Case study: Mary Hand (23) from Dingle in Co Kerry has been on the list for a double lung transplant since last May.
Despite a gruelling schedule of three physiotherapy and nebuliser sessions a day, a cocktail of drugs and prolonged spells in hospital, Mary has a very sunny outlook and says her lot has been easier than other cystic fibrosis sufferers.
Diagnosed with cystic fibrosis when she was six months old, she has always known about her condition and has been able to speak openly about it.
In the past year Mary's health suffered a rapid deterioration.
She was spending more time in hospital with infections and had to give up her job as a florist last May.
What were once annual or bi-annual trips to Cork University Hospital for IV antibiotic treatments have become almost fortnightly events.
"I am much more isolated than I used to be. I was always an outgoing person and was always on the go. Now I'm stuck at home all the time."
A trip out can be a big ordeal. She can walk only short distances so a wheelchair may be needed and she must bring her oxygen with her.
Last year Mary was put on the transplant waiting list.
"For the first month you think it will happen and as the months go on it gets harder and harder," she says.
"I spend time promoting organ donor awareness. It keeps me busy."
Given that Ireland has the highest rate of cystic fibrosis, Mary believes we should be leading the way in services.
The unit she attends in Cork has over 200 patients and only one clinical nurse. There is no dedicated cystic fibrosis area so patients are treated in a general ward. Single rooms are not always available and cross-infection is a big concern for her.
"If someone sneezes half a mile down the road I'll pick it up no matter how well I am," she says.