Saturday 20 October 2018

'Apart from a persistent cough, I had been thriving' - Irish woman who got late diagnosis for cystic fibrosis

Diagnosed with the chronic lung disease cystic fibrosis at the age of five, Lydia Cooper has endured some terrifying medical situations. But now she's taking part in the VHI Mini Marathon to raise money for others living with the condition

Lydia Cooper plans to complete the Vhi Mini Marathon with her dogs Penny and Cleo next month. Photo: Tony Gavin
Lydia Cooper plans to complete the Vhi Mini Marathon with her dogs Penny and Cleo next month. Photo: Tony Gavin

I was diagnosed with cystic fibrosis (CF) at the age of five, which is unusually late for people with this condition.

Apart from a persistent cough - which was initially thought to be asthma - I had been thriving.

So naturally, my parents were devastated when they got the news. Back in 1997, children suffering from the chronic disease were not expected to survive past early childhood.

I was immediately put on various medications and my cough improved dramatically. My parents made sure I wasn't treated any differently to the other kids, and I was sent out every day on my bike with my friends, I was put into swimming lessons, and I was very active.

We were told CF would cause me to have numerous hospital admissions and hours spent on nebulisers and physiotherapy, as well as issues with digestion.

But I was the opposite. I loved my food, I was one of the tallest in my class, and I was out every day playing.

Apart from the very odd cough and cold, I didn't quite understand why I had to take all these nebulisers and tablets because I didn't feel sick.

It was sometimes a battle with me to take my medications, I just wanted to be out playing!

I remember from an early age being told I had "65 roses" - that's child-speak for the words "cystic fibrosis", which doesn't exactly trip off the tongue.

The first sign that my condition might be deterioriating came in 2008. I was exhausted. My poor mam had to drag me out of the bed in the mornings and I was coming home from school sick most days.

Just before my Junior Cert, I was admitted to hospital. After a while, things improved very slightly and I was sent home.

My Junior Cert was that week so I sat it in a room by myself with a teacher. I remember my breathing was so bad and the pages were blurry. I barely made it through the exams before being admitted to hospital again.

I was in hospital every three to four weeks from then until November. That's when things took a turn for the worse and I was admitted back to Tallaght Hospital.

There was something about this infection that was different. I could barely walk and needed a wheelchair. My body felt like it was shutting down. My lung function declined rapidly from well over 80pc to just 24pc. I got a sharp stabbing pain in my right lung and knew something was wrong.

I had a collapsed lung. I was told I needed surgery straight away to insert a chest drain. I was petrified as I had never been so sick. I was placed in intensive care and when I counted, I had 15 wires coming out of my body.

I was X-rayed every day and when the lung was re-inflated three days later, I had my chest drain removed.

The next morning, I couldn't breathe. I tried telling my mam but I couldn't get the words out. I started turning blue and mam ran out screaming for a doctor. My lung had collapsed again but was deflating rapidly which was pushing my other lung, heart and oesophagus against my chest wall and was suffocating me.

Within seconds there were seven doctors around my bed. I needed a decompression immediately, which is a needle through your ribs into your pleural cavity to have the air sucked out. I was rushed back to surgery for another chest drain. I was sedated and when I woke up a day or so later, the commotion was over.

Still, after all that, the lung failed to re-inflate. I was transferred to the Mater Hospital where they tried other interventions, but to no avail. It also didn't help that my window overlooked the room where people were laid out.

Finally, the team decided to place a new type of chest drain in the front of my chest which would allow me to be mobile rather than bed-bound as I had been for nearly eight weeks.

Back again to Tallaght Hospital and I had shrunk from 10 stone to 5.5 stone. I was dangerously malnourished. From then onwards, I've had to take digestive enzymes every time I eat to help digest my food and absorb nutrients.

Four months, three chest drains, and numerous rounds of intravenous antibiotics later, I was allowed home. I was too sick to return to school so I decided to take fourth year off and return in fifth year.

But this never happened as my health was still in a sharp decline. I studied hard at home and was determined to sit my Leaving Cert but, the week of the exams, I became very ill and was too sick to sit it, even in hospital.

Now 19, I had no Leaving Cert and was still in and out of hospital. I had lost touch with many friends.

I felt very alone and left behind. I struggled mentally for a couple of years as my health had beaten me down. I wasn't the social butterfly I was a few years previously.

I decided I wanted to go to college, but without the Leaving Cert it would be slightly more tricky. I found a course in nutrition, did an interview and got accepted. I was over the moon.

I loved college, it gave me back my independence and I continued to do my intravenous antibiotics in my car at lunchtime.

It was in class I met Stephen. He was funny and went out of his way to make me feel included. It was a whirlwind romance. He'd help me with my antibiotics and learned how to administer them safely.

Three months later we moved in together, much to my parents' concern, as up until then they had wrapped me up in cotton wool and were finding it hard with me suddenly fleeing the nest. However, they loved Stephen and were really happy for me.

Stephen left the course and decided to follow in the family trade and trained as a welder. While setting up our home gym, he manufactured some gym equipment as we couldn't find anything suitable online. We immediately spotted a gap in the market and toyed with the idea of setting up our own company.

Six years to the day that I had emergency surgery, Stephen and I got married. It was the happiest day of my life. Stephen and I were determined to create a life around our obstacles and soon after we set up our own gym gear company called GRIP.

That was three years ago and we are now one of the leading commercial gym equipment manufacturers in the country.

Running my own business means I am able to work from home when I'm unwell or if I need to go into hospital.

Stephen has worked so hard to create the products and I look after all the sales and marketing. We couldn't be prouder.

On June 3, I plan on walking the Vhi Women's Mini Marathon as part of Cystic Fibrosis Ireland's One in 1,000 campaign, which is about getting 1,000 women to raise funds for the charity.

Given my history of bad health, even walking the route will be a huge achievement.

● To sign up to fundraise for Cystic Fibrosis Ireland's One in 1,000 campaign, visit onein1000.ie

What is cystic fibrosis

* Cystic fibrosis (CF) is an inherited chronic disease that primarily affects the lungs and digestive system of about 1,300 children and adults in the Ireland (70,000 worldwide). π A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

- clogs the lungs and leads to life-threatening lung infections;

- obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

* People with CF can have a variety of symptoms, including:

- very salty-tasting skin

- persistent coughing, at times with phlegm;

- frequent lung infections;

- wheezing or shortness of breath;

- poor growth/weight gain in spite of a good appetite; - frequent greasy, bulky stools or difficulty in bowel movements.

* About 25 new cases of cystic fibrosis in Ireland are diagnosed each year. Because of newborn screening, most babies with CF should now be diagnosed quickly.

* CF Ireland (CFI) is a voluntary organisation that was set up by parents in 1963 to improve the treatment and facilities for CF sufferers. See cfireland.ie

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