For Ashe Spillane, it’s been an agonising four year wait to get her hands on Kaftrio, the latest medication being used used to treat patients have cystic fibrosis (CF) but after just over a month on the drug, she can testify that it’s certainly been worth the wait with her life having improved drastically in almost every aspect – physically, mentally and socially – since she first started taking it.
ystic fibrosis is a multi-organ disease that primarily affects the lungs and digestive system. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
Ashe first heard about the new game changing medication through her doctor who told her that she to keep herself well enough until the drug was available to the wider public. Ashe actually came close to receiving the medication two years ago when she applied to be part of a trial for it but unfortunately, she did not qualify then and so had to wait a further two years to get it. Even then, this year, the HSE hack a number of months ago set her back getting it and so, it when she finally got it in September, she joked that she had done her time.
Talking to The Kerryman this week about what the biggest positive effect she has seen in the last month compared to before, it’s simple one but something with so many positive knock on effects: she’s actually able to sleep at night now.
“Prior to starting this, the main thing for me is that I had absolutely no energy. Most morning’s I’d have been waking up tired because I’d have been up the night before coughing for anything between two and three hours. It was like constantly coughing so I had no break from it and so I’d wake up tired and because of that, I’d end up sleeping throughout the day and even then during the day, I’d be coughing as well. It was just constant really, it was non stop,” she said.
“I have so much energy now because I am sleeping through the night. I’m very rarely coughing now. When I started the drug, the first week, we have what’s known as the purge. It’s literally just everything pouring out of your lungs and I couldn’t believe the amount that I was bringing up. After three of four days though, that had settled and after a week, it was completely gone. I think it was maybe on the fifth or sixth night, I had woken up and I thought that as usual it would be something like 1am but it was 5:30am and I couldn’t believe that I had just slept for six hours straight,” Ashe continued.
The benefits of simply being able to get a good nights sleep have been huge for her, Ashe continued – including starting a new college course – as she joked that she has suddenly found herself with so many extra free hours in the day that she simply didn’t know what to do with them at first.
“I’m not tired or struggling to get up anymore. I’m waking up fully rested and I’m jumping out of the bed. It just makes such a big difference and that means that I’m not sleeping throughout the day either which is a big thing for me. My new course, I just wouldn’t have been able to do it before Kaftrio simply because I’d have burnt out,” she said.
“One of the big adjustments for me was how much more time I now have in my day. About week two or week three, I was like ‘jaysus, it’s only 3pm’ and I had so much done. I just wasn’t used to having this time to do things. I’ve been cleaning, I’ve been going for multiple walks a day. I just can’t sit still. Usually, I’d be sleeping throughout the day or I just wouldn’t have the energy to do anything, now I’m the exact opposite, I have so much energy. There’s suddenly so many more hours in the day that I don’t know what to do with myself,” she laughed.
Finally, Ashe said that the drug – which she will now be on for life and also her which her on brother himself started two weeks ago – for her has simply been a life changing one.
“It’s 100 percent life changing. In general, my daily life has completely changed. I used to take two nebulisers and there were three tablets so I’ve actually reduced it down to only being on the nebuliser once a day which is a big thing because the nebuliser takes 15 minutes so that’s 15 minutes of my day that I’ve gotten back,” she said, adding that on her walks with her mom recently, her mother has had to tell her to slow down as she’s walking too fast for her to keep up, something which before would have been unheard of.
“Even when I’m walking, it was very funny actually. I think it was maybe the second week that I was on Kaftrio, my mom she came with me and and after while she said to ‘jesus, will you slow down’ and I’d been thinking to myself that my pace had quickened alright and she said ‘yeah, it’s bloody quickened!’ It’s just more evidence of me having that extra bit of energy and that pep in my step, I guess,” Ashe laughed.