SIX months ago, Lizzie Walters was preparing for a lung transplant.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
Her lung function had fallen to 23 per cent, and the 16-year-old cystic fibrosis patient was left with few other options.
"We went to Sydney and started all the paperwork for the transplant," Miss Walters, of Hamilton, said.
Doctors predicted that even with the transplant, her new lungs may have an "expiry date" of about 10 years.
"That was one of the worst days for me. I went home and I wouldn't leave my bed for a couple of weeks," she said.
"I didn't see the purpose of having a social life or going to school and getting an education if I wasn't going to be around.
"It was my lowest point, mentally. And my physical health went down too because I thought, what's the point? It probably wasn't the best way to look at it, but that was my head space at the time."
Miss Walters said she had constantly felt out of breath - like she was breathing through a straw, or a thick mask.
Her medical team at the John Hunter Children's Hospital applied for compassionate access to a new drug that had recently been approved by the FDA in the US - Trikafta.
"It has changed my life in a drastic way. It has changed everything," she said.
Within seven weeks of taking the drug, her lung function rose from 24 per cent to 44 per cent.
After three months, it has risen to 50 per cent, and Miss Walters is no longer on the lung transplant waiting list.
"This is the best I have ever felt," she said.
"I can run up and down the stairs. I go for jogs with my dog. I don't have to come into hospital every school holidays. I have more freedom.
"I can keep up with my friends. I have more of a future to look forward to. It feels more normal now.
"I don't feel like my lungs or my breathing affects my day to day life anymore. It is the best I have ever been. I don't see how I can feel better than I do now. I just wish everyone could access it."
Dr Jodi Hilton, the director of the paediatric cystic fibrosis clinic and a respiratory paediatrician at the John Hunter Children's Hospital, said they had been "stunned" by the quick turnaround.
"We had hoped and expected her to improve significantly, but she exceeded our expectations and it happened incredibly quickly," Dr Hilton said. "The thing that is most impressive is the change in her quality of life, not just the numbers.
"Even though Lizzie has had a fantastic attitude and go get 'em quality, her lung function has been falling and we have struggled to keep her anywhere near where we would like her to be for five or six years now.
"She has been in transplant consideration territory for a long time. Once Trikafta became available in America for people aged over 12, it became available soon afterwards for compassionate access, and that's how we got it in Australia."
Dr Hilton was hopeful children aged under 12 could soon access the drug too.
"This medication is going to to be available to treat about 90 per cent of our CF patients," she said.
"It is important people know it's out there and that it is coming, and that it will hopefully revolutionise our treatment for CF so that it won't be as difficult and horrendous a condition as what it has been for most people.
"If we can get this drug into children with CF when they are young - they should have normal lung function throughout their life.
"It will be preventative rather than fixing. We can't fix the lung damage Lizzie already has, although this has improved it. But if we can stop that from happening in patients who have a diagnosis for CF and are eligible for Trikafta, that will be amazing. I'd lose my job happily."
Miss Walters is now preparing to sit the HSC exams next year.
"It's obviously going to be very stressful, but at least my health won't be one of the stresses adding to it," she said. "It will be a more normal HSC experience.
"I am so thankful to Jodi and her whole team for getting me on this medication, because I don't know where I would be without it."
While you're with us, did you know the Newcastle Herald offers breaking news alerts, daily email newsletters and more? Keep up to date with all the local news - sign up here
IN OTHER NEWS
- Hunter tourism revival in the time of coronavirus
- Belford Street Broadmeadow blocked after fire in first floor flat
- Knights go down to Eels in a thriller: SUBSCRIBER
- COVID informer: one step forward, two steps back for Australia
- Clicks replace bricks as Lego lovers go online
- Bill Gates says 'market forces' on vaccine would prolong pandemic
Anita Beaumont
Anita Beaumont is a health and general news reporter at the Newcastle Herald.
Anita Beaumont is a health and general news reporter at the Newcastle Herald.
