Saturday 19 August 2017

'Nobody ever expected to see my 30th birthday' - Sasha Delaney on life cystic fibrosis

Living life under the constant shadow of cystic fibrosis is a never-ending grapple but Sasha Delaney is determined not to let it stand in her way

Never give up: Sasha Delaney has defied doctors' expectations and says she never felt like the ‘sick girl’ as a child. Photo: Shane O’Neill
Never give up: Sasha Delaney has defied doctors' expectations and says she never felt like the ‘sick girl’ as a child. Photo: Shane O’Neill
Race on: Sasha with the One in 1,000 ambassadors - Róisín O'Donovan and Ann Skelly of Red Rock and (centre) Evanne Ní Chuilinn from RTÉ

For many, birthdays after the age of 25 are not exactly filled with delight. However, for me, turning 30 in 2014 was a day to be celebrated as it was a milestone I was never expected to reach. You see, when I was born, my parents were told that life expectancy for a person with cystic fibrosis (CF) was limited.

When I left hospital as a 16-week-old baby, the medical team had little expectation of me ever coming back to them alive. Fortunately, for me, my parents had other ideas. They followed a very strict regime of feeding, physiotherapy and medications and, much to the doctors' surprise, I began to thrive.

That dogged persistence and determination has stayed with me my whole life, enabling me to never feel like the 'sick girl' of the family but to live as full a life as possible. CF is often thought of as a lung disease. It is in fact a multi-system disease that, in addition to the lungs, involves the liver, pancreas and digestive system, bringing with it many challenges.

As a child, my main issue was with my tummy and digestive system. I have to take enzymes with everything I eat to digest my food and back then, intestinal blockages were a huge problem. I had numerous hospital admissions to have these cleared and, luckily, avoided having major bowel surgery.

Race on: Sasha with the One in 1,000 ambassadors - Róisín O'Donovan and Ann Skelly of Red Rock and (centre) Evanne Ní Chuilinn from RTÉ
Race on: Sasha with the One in 1,000 ambassadors - Róisín O'Donovan and Ann Skelly of Red Rock and (centre) Evanne Ní Chuilinn from RTÉ

It was when I was about five that I was diagnosed with a bacteria in my lungs called pseudomonas, and my lung issues started to become particularly apparent.

I would have serious chest infections and it became routine to have two admissions to hospital a year, for up to three weeks at a time. Daddy would spend his nights sleeping on the floor beside me before getting up and going to work. I managed to keep on top of my schooling as mammy collected homework for me every day.

In our house growing up with CF was never allowed as an excuse for anything.

I was encouraged to join in on sports days, to play outside with friends, and to join in after-school activities. In summer months when, like most children, I didn't want to come in, my parents would do my physio in the front garden with all of my friends wanting a turn.

If I told my parents I wanted to run up a mountain, they would have told me to go for it. That attitude was often met with confusion from other parents who thought that I should be more protected - but that would have inhibited my life.

In junior infants during a sack race, I was so far behind that the school principal himself ran to me, picked me up - sack and all - and whisked me to the finish line.

My outlook never changed and, at the age of eight, I decided to run the 800m race. I was lapped several times. Ten minutes later, I was still running. Everybody else had finished and, with the race effectively over, other parents were telling mammy that I should stop running. Their suggestion was met with a very stubborn 'she started the race, so she will finish it' attitude.

I finished to much cheering, and I had a huge sense of satisfaction for not giving up.

During my teens that outlook was harder to maintain. I became quite sick at the age of 14. The following 10 years would see me in hospital with chest infections more often than I was home.

My Leaving Cert years were quite tough. I missed over half the course.

When it came to the mocks, my body decided it would be the perfect time to make me cough up vast amounts of blood during a maths paper. It was scary, but I went to the bathroom, waited for it to slow down, and calmly went back to the exam hall and finished the paper. A three-week hospital admission followed.

My Leaving Cert arrived and I found myself unable to breathe with horrific pain in one of my lungs. As soon as the last paper was done, it was straight back to hospital. I had sat exams for two weeks with pleurisy.

Despite the painful adventure, I passed all of my exams and got myself a place in university studying English and History. Again, however, illness got in the way and, in spite of trying six times, I never managed to get that final degree.

CF is like a full-time job, which is even harder when you have an actual full-time job. I am lucky that I really do love my job as a teaching assistant. It requires me to be up at 5.50am to get nebulisers, physio, medications and breakfast all covered before I leave the house.

It's like juggling 15 balls at a time. Adulthood has brought me a shiny collection of new problems including diabetes, liver disease, renal problems and coeliac disease. Sometimes, no matter how hard you try, a ball falls.

Fitness has really helped. There is no way that I could maintain my lung function without exercise. I trained as a zumba instructor and now spend my time in the gym.

This year I will be taking part in the VHI women's mini-marathon in June as part of Cystic Fibrosis Ireland's One in 1,000 team and training for that will help keep me well - as soon as I get started, that is!

Sometimes, like a seasoned fighter, I have big battles with CF.

It's not like it has me in a choke-hold; it's more like a never-ending grapple. Sometimes CF has the upper hand, but I never 'tap out' and give up. I always manage to fight back.

My parents never gave up on me. My legacy to them is to never give up either. I have too much living to do.

Sasha Delaney is a patient ambassador for Cystic Fibrosis Ireland's One in 1,000 campaign, which aims to recruit 1,000 women to take part in the VHI Women's mini-marathon on June 5. To sign up for the One in 1,000 Campaign and support Cystic Fibrosis Ireland, LoCall 1890 311 211, email fundraising@cfireland.ie or visit onein1000.ie

Irish Independent

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