Living with Cystic Fibrosis: Chloe's story

Just like most girls her age, 17 year old Chloe McReynolds leads a busy life. When she isn’t hard at work in school, she enjoys socializing and relaxing with her friends. But unlike most girls her age, Chloe has Cystic Fibrosis and must also take time to manage her condition. She does this with the help of specialist staff at the Royal Belfast Hospital for Sick Children.
Chloe tells her story.


Although most people get diagnosed with Cystic Fibrosis (CF) when they are babies, I was about three when I got diagnosed. CF can affect people in lots of different ways – some people can get lots of chest infections, others have symptoms similar to asthma, and it can also affect your digestive system. I’m pretty lucky that mine is not too bad and I can do a lot at home to control it.

But I still travel regularly up from home in Maghera for treatment at the Children’s Hospital. I have been doing that since I was three. Over the years I’ve had to spend longer periods of time in the hospital, but at the moment I come up every month for three days at a time.

All the staff at the hospital are fantastic. Many of them have treated me since I was a child, so I’ve got to know them really well. The nurses in particular are more like friends – I can talk to them about everything -they are interested in me and my life, not just my illness.

As I’ve got older, I’ve learned to control my condition by doing more at home, though it can sometimes be difficult to plan my day around taking medication and doing my physiotherapy. But mostly I try to forget about my illness and not let it rule my life. I can still do lots of things everyone else does – I just passed my driving test, which gives me loads of independence, and my school formal is next week, which I’m really looking forward to. Sometimes though, it’s tough going...I can go through a bad spell when I get really tired and feel down because I can’t do all the same things as my friends.

The next few years are going to be full of changes for me. I turn 18 so will be transferred to Belfast City Hospital where the adult CF clinics are. I have so many friends here at Children’s, I’ll be sad to leave, but everyone is working hard to make my move to Belfast City Hospital as easy as possible. I am already meeting the staff from the adult CF team on a monthly basis. This will allow me to get to know everyone before my treatment begins, and also let the staff get to know me and my condition.

I’m also thinking about going to university in Scotland when I finish school. It would be a major move, so I need to start thinking about it now, looking at how I could manage my condition away from home and finding a Scottish hospital that can provide the ongoing treatment I need.

It’s exciting, and a bit scary, to plan new stuff - but it’s reassuring to know that I have the support and advise of the staff here at the Children’s Hospital and in Belfast City Hospital to help me move into this new stage of life.


Casenotes

Cystic Fibrosis (CF) is one of the UK's most common life-threatening inherited diseases, affecting over 8,500 people in the UK. It affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food.


CF Specialists in the Belfast Trust

The RBHSC Cystic Fibrosis (CF) unit is the regional centre for the care of all children with CF in Northern Ireland. There are currently about 180 patients (aged 1 month to 18 years) attending the clinic.
Recent advances in the treatment and management of CF have resulted in better health and quality of life for children and young people with CF.

The aim of this service is to help the children and their families manage CF so that they can have as normal a home and school life as possible and transfer to the Adult CF service as healthy adults who can lead fulfilling and rewarding lives. Read more about this service

The Adult Cystic Fibrosis (CF) unit is a regional service based at Belfast City Hospital, inpatient beds are based on level 8 of the Tower Block. There are currently have 257 patients. As patients get older we appreciate they have more responsibilities such as college, university, full time employment & their own families. Therefore in order to support patients when they require treatment they can be taught how to reconstitute & administer their IV antibiotics at home. When appropriate hospital admissions can also be planned around college/work commitments.