Survivor Survey – Diagnosis

Q: What was your diagnosis?

What were you told that was the cause of your SCA?

Responses with name, age at SCA and time since

Currently undergoing genetic screening, but for now (and possibly forever) it is idiopathic ventricular fibrillation.

Clare,  31, Almost 5 months.

Still not diagnosed. Tests still ongoing. I am waiting to see if I can continue in my job as a lone worker.

Lisa,  35, 4 months

I have an ICD and have been diagnosed with Long QT Sydrome

Natasha,  25, 4.5 years

Idiopathic but essentially ‘ventricular tachycardia’

Anon,  36, 11 years


Robyn,  57, 18 months

Idiopathic SCA

Tracy,  50, 3 years

PEA SCA Extensive lung damage from extended artificial ventilation. Severe memory loss from length of time of sca. Both have had huge effect on everyday life.

Kym,  40, 3 years

Diet change and less stress

Stewart,  53, 3 years

Heart attack due to Lesions. LAD & LCx

Mark,  56, 14 months

Cardiomyopathy originally and then, after the SCA, arrhythmias were spotted.ICD inserted. Two appropriate shocks later and two corresponding driving bans have slowed me down. Full-time work isn’t possible either. So, a major shift in living style, but it’s manageable.

Andy,  51, 5 years

Heart attack

Dawn,  48, 3 years

Not known

Joanne,  48, 23 months

Inherited cardiomyopathy

Michelle,  43, 5 years

I was diagnosed with Long QT Syndrome, things have changed but I subbornly try not to change too much now

Judy,  39, 3 years

Still ongoing

Joe,  52, 4 weeks

Heart valve replacement followed by SCA

Maureen,  68, 7 years

Originally they thought heart block gr 2 but have changed it sick sinus node. Also have chronotrophic incompetence.

Anon,  56, 15 months

I have a Congenital heart defect. DORV trsnspostion, Pulmanary stenosis and VSD.

Amy,  17, 14 years

Degenerative heart failure, COPD, aphasia, and many other complications after 40 mins CPR.

Brenden,  56, 4 years


Amy,  30, 2 years and 8 months

DCM & LBBB and my life is pretty much the same although I am more aware of what I eat and drink.

Lynne,  47, 21 months

Idiopathic cardiomyopathy

Graeme,  36, 10 years

No diagnosis

Lee,  37, 5 1/2 years

Life previously was very much around work and not enjoying the things around me. I’m very much a believer in too much work and no play makes Ben have a SCA!!!

Ben,  32, 1 year 2 months

My life really hasn’t changed at all. I wasn’t diagnosed with anything so I love my life like I normally would.

Imogen,  21, 2 years

Coronary Artery Disease – blockage to LAD and CX – 5 stents fitted . Life has changed -positive life changes , more active , more aware of health style and healthy eating. Negative- More anxious about doing things and for the future. Loss of confidence, panic attacks. Sad for loss of previous more carefree life. Live for today attitude.

Michelle,  50, 1 year

Ventricular fibrillation caused by failing mitral valve. The paramedics finally got a heartbeat after working on me for half an hour. I arrested 3 more times in the ambulance. Didn’t regain consciousness until the following day. Very lucky!

Mark,  46, 23 years


Carly,  34, 1 month