Nicole Adams: It feels so good to just breathe in air after six weeks... I'm proof three little tablets can save a life
Weeks ago Nicole Adams was fighting for her breath in hospital, but now the cystic fibrosis sufferer is making progress thanks to therapy drugs. Lauren Harte reports
A fortnight ago, cystic fibrosis (CF) sufferer Nicole Adams was fighting for her life in a hospital intensive care unit. Four days into the new year and decade, she is relaxing on her sofa in her Newtownabbey home and feeling hugely glad to be alive.
The two-week turnaround has stunned both her family and doctors who are all too aware of how different the outcome could have been for the brave 28-year-old.
"When I walked through my front door again for the first time on Thursday after all those weeks in hospital, I finally felt free. I've never been more happy to be here and it feels like a dream," Nicole told the Belfast Telegraph yesterday.
The talented hairdresser was admitted to Belfast City Hospital in November after a series of devastating infections left her lung capacity reduced to just 13%.
Nicole, who was diagnosed with the incurable respiratory condition when she was just six weeks old, contracted an airborne disease, Burkholderia cepacia, while in Thailand in 2014.
Since then her health deteriorated rapidly but she believed the triple combination therapy drug Trikafta could buy her precious time and give her back her quality of life.
However, US pharmaceutical company Vertex, which manufactures the medication, has failed to strike a deal with the NHS to supply the product in Northern Ireland, England and Wales, even though it is available in Scotland and the Republic.
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While Nicole was in hospital her relatives and friends managed to raise the estimated £20,000 needed for a month's supply of the Trikafta treatment.
At her lowest point just before Christmas, the former gymnast and cheerleader was on oxygen 24 hours a day.
Her family, including her mother Jan (62), brother Lee (30) and professional boxer boyfriend Ciaran McVarnock (27), were gathered around her hospital beside, contemplating having to plan her funeral.
"I only bought my house last year and it's my pride and joy but my Mummy was wondering what she was going to do with it if anything happened to me," Nicole said.
Ciaran also admitted driving home from hospital one night and crying his eyes out as he started thinking about life without his beloved girlfriend.
"I'm the most positive person you could meet but when Nicole was in ICU, that's when my doubts kicked in," he said.
"That night in the car I was planning out her funeral in my head and thinking about horses and carriages.
"I was never so scared in my whole life as I was at that time.
"Nicole wasn't able to talk or move as she had to concentrate on her breathing.
"Once I got home and wised up, I realised that I had to keep fighting along with Nicole."
With her condition deteriorating, the doctors said Nicole's only option was intensive care as she needed to be on life support or she would probably die.
Despite being given the highest levels of oxygen, her lungs were giving up and she was struggling to breathe.
Ciaran added: "The doctors said her lungs were failing and they didn't have enough oxygen to give her.
"Her lung infection marker score has gone from a high of 300 to 11, the lowest it's been in 10 years, which is unbelievable.
"While she was in intensive care she was on 80 litres of oxygen a day but now that's down to just one and shows how powerful the drug is."
But Nicole was adamant that she did not want to be in intensive care even though she knew it was her last hope.
"Anyone I know with CF who went in there never came out again and when they brought me in I was screaming and covering my eyes because I didn't want to be there," she said.
"I was so scared going through the doors of ICU as I thought my life was over.
"I'm so stubborn but when I saw my family's faces I just knew that I couldn't refuse my only chance to get better.
"Sitting back at home now I'm so glad that I did it because otherwise I wouldn't be here."
The rare disease Nicole picked up five years ago means she cannot avail of a lung transplant, leaving a deal between NHS chiefs and Vertex chief executive Dr Jeff Leiden as her only hope.
Following a high-profile media campaign, Nicole was finally granted the lifesaving drugs on compassionate grounds on December 21 and since then her recovery has been rapid.
Ciaran and Nicole had booked to go on a three-week holiday in the sun over Christmas and while the festive period was instead spent in hospital, Ciaran says he is just relieved to have his girlfriend back in good health again.
"I can't even put into words how proud I am of her for coming through all this," Ciaran said.
"The drug has given her a second chance at life when she was knocking on death's door.
"I'm so glad she's here and now it's the start of a new chapter for us.
"Nicole is the perfect example of why every cystic fibrosis patient must have Trikafta and we need every sufferer to have access to it because sadly she won't be the last person in this position."
Nicole lost two stone during her six weeks in hospital and is looking forward to spending the next few weeks eating, sleeping and relaxing.
"When everyone else at this time of year is trying to lose extra pounds, I need to start putting them back on again. It's going to be a case of Netflix and chill. I bought all these new clothes before Christmas but they are hanging off me now," she laughs.
All of Nicole's Christmas presents remain unopened but her family are planning a belated celebration with turkey and all the trimmings this weekend. While she is glad to finally be home, Nicole is also angry that she had to fight for so long to get her treatment.
She is also calling for the drug to be made available to all sufferers as soon as possible.
"I'm so glad I spoke up about cystic fibrosis as not a lot of people know about it, and proud that I showed people how hard it is, but thankfully I've come out the other side better.
"But it shouldn't have been that way and I should have had Trikafta sooner."
While Nicole now has her treatment, she has no idea how long for.
"It's on compassionate grounds and could be forever or just a month or a week," she said.
"I have enough medication for another month which feels so surreal but I can tell you this is nothing short of a miracle. However, it's up to the drug company whether they want to keep me on it or not.
"They could pull the plug at any moment but I dare not think about it and just have to keep going.
"My aim is not to end up back in hospital for a long time except for check-ups and reviews."
Nicole is also hugely grateful for all the care and support over recent weeks as she battled to stay alive.
She added: "Ciaran and I come from different religious backgrounds but I'm so grateful to everyone from both sides of the community for their love, prayers and amazing support.
"Also, all the doctors and nurses who were outstanding and the extra care they give to the very sick people is out of this world.
"Life's a gift and you can't return it."
The couple are now looking to 2020 with renewed optimism after the last few weeks and hope Nicole will be well enough to attend a charity football match in aid of the Cystic Fibrosis Trust next month.
Belfast boxing star Paddy Barnes is part of an all-star line-up which also includes boxers Carl Frampton and Ryan Burnett as well as NI football legend Keith Gillespie, taking part in the game at Seaview on February 9 at 5pm.
Ciaran is also focusing on a return to his boxing career, which had been on hold during Nicole's illness.
"I rang my manager about arranging a fight so I've been given a date in May in Manchester because before then I want to focus on Nicole getting better and off the oxygen for good," he added.
For Nicole it is now about taking each day as it comes and rebuilding her strength.
"It feels so good to just be outside and able to breathe in air after six weeks in hospital.
"I'm just a regular girl from Newtownabbey who wanted to help myself and others with CF speak out and get the drugs we deserve.
"And I'm proof that three little tablets can save a life!"