Alan’s life with CF — I feared I’d never see 40

ALAN Kelly’s school days were not the best days of his life.

Now every day is a good day for the 44-year-old.

“School was pretty challenging because I had cystic fibrosis (CF),” explains Alan, from Cloughduv.

He and his twin brother, Barry, were both born in 1975 with the disease, which required lots of medical treatments in hospital and physiotherapy throughout their lives.

The condition is an inherited chronic disease that affects primarily the lungs and the digestive tract.

“We missed a lot of our school days,” says Alan.

“They were challenging times for us. But we did the best that we could.

“If Barry or I got an infection; then the other automatically got it,” adds Alan.

“A simple cold would cause infection and it meant two weeks in hospital in isolation.”

The brothers took comfort from each other during the hard times.

“We always knew what the other was going through,” says Alan.

“Cystic fibrosis was a huge part of our lives. We suffered from regular infections, the build-up of mucus causing bugs.

“We were on antibiotics very often, sometimes given intravenously in the hospital.

“The CF clinic in St Finbarr’s Hospital was very familiar to us. We went there every three months for chest clearance physio and medications.

“Our other three brothers were lucky not to have contracted CF.”

Back in the mid-1970s, attitudes to the disease in Ireland — which has the highest incidence of CF in the world — were different.

“Back then, cystic fibrosis was thought of as a childhood illness and many children didn’t make it to adulthood,” says Alan.

“Nowadays the medications, diet and techniques for treating cystic fibrosis have progressed enormously.

“The designated CF clinic facility in CUH has five en-suite isolation rooms to examine, monitor and assess patients.”

Sadly, Barry passed away 20 years ago, in 1999, in his mid-twenties, but Alan got a new lease of life when he underwent a double lung transplant in 2013.

"I didn’t think I’d live to see 40,” says Alan, who was told by his doctor to get his affairs in order in February, 2002, when his health had deteriorated alarmingly.

“When I was 37, I was very sick and I was going downhill very quickly,” recalls Alan, who works as an office administrator.

“I was working four days a week and I was on oxygen 24 hours a day.

“Caroline, my wife, was my rock, she was my carer.”

Things came to a head when Barry was put on the transplant list.

“I was put on the transplant list for a double lung transplant. It was a case of last chance saloon.”

Alan often felt wiped out by the disease attacking his respiratory system.

“I could only put my feet up at home. Mentally and physically, CF took its toll on me.

“It was easy to get depressed as your mind races, thinking, ‘What can I do?’”

Alan did get a slight reprieve from the disease.

“Fortunately, I got access to a new tablet, called Kalydeco, on compassionate grounds. At least it kept me out of hospital and infection- free.”

Dr James Reilly, when he was Minister for Health, made Kalydeco available for CF patients in Ireland from March, 2013.

Then the life-saving call for Alan’s transplant operation came on September 20 that year.

“I was still on oxygen and getting physio,” says Alan.

“It was hectic when we got the call to go to the Mater in Dublin.

“At Newlands Cross, the ambulance ran out of fuel and we got a garda escort to the hospital!”

How did Alan feel, now that his life might not only be changed for the better, but ultimately be saved too?

“I was very calm,” says Alan.

“I think I was relatively fit and healthy, playing pitch ’n’ putt whenever I was able.

“You need to be in a fit state heading in for a double lung transplant operation.”

It was an eight-hour procedure — and it was a success.

“I was 12 months recuperating,” says Alan. “There was a lot of muscle waste and my legs were tired.”

But Alan, spurred on by a once-in-a-lifetime chance to live a normal, healthy life, was determined to get himself up and running.

And he had a 40th birthday to look forward to.

Alan smiles.

“I took on a tough rehabilitation programme to build myself back up,” he says.

He owed that to himself — and to his donor.

“I was determined to give it my all to respect my donor, who I felt was looking down on me,” says Alan.

“I wanted my donor to be proud of me. I wanted them to say as they looked down on me every day, ‘You’ve done well today’. I wanted my transplant to be worthwhile.”

His efforts proved very worthwhile.

“I bought an exercise bike and I used the treadmill to get stronger,” says Alan.

“I walked every day and even tried running a bit!”

He also revisited his first love.

“I got out on the pitch ’n’ putt pitch every chance I got.”

The game has a special place in his heart.

“Caroline and her dad were members of a different pitch ’n’ putt club to me,” says Alan.

“Then they joined my club. Caroline and I became friends. Then we tied the knot!

“She always knew that I had CF. Caroline said she was friends with me, not with CF.”

CF not only affects an individual’s life, but also the lives of those around them.

“The disease affected everyone,” says Alan. “My wife, my family, my friends. My work-mates were very supportive always.”

There was no stopping him after the transplant. Instead of going downhill he was going uphill.

“I climbed Croagh Patrick for my 40th birthday! It was a very emotional day,” says Alan.

“I got to the top! I have 80% lung capacity now. Before I only had 10% lung capacity.”

He’s never completely out of the woods.

“I take 50 to 60 tablets a day,” says Alan.

“They are anti-rejection drugs, anti-biotics and immune suppressants.

“I will always have to take the meds. I have to be careful of picking up germs in case of infection.”

There are not many restrictions holding Alan back now.

“I watch my diet. Rare meat and runny eggs are off the menu!”

He and Caroline savour life, with a renewed appetite for living it to the full.

“Caroline and I live an active life. We never say, ‘Why us’?”

The couple are a team.

“It was our journey, our donor and our transplant,” says Alan.

“We are so grateful to the doctors, the nurses, and our donor.

“I wrote to the donor on the first anniversary of my double lung transplant to thank them,” adds Alan.

These days, there ain’t no mountain high enough for Alan and Caroline to scale. They are high on life and renewed vigour.

“The future is bright for us,” says Alan.

“I aim to be the best husband to the most supportive, wonderful wife anybody could have.”

JOIN THE QUEST TO RAISE €120,000 for CF

Ireland's annual 65 Roses Day for Cystic Fibrosis, takes place on Friday, April 12, when volunteers will be taking to the streets and shopping centres across Ireland to sell purple roses for €2 each.

The name came about because of the phrase children often come out when trying to say ‘cystic fibrosis’.

You can donate €2 online at 65Rosesday.ie Spar stores are behind the appeal,aiming to raise €120,000 for Cystic Fibrosis.

Monies raised will go to fund various services, including grants for supports such as counselling, fertility treatment, and transplant assessment, as well as raising funds to assist the building of the new CF in-patient unit at Beaumont Hospital in Dublin.

Ireland has the highest incidence of CF per capita in the world, with almost 1,400 people living with the disease.

For more information, see www.cfireland.ie