Tara

Arrhythmia

Cardiomyopathy

Heart failure

Heart failure at 20 years old

At 20 years old, single-mum Tara was diagnosed with familial dilated cardiomyopathy, causing her heart to function at 30% of its normal capacity. Tara shares her road to recovery and the amazing support she received.

My name is Tara and I am 27 years old.

My journey started in 2010, when I gave birth to my son Jayden. I was really tired for the first year of his life and had little to no energy, but I put it down to being a first-time mum. In 2011, I started to get short of breath and had chest pain so I went to my GP.

They did an electrocardiograph (ECG) and after looking at the result it was sent it through to Hutt Hospital to review. The hospital wanted to see me urgently. Even though my ECG showed an anteroseptal infarct (a type of heart attack), the doctor thought I was going to be ok since I appeared to be a healthy 20-year-old.

A few days later I had an echocardiogram (PDF) and was diagnosed with familial dilated cardiomyopathy. I was in heart failure and my heart was working at around 30% of its normal function. I started taking beta blockers and ACE inhibitor medications and after a few months my heart function improved.  

In 2014, I collapsed when I was home alone with my son. As I was unsure how long I was unconscious for I was admitted to hospital for two days. I had multiple Holter monitor tests (PDF) but nothing was ever found.

I had another collapse in September 2017, was unconscious for seven minutes and once again was admitted to hospital. I was referred to have a Reveal device (loop recorder) inserted and this was done in October 2017.

Less than a week after having this monitoring device inserted, they found I was having life-threatening ventricular tachycardia and would need an implantable cardioverter defibrillator (ICD). After that I wasn't allowed to drive for six months and as a single mum, working full time and living on my own it was difficult. 

In February, I got my subcutaneous ICD. The whole experience was terrifying but I knew it could possibly save my life one day. It has now been four months since my surgery and I still have pain where my ICD is and it's very uncomfortable, but it can take up to a year to fully recover.

I am lucky to have amazing support. I have a fantastic heart failure nurse who has been by my side since day one. The clinical nurse specialists at Wellington Hospital have made my ICD journey a lot easier and have been so supportive. But my biggest supporters have been my family and friends.

My best piece of advice for anyone going through anything similar would be to talk to your family, friends, your nurses and doctors about how you are feeling and any concerns you have. I was in denial after being told I needed an ICD, and the best thing I did was ask for help.

This whole journey has taken its toll on me mentally and I am grateful I had counselling offered to me. Our mental health is as important as our physical health.

Shared June 2018