A breath of fresh air

An online hub created by cystic fibrosis patients for cystic fibrosis patients is giving young people a new lease on life.

In the early 80’s, 20-year old Paul McKean might have expected to live for another five years, tops.

As a child with cystic fibrosis (CF) Paul would need to go into hospital 2-3 times a year; in his thirties this increased to 2-4 times a year.

What is cystic fibrosis?

Cystic Fibrosis (CF) primarily affects the lungs and digestive system because of a malfunction in the exocrine system that’s responsible for producing saliva, sweat, tears and mucus. There is currently no cure.
Cystic Fibrosis Queensland

When he was a child Paul remembers that he’d often share the ward with up to six other child CF patients. “We all became good mates and friends,” he recalls. “We had some great laughs and got to know each other pretty well.”

What’s known now but wasn’t then, is that CF carries a high risk of cross infection.

Shared danger

The lungs of CF Patients carry and attract different forms of antibiotic-resistant bacteria that non-CF patients don’t. Chronic lung infection contributes to lung disease and damage. It’s the primary cause of early death for people with CF.

By the mid 90’s, Paul and CF patients like him were receiving treatment in segregated wards and adhering to strict guidelines to protect them from the risk.  The guidelines included keeping a one metre distance from other CF patients when inside, not sharing rooms, car rides, medical equipment or cutlery, along with multiple other measures that prevent contagious diseases from spreading.  

The big ‘C’

Even so, by 2010 Paul’s health was in decline.  

His lungs, pancreas, liver and digestive system were failing and it took all he could to walk 300 metres before collapsing. Paul found that he had to give up fulltime work to concentrate on keeping well and continue daily treatment. Paul underwent five to six hours of daily physical therapy and spent ten to 20 days every three weeks in a hospital ward.

To cap it all, Paul was diagnosed with cancer on the cusp of undergoing a double lung transplant. Necessarily, the transplant was put on hold while Paul received intensive treatment.

While his wife, Janine worked full-time as a teacher, Paul cared for their two young children, Oscar (who turned ten in June) and Kate (now seven), completed his Certificate 4 in Web Design and Management, and worked part-time at a local golf course, a sport he’s passionate about.

Paul needed to be clear of cancer for five years, before undergoing the transplant procedure and in May 2016; Paul was finally the proud owners of a new set of lungs.  

”Post-transplant has been amazing. I’ve achieved so much despite some ups and downs. Everyone’s post-transplant is different. I’ve been able to be a more active dad and husband, attend so many more activities with the family and stay away from hospital for the most part. I’ve been able to set goals for the future and look forward to achieving those goals. Without my donor and the decision his/her family made, this would not have been possible.” says Paul of the post-transplant experience.

A place to call their own

An active member  of Cystic Fibrosis Qld with passion and experience in ‘all-things-web’, Paul went on to work with other members to create 'The CF Hub’. The Hub is a closed, online community for CF patients aged 16 years and over that was funded by the LUCRF Super Community Program.

Research shows that users of online health-based communities get significant benefits like emotional support, motivation and advice*.

“While CF Queensland has its own Facebook page, and it’s an excellent platform for information and ideas, the ‘Hub’ is primarily targeted to young adults with CF,” Paul explains.  “It’s their own space to meet up with friends. A place they can call their own and demonstrate to younger people with CF that they can have a normal life.”

The work’s been invaluable in helping patients manoeuvre through the psychological challenges of isolation and social disconnection. It’s also helped build the compassion and camaraderie that can occur when people share the same hardships and experience.

Bright future

Before his transplant, Paul was receiving five to six hours of treatment every day and struggling to walk more than a few hundred metres.

At 46, Paul was able to ride 25 kilometres with other Transplant Australia Cycling Club members in a charity ride for the Prince Charles Hospital Foundation in March this year.

Paul and three other Transplant Club members, who also completed the ride, had a combined total of 46 years post-transplant between them.

It’s a figure that leaves Paul feeling optimistic about the future.

“For the first time in history,” he says “there are more adults with CF older than 18 years, than there are kids with CF! It’s an incredible thing.”

Paul has asked that we include details of where you can go to find out about being an organ donor and we are more than happy to share the Australian Government’s Donate Life website.

LUCRF Super thanks Paul for sharing his story with us and wishes him and his family the very best for the future.

Paul story from The CF Hub

* Lauren B. Solberg, JD, MTS, ‘The Benefits of Online Health Communities’, AMA Journal of Ethics, vol 16, no.4, 2014, pp270-274.