In an article by the BBC, one woman with cystic fibrosis recounts how the “absolute revolutionary” Kaftrio drug has improved her life.
Jody Lewis, 31, is an avid rider and one of around 80 people in Wales to have had Kaftrio, a “revolutionary” drug treatment for cystic fibrosis, at Liverpool Heart and Chest Hospital.
Cystic fibrosis is a genetic condition resulting in faulty cystic fibrosis transmembrane conductance regulator (CFTR) proteins which regulate the transfer of chloride ions into and out of the cells. The condition causes thick, sticky mucus to build up in the lungs, gastrointentinal system and other organs.
The treatment is suitable for around 90% of CF patients aged 12 and over and has been approved for use in the UK. Kaftrio is a triple combination of elexacaftor, tezacaftor which corrects the faulty CFTR protein, and ivacaftor, which potentiates CFTR.
Ms Lewis, said since taking it she had “a whole future and life” ahead of her.
Her condition worsened about two and a half years ago, when she was put on continuous oxygen supply, needing four or five oxygen bottles a day, almost placed on a ventilator and considered for a lung transplant. This meant stopping riding and changing how she cared for her four dogs.
“I’d have to change my complete lifestyle just to survive. I get that I’d have a second chance at life but it wouldn’t be me, it wouldn’t be true to who I am,” she said. At her worst, she said she could barely cope with simple tasks such as making tea.
This all changed when she started taking Kaftrio last year.
“Within a week, my [oxygen saturation] was going up and up to 94, 96 and I wasn’t even on oxygen and I can’t remember the last time I saw those numbers, it was mad.
“I’m now as good as I was back when I was 25, so I’ve like regained six years of my life,” she said.
“When I was 25 I was fine, I was in work, living a normal life, so it’s given me all that back really,” she said, adding that it was “really emotional” and “fantastic” to be able to ride her horse again after two and a half years..
“I’ve got a whole future and life in front of me that I’ve never had to think about.”
Consultant Martin Ledson, clinical lead for respiratory medicine at Liverpool Heart and Chest Hospital, described the drug treatment as “absolutely revolutionary”, saying that it had changed the lives of 222 of the hospital’s patients.
He said that when his patients were born, they could expect to live to their 30s, so they have “lived all their lives with the knowledge that their life expectation could be 30 or even less”.
“What this drug does is extend that life expectancy who knows how long?
“Not only that, the patients immediately – within 24 hours – feel amazingly better. Their breathing tests improve, they get less chest infections, their digestion improves, they put on weight and in many cases need to take less treatment,” he said.
Source: BBC News
