I’ve had countless hospital admissions, blood tests, doctors appointments, x rays, ultrasounds, MRIs, CT scans. I’ve coughed up blood multiple times, I had my second abdominal surgery in 2009 because of severe acid reflux, I take up to 15 tablets daily to digest my food, I have mild CF related diabetes.

My current level of health is best described as stable. My lung function is 70% and considering others in my position that is actually quite good.

This number might not mean much to someone without CF, but what it reflects is how well you breathe, how much air you take in and how much air you breathe out. Cystic fibrosis primarily affects the lungs and pancreas with thick mucus, mucus is supposed to ensure the internal organs are hydrated. With CF the DNA instructions are programmed incorrectly and not enough water enters your cells, thus mucus production is ruined and your mucus is too thick. This kind of mucus attracts bacteria and other viruses or fungi that naturally exist in the world and invites them in for a party in your lungs. This creates an infection that leads to hospital admissions ranging from short 2 weeks stays to months long depending on the severity.

Cystic fibrosis can also affect the pancreas and bowel function. I don’t have digestive enzymes which are responsible for breaking down and digesting food, this means I have low absorption of calories and can lose weight quickly. I have also experienced two more bowel obstructions that led to another hospital admission, needing a nasogastric tube each time.

Having anxiety this will be my entire life, I started to cry in front of the doctor at the Cystic Fibrosis clinic at Royal Prince Alfred Hospital when I went for a routine check up in November 2023. I was then notified about an upcoming trial based in Newcastle called the Origin 1 trial, designed to test the effectiveness of Trikafta in patients with rare genetic mutations. CF mainly affects those with the most common gene type F508del.

I fall into the 10% who are not eligible for access to Trikafta through the PBS as I don’t have this gene type.

I have seen tremendous improvement in my health while temporarily taking Trikafta. The change has been almost instant. My mucus goes from its usual black/ green yellow colour to pure white. This change decreases the level of nausea I feel on a daily basis. I have more energy, I finally experience having an appetite, the biggest change has been my lung function. It has jumped from 68% to 84% after just two weeks on the medication. I am able to breathe in more air when I take a deep breath.

My hope is that further pathways are accessible to CF patients that give us the ability to advocate for ourselves to gain access to life improving treatments.