New life with new lungs
This time last year Damien Bell couldn’t walk from his bedroom to the kitchen — now he can climb up Mount Maunganui.
His new lease on life is all thanks to a lung transplant one year ago.
The Te Awamutu man was born with cystic fibrosis (CF), the most common, life-threatening genetic disorder in New Zealand. He’s one of New Zealand’s 500 people who are celebrated this week for Cystic Fibrosis Awareness Week.
Throughout his life Damien has battled with clogged lungs, shortness of breath, a chronic cough and repeated chest infections.
As a child and into adulthood he had twice-daily chest physiotherapy to help clear his lungs of excess mucus.
The average life expectancy for people with CF is 35 years.
At 34, Damien is creeping towards that number. But thanks to his transplant, he expects to exceed this.
The disease has claimed several of his CF friends, some at a young age.
“As you get older, your body starts to deteriorate slowly and your lung function starts to decline,” he says.
Two years ago Damien was at his worst. He was wheelchair-bound and on oxygen 24/7.
“I couldn’t even walk to the kitchen,” he says. “I would get out of bed and sit in a chair for most of the day. I had no energy to eat.”
That year Damien and his wife Alice had their daughter Zoey, now two. She was born via IVF and does not have CF but is a carrier.
“Zoey has been my motivator,” Damien says. “She has kept me going.”
This time last year Damien received the life-changing news that he would get a lung transplant. The transplant was successful and was followed by a long and slow recovery.
As time goes on it is possible that Damien’s body will reject the new lungs, however the immunosuppressant drugs he now takes will help prevent this. This week he’ll have his one-year checkup in Auckland.
He still has his old lungs at home which he likens to “well-cooked steak”.
Damien’s wife of six years Alice says organ donation is a strange emotional conflict.
“We wanted to be so excited but were so sad knowing a family had just lost someone — and we were benefiting.”
This week Damien will write a letter to the family of the person who donated their lungs.
He’s thankful for his new lungs — which he says on average last about seven and a half years.
But he also knows other lung recipients that live for a further 12-plus years post-transplant.
Damien is also grateful for blood donors. During and following his surgery he received more than 200 units of blood products.
“Organ and blood donation is an amazing gift. Everyone should think about becoming a donor, and let their family know their wishes” he says.
“The transplant made a huge difference. There are no limitations now.”
People with CF can often be directionless because they know they won’t live a long life, he says.
Damien, however, refuses to think like this and is studying towards a Bachelor of IT at Wintec.
“I wouldn’t have imagined doing that a year ago,” he says.
“But I can do anything I want to now.”
CF Awareness Week ran from August 14 to 20 and sought awareness and support through donations and volunteers.
Alice says there is no cure for CF. “We rely on research and science to develop new treatments and medications to help maintain good health and lung function, and ultimately increase life expectancy.
“It takes a lot of funding to be able to achieve this.”
■ To donate visit www.cfnz.org.nz or email treasurer.cfwaikato@gmail.com