Belfast Telegraph

Wednesday 22 October 2014

We live with cystic fibrosis

Cystic fibrosis (CF) hit the headlines when the shock announcement was made by Chancellor Gordon Brown and wife Sarah that their four-month- old son had been diagnosed with the life-threatening disease.

Affecting the lungs and pancreas, cystic fibrosis clogs organs with a sticky mucus, causing difficulty breathing and digestive problems. Here, three Ulster people living with the condition tell their story. Interviews by Gráinne McCarry and Chrissie Russell.

Ciaran Murphy (20) was diagnosed with cystic fibrosis soon after birth. He now awaits a double lung transplant due to irreparable damage caused by repeatedly battling with severe chest infections and feeds through a peg in his stomach. A part-time student , he lives in Glengormley with mum Deirdre, dad Conrad and sister Claire (22). He says:

CF is the UK's most common inherited disease yet so many people don't even realise that they are carriers. On average three lives are lost each week to CF.

Maybe by the time Fraser is my age, there will be a cure and he will lead a long and healthy life.

There is a lot of ignorance about CF, a lot of people think of someone with a cough or wheezy chest. They don't realise that it affects the digestive system, also. If I don't take my enzyme tablets each time I eat something, my body doesn't absorb the food properly and break it down causing constipation and sometimes blockages.

Each time I contract a chest infection, my lungs get damaged and it's irreparable. They don't really fully recover.

One in 25 people are carriers and they could go through their life not knowing until they have a child that is diagnosed with it.

I spent the first six weeks after birth in hospital with a bad chest infection and because of that had a heel prick test to check for CF. The test came back positive and from then on I was in and out of hospital with infections or for treatment.

Although, I spent most of P3 in hospital with digestive or chest problems, I was able to do everything I wanted and played Gaelic football and hurling all the time. By my first and second year at St Malachy's College, I was getting more and more short of breath and didn't have a lot of energy. I hurled for St Enda's GAC but because I wasn't able to play as much sport I had to give it up - that was one of the hardest parts because I really enjoyed it.

The consequences of CF really hit home a couple of years back when two of my friends which I met in hospital died. They were brother and sister, he was the same age as me and she was the same age as my sister Claire.

I hadn't really thought about the worst case scenario too much before that, I was just getting on with my daily life ... taking each day as it comes. Their deaths ... it made me realise the extent of the disease.

Since the age of 15 or 16 I've been going into hospital every two or three weeks for treatment, my lungs are getting weaker and weaker. So far this year I've been admitted every six weeks. It's hard for my family as each time I go into hospital their whole world is turned upside down.

Claire's my only sister and she's very supportive of me. She wants to do everything in her power to raise the profile of the disease and she does a lot of fundraising work.

In September, she climbed Ben Nevis with five other members of my family and raised £7,300 for the Cystic Fibrosis Trust to help fund new research into finding a cure.

It was an emotional time for them as they did it to help me.

It's really been in the last couple of years that my condition has deteriorated. I completed my A-Levels in hospital, I got a B, C and D which I was really pleased with considering that I didn't feel well at all while I was doing them.

I went on to begin a degree in Irish at the University of Ulster in Coleraine and was living in Portstewart. I missed quite a bit through being sick.

Because of the travelling involved I decided to transfer to the Belfast campus and now I do my degree part-time two days a week. It can get frustrating at times...you just have to get on with it as best you can.

In February I got quite a severe infection, the worst I've ever had, I was in hospital for four weeks and it took everyone by surprise. My consultant had a talk with me and told me it was time to think about getting a double lung transplant. The decision was left up to me.

It was explained to me that a transplant wasn't going to make me live longer, but improve my quality of life. At the minute, a walk that would take my sister a few minutes would take me 10 or 15 minutes if it's flat ground. If it was steep or hilly I wouldn't be able to walk it at all.

I travelled over to the Freeman Hospital in Newcastle earlier this year to find out more information and left the consultation feeling very positive. It depends on your outlook on life and mine has always been very positive.

CF hasn't taken over my life - I wouldn't let it, but I won't do anything that might sacrifice my health.

