I’ll never forget the day I started Trikafta, it was 2020 and it was deemed I was unwell enough to apply for compassionate access to Trikafta, the new triple therapy modulator. I was unlucky to be that unwell but lucky to be granted access to Trikafta because it has been a real game changer and nothing short of a miracle for me! I took my first dose at around 10:30am on 20 July. That afternoon I took a walk outside of the hospital, a walk I have taken many times before. During the walk, I thought I could already feel a positive difference, it was like I could breathe easier, but I thought this can’t be true I must be dreaming! The next morning before I even started my hour-long clearance treatment, the mucus was already clearing, all on its own! After just 2 days my lung function had improved by 5% which may not sound like a lot but the difference in how I felt was worlds apart. 2.5 years later I have only had two hospital admissions and I generally feel the best I have in years! I have more energy, I have put on weight (sometimes I don’t think that’s such a good thing) and I actually enjoy exercise rather than just struggling through it like I was doing for years prior to Trikafta, I just feel so much better!
Prior to Trikafta, in 2019 my health took a nosedive, I had several instances of haemoptysis (coughing up blood) which is usually a sign of infection. One week after the third admission for that year, I presented to emergency with shortness of breath and a racing heart rate. It was discovered I had a nasty virus called paraflu. I was the sickest I had ever been, and I was on oxygen for the first time in my life. I felt so weak after just a few days, and I wondered how I would ever recover. With a lot of help and hard work, I did recover and returned home after 12 days in hospital, however, I had suffered more lung damage and I struggled to hold my lung function to where it was when I returned home. This admission brought up a lot of feelings for me, I missed a family holiday to New Zealand and the start of my first project at the job I had started just two months prior. I had felt my health slowly declining since about 2015 but I felt like things were really speeding up now. Doing simple everyday tasks like walking from the car to where I worked or climbing the smallest of hills on my walk with the dog were a constant reminder my health was declining. These seemingly little things were becoming difficult and uncomfortable. Thanks to Trikafta, the weight has lifted from my shoulders. I am constantly reminded of how far I have come and what this drug has given me – it has given me my life back.
Children born these days with cystic fibrosis who have the opportunity to start these amazing drugs at a much younger age then I did could have such a full life ahead of them, hopefully they won’t even know what it is like to be really unwell.
Access to Trikafta has life-changing outcomes for our community, however, 6–11-year-olds still have no certainty nor commitment from the Government in funding for this life-changing drug. We need your help to guarantee reimbursed access to Trikafta for our children today. We encourage all of our members to continue to reach out to their local MP in order to push Trikafta access for 6–11-year-olds over the line.
Cystic Fibrosis Queensland is the peak community NFP community charity working with and for the increasing number of people living with cystic fibrosis who attend a Queensland Health Clinic for treatment. Cystic Fibrosis Queensland funds research, advocates on the behalf of and delivers support and service programs to people living with cystic fibrosis. Our mission is Lives unaffected by Cystic Fibrosis and we assist everyone affected by cystic fibrosis to live fuller, healthier lives.
With no designated government funding, Cystic Fibrosis Queensland relies on donors, grantors, and fundraisers to help meet the needs of the increased demand for our grassroots work. Donate Today