclutha Hospital to be stabilised enough to be helicoptered to Dunedin.

Once in Dunedin, I was in intensive care for a few hours while they kept trying to stabilise my heart. Doctors did not know what was wrong with me, whether it was a stroke, heart or what, as there was also a lot of brain activity. At this point, my parents told them of my ‘event’ in Christchurch a year earlier, so doctors started doing ECGs and referred back to the Christchurch ECG and thought I may possibly have long QT Syndrome.

Once I was stabilised in Dunedin, I was put into an induced coma and kept very cool for three days. When I was brought out of the coma, I was kept in intensive care for a day to observe my brain function. I was then moved to the Cardiac High Dependency Unit (HDU) while a bed became available in Christchurch to have a defibrillator implanted. 

My memory, although hazy, starts again in the Dunedin HDU. I remember waking up, seeing family and friends, talking to them, falling asleep, then waking up and repeating myself again over and over. This drove my family crazy. I also remember being totally overwhelmed, scared and upset when I was told what had happened.

There are no words to describe how incredibly lucky I am and what my family and friends went through. Having the defib inserted was day surgery, and I have a small scar under my clavicle.

Living with a defibrillator

I have now had my defibrillator for 13 years. It was replaced due to the battery running low after six years. I have been lucky enough that it has never ‘gone off’, but I’m also on beta blockers so hopefully it never will. I live in Canterbury now, and have six monthly check-ups at the hospital. In between check-ups, I have a ‘box’ under my bed that downloads the data from my defib wirelessly while I sleep. It sends any alerts to the defib technicians at the hospital who ring me if something is wrong – usually, to tell me it is unplugged. I can also send manual readings to the technicians if I think something is wrong and they can tell me straight away if something is amiss.

I’m now 40, married with two children and I can honestly say that long QT syndrome or my defib have not stopped me from doing anything. I have travelled to the UK, Europe and Thailand and will give anything a go. My cardiologist has even said I can skydive if I don’t make a habit of it.

The biggest uncertainty has been having my first child. I was lucky enough to have a midwife who also referred me to public obstetricians, so I was heavily monitored throughout my pregnancy and labour, which in the end was completely natural birth. The same happened with my second child.

My children are now in the system and having ECGs six-monthly to check they don’t have it. I was insistent they have ECGs before leaving the hospital so I could sleep at night, but systems have improved and they are now checked regularly. 

 

Shared November 2017

Please note: the views and opinions of the storyteller and related comments may not necessarily reflect those of the Heart Foundation NZ.

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