"I live for the present and don't really think too much about the future.

If I get the transplant and everything goes okay, I hope to finish my degree and become an Irish teacher.

When I was listening to the information about my transplant all I could think about was how great it would be to kick a football again. It would be a new lease of life for me.

Help Ciaran and his family in their fundraising efforts by donating online at www.justgiving.com/ciaransflyers

Claire Taggart (29) lives in Omagh and works part-time as an administration and accounts assistant. She was diagnosed with cystic fibrosis at the age of seven months. Claire has a partner of three and a half years. She says:

Being diagnosed with cystic fibrosis is not the end of the world. If I was to compare my life to someone that doesn't have the illness I would say I've achieved everything I've wanted to do with my life. I've got a job, my own car, I travel regularly and have my boyfriend and brilliant family and friends. Apart from the illness, I don't see much difference.


In my mind, I feel that I'm doing pretty well. It would be a lie to say that I don't think about the life expectancy rate. It's said to be 31 and I'm 29. If I dwelt on it, I would only have two years left to live. I have friends with CF that are well above 31 and they're doing fine.

I think that with all the medical advances that occur, life expectancy will keep increasing.

When I was a child my parents were told that people with CF on average lived until they were 16 so I've actually beaten those odds. The rate has more or less doubled since then - it's just a number to me.

It's all a balancing act really and hasn't stopped me from being who I am. I am Claire Taggart first of all and someone living with CF second of all.

I want to enjoy my life and spend time with my boyfriend, friends, family and nephews and nieces. I want to keep doing this for as long as I possibly can. There's no point lying in my bed thinking, 'Woe is me, I've got cystic fibrosis'. You just have to get on with things and make the best of what you've got.

I was diagnosed with CF when I was seven months old after various tests were carried out. I hadn't been very well since birth and wasn't thriving. I would have had a good understanding of CF at an early age and knew the importance of my physiotherapy and taking my medication.

It was never kept a secret from me. I take vitamins daily and enzyme tablets as I do not digest food or absorb nutrients sufficiently and take a nebuliser twice a day to help keep my airways clear.

There's no history of the disease in my immediate family, my mother and father had three healthy sons before I was born and never knew they were carriers of the CF gene until I was diagnosed.

I've have been in hospital for periods of time, more so when I was younger. I used to go into hospital every three months for intravenous antibiotics and would have had a lot of time off school.

The last time I was in hospital was in January. I was heading off to New Zealand with my boyfriend the following month and needed to get extra treatment to clear out my lungs of any infections and boost my immune system.

My physiotherapy sessions used to take place on a flat bed that was tipped up vertical, tilting you upside down, to clear the mucus from the lungs.

This part of my treatment has been replaced with a little flutter machine; I breathe in and out of it and it sends vibrations down into my lungs to clear them. I use it twice a day and more if I'm feeling unwell.

I work part-time in Omagh as an administration and accounts assistant at the Centra supermarket. When I went for my interview I told the panel there and then that I had CF. I would never hide it from anyone and my employers have been very considerate in allowing me time off for treatment. They are very genuine in their concern and very supportive.

I've been with my partner three and a half years. We were only going out a few months when I ended up in hospital with a chest infection.

I didn't have to tell him in person about my illness because he saw the sign in the hospital lift saying 'Cystic Fibrosis Unit - Ward 8'.

When he came over to my bed I said 'I take it you know' and he said that he'd read about it and we had a bit of a laugh. I hadn't told him before because it was a bit of a deep subject and we'd only started dating.

I'm enjoying the present and don't think too much about the future. I've no plans to get married or have kids.

I haven't factored in having a baby and wouldn't place any emphasis on it, you never know when your going to be in good health or not. Having a baby takes it's toll on new mothers without having CF on top of things.

Life can be full and rewarding, it's up to the individual how they deal with it. Cystic fibrosis is a serious illness and it's not always fun or easy. But, there is no need to think that your life is over.

There is a possibility of a cure in years to come with this new gene therapy. It's still in its infancy and basically identifies the faulty gene in the CF patient and replaces it with a normal one.

