We’ve all heard of the cat with 9 lives but Billy O’Toole must have many more. Cróna Esler met the Claremorris man to learn more about his latest website project.

On May 2, 1986, the O’Toole family welcomed a beautiful baby boy. It was a dream come true for Maureen and Tony of Ballyglass, Scardaune, Claremorris. But when doctor’s informed them that there little boy had Cystic Fibrosis (CF), the news broke their hearts. A number of years earlier, the couple had lost another little boy, Laurence, at just nine months from the disease. Little did they know however, that there latest addition to the family was a fighter and had no intention of ever letting the condition get the better of him.

Back at home, Caroline, Martina, Maria and Anthony were eagerly awaiting the arrival of their little brother and from the moment they got him home, right up until this present day, they’ve been much more than siblings to Billy. They’ve been his vest friends.

At the age of 28, Billy has spent more time in hospital than any of us could ever imagine. Sadly, he also lost his loving mother when he was just seven but if anything, Billy’s life experiences have taught him to meet every challenge head on and never, ever, give up the battle. Now, the charismatic Claremorris man has launched a new website (www.billyCF.ie) to share his story, raise awareness for a number of organisations and also lend support to other people who find themselves with similar crosses to bear.

In his early years, Billy’s condition didn’t trouble him too much and up until the age of 13, he spent very little time in hospital. However, things were about to change. ” From age 13 to 16, I had to go into Castlebar Hospital for 2 two weeks every five weeks, so it would be two weeks in, five weeks out. Things started worse than when I was 16. My lungs had become scarred and I began to spend three or four weeks in hospital at a time. At 18, it was getting progressively worse. I went to college in GMIT but I was constantly in and out of hospital. “He explained.

When Billy turned 18, his treatment moved from Castlebar to Beaumont “I had all the tests and assessments done there. As well as CF, I had fungus growing and two collapsed lungs. They talked about gluing my lung to the chest wall but if they did that, there would never be any chance of a transplant so that wasn’t an option. I also had diabetes, osteoporosis and Crohn’s disease because I was on so many antibiotics. From 18 to 21 I was spending five weeks in hospital and two out. It was no life”

When Billy was 19, a lung transplant was mentioned. “Prof McElvaney told me my lungs would only last another six months but I wasn’t a candidate for transplant. At that point, I decided nobody was going to tell me when I was going to die”

Billy’s weight had always been an issue and physically, he couldn’t bring himself to eat. After the meeting, he agreed to have a peg tube in his stomach and each night, 2,000 calories were pumped into him.

Six months later, he went to see Prof Jim Egan in the Mater and was told he needed to increase his weight and try to get off antibiotics for a five week period. “He sent me away for another year and I continued spending five weeks in and two weeks out. My quality of life was non-existent. I was barely able to move and I was constantly coughing up blood.’’ In January 2010, Billy was finally given the go ahead for a transplant from Prof Egan but he still had to get the thumbs up from the medical team in Newcastle. “It was a double edged sword- I had to be well enough to get on the list but sick enough to need the transplant” In May Billy travelled to Newcastle where he spent a week undergoing tests. The CF consultant, Gerry Meitre, warned Billy that if he was selected for a transplant, he could die on the table. “I knew that was a possibility but I also knew I had to take the chance if I wanted to survive.”

By August, Billy had made it onto the active transplant list for Newcastle and at the beginning of October, when he went to check his bloods and lung function levels, the team were anxious to keep him. ‘’ It was a Thursday and I put them off for a few days and told them I would go in the following Tuesday.” Little did he know, it was the best decision he would ever make. The call from Newcastle came on Monday night. Had Billy been in hospital, it would have been a disaster. “If you’re in hospital when they call, they won’t take you, in case you bring over MRSA or anything.” In the middle of the night, Knock Airport was opened for Billy and on his journey to Newcastle, he texted his friends and made a list of all his passwords. Just in case.

Billy and his sister Martina arrived in the UK at 3.30am and were transported to the hospital. After the medical team took blood and X-ray, Gerry Meitre came in and introduced himself. Then he called Martina outside. It was a conversation she’ll never forget. “He told me the transplant needed to go ahead and there were five days left in his lungs. Billy was dying. If the transplant didn’t go ahead, he’d be gone by Friday.” Martina recalled

At 8.50am on Tuesday morning the 5th of October, Lynn Holt arrived at Billy’s room “Today is your day Billy, you’re coming with me” she said. For nine hours Martina and Billy’s dad sat waiting. At 6am, the surgeon met them. The operation was complete. Billy was in ICU, but it would be the next day before they’d really know if it was a success.

Generally after a transplant, it takes three days for patients to come off ventilation. By Wednesday evening, Billy was off the machine. By Sunday he was on an exercise bike. Billy spent 5 weeks in hospital before returning home.

Everything was going swimmingly until January 2, 2011, when his appetite dropped, his breathing became laboured and his temperature spiked. ” I was sure his body was rejecting the lungs. We rushed him to Castlebar and at first, he seemed to be returning to himself.” Martina recalled

The next morning however, Martina got a call from Dr Michael O’Neill. All Billy’s family needed to make their way to the hospital. FAST. As it turned out, Billy contracted swine flu and when they arrived in ICU, the CF nurse and physiotherapist were by his bedside, pressing his chest to keep him breathing. Billy’s lungs were filling with fluid and the medical team were reduced to tears.

“Dr O’Neill spoke to us and explained we needed to get him on life-support. He told us to pray that Billy would make it through the night. They couldn’t move him because he wasn’t stable enough but at the same time, he needed to get to the Mater” Of course Dr O’Neill was well used to dealing with Billy and reminded the family that if anyone could pull through, it would be Billy. At 10am the following morning, Billy was moved from Castlebar” we didn’t know if he would make it to Dublin and effectively said goodbye to him in Castlebar.”

After nine days on life support, Billy woke and for the next two months, he had to learn how to walk, eat and look after himself. True to form, Billy soon returned to normality and life was peachy until May 2nd this year 2014-Billys 28th birthday.

“I was in Dublin for a meeting and went out with some friends that night. When I got back to the house I went to walk upstairs, I reached had just reached the second step, when I fell back and hit my head.”

Billy was taken to Vincent’s Hospital and at first was being treated as a simple fall. In reality though, Billy suffered a massive Brain Haemorrhage down the right side of his brain. He had taken aspirin that morning, which thins the blood and doctors still don’t know if the haemorrhage caused the fall or vice versa.

“In hospital, Billy lost the power of his left side. He could talk at first but wasn’t making any sense. He had no power in his left side. It was like stroke symptoms. “Martina explained.

The Sunday night we got him into Beaumont and he was put in high dependency. Over the course of three hours, things went from bad to worse. At 1 am there was a massive swelling on the brain and they discovered from another scan that the bleed at the front was in an area they couldn’t operate. His body was also rejecting the medication he was moved to ICU. It was life or death but we kept hoping and praying Billy would continue to fight.”

Two weeks later on Sunday, Billy woke. By Friday he was walking again.

Billy O’Toole has a remarkable story to tell and after another major experience last May, he began to think about writing a book. He started to put his thoughts into words and what has transpired is an impressive new website, where people can learn more about Billy’s story, his conditions, his experiences and his positive and grateful attitude to life.

Take a look at the website. We could all learn a thing or two from Billy O’Toole.

Written by Cróna Esler deputy editor of the Western People