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Read Me I have CF but I'm afraid to get sick

As inadequate accommodation for cystic fibrosis patients again hits headlines, one young person with CF tells an emotional tale of hospital life.

LAST WEEK, IT emerged that the plight of cystic fibrosis patients in St Vincent’s Hospital in Dublin continues to be of concern. The Cystic Fibrosis Association of Ireland noted last Tuesday that there were five CF patients waiting for an in-patient room – an absolute must for those with CF who are particularly prone to life-threatening cross-infections.

Despite a much-trumpeted opening of a new wing of the hospital in July – and an agreement that 34 isolated beds would be available for CF patients when needed – the number of appropriate beds available to CF patients is still not in line with this. A report by Dr RM Pollock in 2005 found that conditions for people with CF in Ireland was “seriously inadequate” and warned that placing such patients in unsegregated areas of hospitals created “significant risks of cross-infection with virulent organisms”.

This account by Maria Daly, who has cystic fibrosis, recounts a little of life in a multi-bed room, an all-too-frequent experience for those whose condition requires them to be regularly hospitalised from a young age.

How often are we immersed in complete silence? An absence of sound. Unpolluted waves hitting our eardrums. In this multimedia-centric society, is silence as golden as the number one hit wants us to believe?

In a room in Dublin, I try to sleep. I close my eyes and wish for silence. Alas, it does not come as the sounds of the room continue to envelop me. My headphones fail to keep out the din of the darkened room.

Air rushing through tubing for oxygen or medicine. Call bells ringing. Curtains being pulled. These background noises can be filtered out and I drift off occasionally. It is the shouting that wakes me. A patient uttering random illogical words. Mumbling abruptly turns to roaring then back to mumbling once more.

As I wake, I hear the breakfast trolley rattle. The shouting has been replaced by muffled sobbing. A curtain is drawn around a bed in the middle of the room. I turn on my side and concentrate on the hum of machines, my breath in and out.

Complete silence shrouds me. I feel my wet pillow as I finally have the stillness I desire. Screaming is better than this unearthly quiet. Absence echoed in the wave-free Dublin ward.

This piece is about a woman dying in the bed opposite me. It is an account of one of the worst nights in my life. Something I should have never had to experience as a young adult.

I decided to write it after the opening of the new cystic fibrosis unit, to remind me of what I spent countless hours over five long years fighting for. I hoped I would never have to write another newspaper article or speak on radio about cystic fibrosis again.

This week, adults with cystic fibrosis are once again in shared rooms risking cross infection and prolonged sickness. We predicted that this would happen and the issue was raised with Minister Reilly prior to the opening.

Please let me assign this memory to the archives. I have been afraid to get sick for years and terrified of every cough and splutter while in hospital. I am sick of fighting for this!

Read: Cystic fibrosis group “concerned” that new unit to have 40 per cent fewer beds than hoped>

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