There are so many types of treatments available now to prevent lung damage as much as possible and medicine is advancing all the time. Life really is a lottery."

Rab Gardiner (40) is a policeman who lives with his wife Sonya (36), a part-time civil servant, and their children Rebecca (10) and Christopher (9) in Moneyrea. Rebecca has cystic fibrosis. Rab says feelings of devastation pass

When Rebecca was diagnosed with cystic fibrosis, our first thoughts were " How are we going to cope with this? How is Rebecca going to cope with it? Will she grow up as a normal child? How can we protect her and keep her safe? Can we keep her wrapped in bubble wrap?"

But we decided very early on that there was no way we wanted to shelter her from life and instead decided we would try to let her live life in as normal a way as possible. Of course, our emotions go up and down, as with everybody. It's the worst thing to see your child not well. You would rather have it happen to yourself than to them.

When Rebecca was born, we knew there was a chance she would have the illness. There was a history of CF in my wife's family as her brother Gary died from it when he was six so, before Sonya got pregnant, we did tests to see if I was a carrier of the gene. The tests showed I was, which meant that there was a one in four chance of our child being born with CF.

Even so, when Rebecca was given the heel prick test at six days old, we were both devastated when the diagnosis came back positive. For about two days, the news floored us.

Rebecca goes on a nebuliser for 10 to 15 minutes a day. At breakfast she needs to take two different inhalers. She has physiotherapy three times a day to help move blockages in her lungs and she goes on the nebuliser again before going to bed. She is constantly on antibiotics to prevent against infection but, because she might pick up a strange one, we have to change the antibiotics five or six times a year.

To look at her, you wouldn't know anything is wrong with her. She is maybe a little bit pale but not overly thin. If she gets a chest infection then you would know she's not well but usually she looks just like a normal child.

At the start, it was quite difficult for people to know what to say. People come to see a new baby to say congratulations on the birth of your first child but CF is not that well known a condition and it's quite hard for people to understand, especially when the baby looks normal and healthy. But we're very lucky to have a family who are inspired by Rebecca and take her as they find her. Her school has also been incredibly supportive and the other children have always accepted Rebecca.

We live every day fully and one day at a time, with Sonya and I 100% behind Rebecca and whatever she wants to do.

We don't know what's round the corner but, being positive, five years down the line we could have a cure. Lots of scientists are working on it and we're very hopeful.

Her life expectancy is not something we openly talk about. Rebecca is very upbeat and she's never asked us the question "am I going to die young?" It's not that we keep her sheltered. If she has any questions then we'll answer them.

We can't help looking to the future and we have to think about things such as Rebecca's education and the financial considerations of whether she will go to university, or whether she will be fit to work.

Rebecca's illness never put us off having more children. Chris is a year younger than Rebecca and tested clear for CF although we won't know if he's a carrier until later. It's great to have the two of them but, if we hadn't had the CF to think about, we might have had more children, maybe four.

I have been reading the articles about Gordon Brown and I'm sure at the moment he feels devastated but he also sounds as if he's very positive. I'd like him to know that the feeling of devastation only lasts a short while. He'll look around and see other children with CF and how well they are doing. Like all of us, he'll be hoping that a cure is found and, from a Government point of view, there is no man in a better position to help us with the resources for that.

His child will not be any different or loved any less than any child. If anything, he'll be loved more.

Cystic fibrosis facts

Cystic fibrosis is a genetic disease that affects a number of organs in the body, particularly the pancreas and lungs, by coating them with a sticky, thick mucus

One in 25 people in the UK is a carrier of the faulty CF gene

More than 7,500 young people in the UK have the disease

A person diagnosed with CF has inherited a faulty gene from both parents

Even with both parents being carriers, a child has a one in four chance of being born with the disease

Symptoms of CF include a troublesome cough, repeated chest infections, poor weight gain, prolonged diarrhoea and fertility problems

There is no cure at present but an international research team is developing a gene therapy (a way of repairing the faulty gene or replacing it with a normal one)

Go to the website www.cftrust.org.uk for more information

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