Living with Cystic Fibrosis

Hucknall Rotary Club’s major project this year is raising £ 7,500 towards purchase 2 ultrasonic nebulisers and a Treadmill Tunturi T Track T90 which will be located in the new Cystic Fibrosis Unit being built at  City Hospital, Nottingham.  Several fund-raising events have already been held including a Charity Golf Day and particiticpation in a sponsored Dragonboat Race.  Mr John McClue captained the Hucknall Rotary Club Dragon boat team and was our invited speaker at our meeting on Tuesday 5^th February 2013.

John is married with two daughters:  Katie (aged 14) and Ellie (aged 8).  Within a week of Ellie being born, John and his wife were given news which was completely devastating and changed their lives forever.  Ellie had been born with Cystic Fibrosis.  John spoke very movingly of the impact that this had on the whole family’s life. 

Cystic Fibrosis (C.F.) is the UK's most common life-threatening inherited disease and the average age of survival is just 41 years.  People can carry the mutated cystic fibrosis gene without realising it.  If both partners in a couple are carriers of this gene, they are at risk of having a baby with cystic fibrosis. The chance that such a couple will have an affected child is 1 in 4.

John spoke of how his daughter Ellie needed constant daily treatment which included physiotherapy to unclog her lungs from thick, sticky mucus.  John had to administer this and failure to do this would lead to breathing and digestive problems.  Ellie also had to take medication prior to eating.  If Ellie did not take her tablets, she could not eat because the only way the food could be digested was with the aid of her medication.   John said he ‘could never take his eyes off the ball’ as everything had to be watched closely because immediate action was required. Failure to do so could have serious consequences.

Cross-infection is an issue of considerable concern for the CF community. Those with CF attract different bacteria or 'bugs' that grow in their lungs. These 'bugs' are rarely harmful to those who do not have CF but may be harmful to others who have CF but who do not have the same 'bugs'.    This makes it extremely difficult to organise CF self-support groups because of the fear of cross-infection.

The new CF unit at City Hospital, Nottingham is addressing this by building rooms  with Skype access etc, so that people using the facility can communicate with other users while they are there.

I was extremely moved by John’s honesty, openness and thanked him for his thought-provoking and heart-rendering presentation.