Monday 23 April 2018

'I didn't think I would make it home alive' - woman (26) living with cystic fibrosis

Having a chronic, life-long condition has taught Ashe Spillane the importance of living in the present. She tells Joy Orpen that is why she is encouraging others not to put their dreams on the long finger

Ashe Spillane is living with cystic fibrosis.
Ashe Spillane is living with cystic fibrosis.

Ashe Spillane (26) had an incredibly happy childhood growing up in the heart of Kerry. "We lived in Tonevane, a really beautiful place about 15 minutes from Tralee," she explains. "My grandmother, five aunts and uncles, and all their kids, still live in the vicinity. We're in and out of each other's houses all the time."

As a schoolgirl, Ashe was keen on athletics and basketball. She did so well in the 100m sprint, 100m hurdles and 400m relay, she ended up with two Munster medals. And she would have got to the All-Ireland finals, if it hadn't been for a fall at the last hurdle, during the provincial qualifier.

"That's my clumsy side showing up," she laughs. That she could compete in athletics at all is testimony to her parents, who always encouraged her to lead an active, healthy and fully inclusive life, even though she was coping with cystic fibrosis (CF).

Ashe inherited the condition from her parents, who are both carriers of a mutated gene which causes CF. This results in the secretion of abnormally thick mucus in the lungs and digestive tract. This can lead to serious chest infections and digestion issues. Ashe's brother David has the condition too, while Niall, their other sibling, does not.

Ashe spent the early part of her life in hospital, where nurses struggled to access her tiny veins. But once she'd had a port inserted in her chest, they were able to pump crucial medications into her body. After that, she thrived; so much so, that when she was two, the port was removed.

Ashe was then able to fully enjoy living in an idyllic rural setting. "I loved mucking around in the farmyard," she says. "My brother and I had about a hundred chickens and ducks, and we used to sell their eggs. I was also big into gallivanting around the mountains. I was a real tomboy."

It's hard to reconcile the image of Ashe as a fearless tree climber, or egg collector covered in mud, with the fact that she was voted Best Dressed Young Racer at Listowel Racing Festival in 2016. Photographs taken at the time portray a young woman who is confident, poised and elegantly dressed. That's not so surprising, given that fashion and beauty are very much part of who Ashe has become over the years.

Following school, she studied journalism and media. "During my first year at college, I began to have health problems and that disrupted my studies," she explains. So she decided to go fruit picking in Australia, and loved it. An added bonus was the warm, dry climate, which helped lessen the effects of CF.

A year later, Ashe came back to Ireland for a short visit. But the tragic death of a much-loved family member, the wedding of another, and her own deteriorating health caused her to remain at home.

"I was on antibiotics a lot, but even so, there wasn't much improvement. Then I started on Kalydeco, which was the first drug to treat the underlying causes of CF rather than just the symptoms. It works for about one-tenth of the CF population, and gave me a whole new lease of life," Ashe says.

She then decided to study make-up artistry. "I've always been creative," she volunteers. "I did a lot of arts and crafts as a kid." While she can turn her hand to most things relating to clothes, she has a definite flair for creating lovely headpieces. "I make them out of faux flowers, netting, rhinestones, whatever takes my fancy," she explains.

She is also brilliant at make-up artistry and can turn a beautiful face (such as her own) into something you'd expect to see in the latest sci-fi blockbuster. Following that college course, Ashe finally returned to Australia, where she went on to win a substantial travel prize in a special-effects make-up competition.

Referring to her need to be always on the go, she says: "Because I've had so many episodes of being sick, I've always had a sense of urgency about getting things done. CF makes you realise the importance of living life fully. So when I went back to Australia, I travelled to New Zealand and Asia."

Before she went to Thailand, Ashe was thoroughly checked at the local CF clinic in Sydney. They recorded her lung function at 82pc, and she was also vaccinated against various illnesses. She had a wonderful holiday, but soon after her return to Sydney, she became desperately ill with a chest infection.

"Niall, whose apartment I was sharing, can sleep through most things," she explains. "But one night I was coughing so much, he woke up. When he came to my bedroom and saw bloodied tissues all over the place, he took me straight to hospital."

By then, her lung function had plummeted to 28pc. "I have never felt so sick in my entire life," she says. "I didn't think I would make it home alive. I couldn't even walk from the kitchen to my bedroom without gasping for air. It was terrifying. The first two weeks in hospital, I was completely out of it."

Ashe says the medical team in Sydney was in constant contact with her own CF team at Cork University Hospital, who had looked after her since she became eligible for adult services. "Because I was just back from Thailand, they threw the book at me. I was on IV machines 24 hours a day, being given three antibiotics, two antivirals and fluids. Their only goal was to get me home," she says.

But just two days before she was due to leave Australia, Ashe cancelled her flight. "The Great Barrier Reef had always been the number-one item on my bucket list," she explains. "So, thanks to my travel prize, I had five wonderful, memorable days there, before I headed home."

However, back in Ireland, there was a price to pay when her lung function dropped to 30pc, and she ended up back in hospital. However, once she'd recovered, she got a part-time job at the BareMinerals counter in Debenhams in Tralee. She has also started her own Instagram blog, (@allaboutashe) which has approximately 4,000 followers.

Her message to young people is this: "Live life to the full, be grateful for every day and don't waste time on negativity. I'm into positivity empowerment."

Currently, Ashe is in the throes of a 65-themed challenge to raise funds for Cystic Fibrosis Ireland on 65 Roses Day, which takes place this year on April 13. Her goal is to get her lung function up to 65pc, using diet and exercise, within 65 days. Friends and family are sponsoring her.

Support 65 Roses Day by organising your own fundraising challenges, or buy a purple rose for €2 on Friday, April 13, see 65RosesDay.ie

Sunday Independent

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