Nic

Cardiomyopathy

‘Life is precious’

Nic's life was thrown into turmoil when she was diagnosed with breast cancer in 2005. During treatment it was discovered she also has hypertrophic cardiomyopathy – a condition which runs in her family.

Originally from Ireland, Nic, now 45, came to New Zealand when she was 23 to explore the country and work as a scuba diving instructor. She met and married a Kiwi man and had two children, Conor and Kenzie.

In 2005, it was discovered that Nic had breast cancer and her daughter Kenzie had an Ewing's sarcoma at the top of her spine.

"Kenzie was diagnosed in April and I was diagnosed in the July." Nic explains. "My marriage broke down and life was just completely thrown into turmoil. Life is unpredictable, you just don't know what is going to happen. So that was the start of my journey with the health service and with serious health conditions."

Unfortunately, Kenzie passed away at the end of 2005 at the age of three. It changed the family's life forever.

"I still had a son to look after and I wanted to give him a good life. I didn't want this to ruin his childhood and ultimately ruin his adulthood. For myself I turned to my sport as a way of coping. I always liked solitary sport, like my scuba diving, because it was meditative. When you're under the water you're not talking to anybody, it's wonderful. That really helped me cope and deal with losing Kenzie, and also as a way of coping to get through the treatment protocols that I was under."

Living with hypertrophic cardiomyopathy

Hypertrophic cardiomyopathy runs in Nic's family, but it wasn't discovered in her until her heart function was tested as part of the treatment for her cancer. Her heart function was stable, so she was monitored every two years by a cardiologist at North Shore Hospital.

"Through my 30's my heart function was fine, and I continued to do adventure races and triathlons, marathons, rafting trips and hiking trips, you know, just embracing life really and also raising Conor and doing wonderful activities with him."

In 2013, while training for an Ironman event in Wanaka, Nic noticed that she was struggling a bit on uphill runs and bike rides but didn’t think anything of it.

"I just thought, big girl's blouse, it's all in your mind. So I ignored the symptoms that were staring me straight in the face. On race day itself I still didn't feel that I was up for doing this big event and I had a panic attack pretty much and couldn't do the swim."

Two months later Nic visited her cardiologist for her normal check-up, which revealed her heart function had dropped by 10%. This signaled the need to start medicating with beta blockers and ace inhibitors. It also meant it was time to slow down.

"That was quite a severe blow to me because it robbed me of what I had used throughout my whole adult life as a main coping mechanism, as an enjoyment, as a quality of life thing and finding balance, which was my sport. So, it was really quite a tough thing to come to terms with."

Moving on with life

Nic has never been one to let what life throws at her get her down.

"I don't tend to hold a pity party for myself for terribly long or be a 'Debbie downer'. It was like, this is what it is."

She started using an electric bike instead of her usual push bike, cut back on the ocean swims and began walking the dog instead of running the dog.

"I also came to terms with the fact that I didn't have to say, 'well I wish I had done all these things that I had planned to do', because I had actually done a lot of them. I dived nearly a thousand dives – most of them here in New Zealand. I rafted six of the big rivers, mountain biked the North and South Island, and some of the big trails. I'd done the Milford Track. There was more that I wanted to do but alas, that can't happen.

"But again, I think well, now I'm in my mid-forties and reality is I'd be slowing down anyhow. It's an excuse to get helicopter rides as opposed to doing the hard yards! I have adapted my life, but I haven’t stopped doing sport and exercise, it's just been tapered – a lot!"

Nic's heart function is held at 41% and she is working with her cardiologist to manage her symptoms and medication. Nic's father, who also had hypertrophic cardiomyopathy, needed an ICD as a result of his illness and Nic is aware that she may need one too in the future, but will address that need when it is necessary.

Inspiration and advice

Nic's inspiration in life is her daughter, Kenzie.

"What's always kept me going is my daughter. My three-year-old child was diagnosed with a progressive illness and subsequently died. She didn't get to live a life – I do, and I think as tough as life is – it is very precious and I’m not being flippant about it.

"Life isn't designed to be easy, but I think you've got to look at the moments in life that do bring you pure joy because that's what makes it worth living."

Nic's advice for others is that, "it's OK for it all to be about you and what brings you joy. It can be simply reading a book or watching your Netflix show. You've got to find something that will bring you joy and help you cope with it and not turn to maladaptive coping mechanisms which don't help."

"It's looking after yourself, having a good diet, exercising when you can and maintaining a good body weight. I think that's something we all struggle with as we get older. It's making sure your body can function as well as it can even with the impairments. We can't leave it all to the cardiologists, there's got to be some sense of personal responsibility."

Watch Nic's Tedx Talk about her experience with illness, grief and moving forward with life.

Shared October 2019