What’s it like living with a condition where every breath is difficult - and every day is a fight to stay alive?
Breathless: Living with Cystic Fibrosis, a new BBC ALBA documentary, follows the lives of four individuals living with cystic fibrosis (CF).
Taking a breath is something most of us do without thinking. But for some people this simple act can be crippling. Cystic Fibrosis is an inherited condition caused by a faulty gene that causes mucus to gather in the lungs. Around one in 25 people carry the faulty gene and each week five babies in the UK are born with Cystic Fibrosis.
At one time, people with CF were not expected to live beyond the age of five but with new treatments life expectancy has greatly improved. But there is still no cure for Cystic Fibrosis and while the treatments have become more effective they remain, for those with the condition and their family and friends, both physically and emotionally demanding. This documentary looks at what it’s like “living” with this deadly condition.
Rowan MacLeod, aged 9, from the Isle of Lewis was born with CF but remains a is a typical tree-climbing, bike-riding, fun-loving boy. Working with his parents Rowan uses many of the innovative modern techniques to try and shift the abnormally thick mucus that blocks his lungs and airways. He has to use oxygen and a specialised inhaler every morning before he even goes to school, and has had an IV line fitted to deliver antibiotics directly into his bloodstream. But as Rowan says: “If I don’t do all this stuff, I’ll die.”
It’s yet another serious infection that takes 21-year-old student Hannah McDiarmid from the Isle of Skye to Raigmore Hospital in Inverness for life saving treatment. A student at Sabhal Mòr Ostaig on Skye, Hannah used to live on campus, but her increasing infections mean she now has to study alone from home. Hannah has missed out on the social side of being a 21-year old. Her Mum says: “I’d like Hannah to go out with her friends, have some fun, maybe even go to a festival. Just for her to have some independence. To have a normal life…. as far as is possible.”
Both Hannah and Rowan have to be kept in total isolation every time they are in hospital as they could pick up an infection from another patient or visitor.
The dilemma for their families is how to balance the intrusive medical procedures which impact on their child’s life day after day with the desire to encourage their child to have fun and live life to the full. Particularly as they know that their child’s life will be cut short.
Sheena Swanson, who lives on Islay, has defied the odds by living to 46. She still does the old fashioned patting technique that was common in treating CF in the 1970s but it’s getting ever harder. “I used to be able to walk double, three times what I can do now. It’s a bit down heartening but it’s a good life I have. Just rotten lungs.” Sheena has managed to continue to sing, despite her condition, but she is aware that her lung capacity is shrinking and her physical strength is diminishing.
In Alloa, Lisa Hertwig’s future is less certain. Due to her Cystic Fibrosis Lisa’s lungs have deteriorated so badly that her only hope now is to have a double lung transplant. On two previous occasions, Lisa, 26, has been called by the hospital only for the transplant to be cancelled at the last moment. One in three patients die while on the waiting list. Lisa said: “It’s like if someone had to run five flights of stairs, that’s like what it’s like just for me to walk from one room to the next. I know that my life’s short and I know that the lung transplant is the only option that I’ve got but I just try and stay really positive. I feel myself deteriorating all the time.”
Breathless: Living with Cystic Fibrosis, produced by Matchlight for BBC ALBA, will be shown on Tuesday 20th September at 9pm. It will be repeated on Sunday 25th September at 9.00pm and will also be available on BBC iPlayer.