Not long after my 19th birthday, I spent nine days in hospital after a burst appendix. It turned out to be a little more serious than I realised on my way in. I spent the first 3 days on a morphine drip. Being a lightweight at 70kg I looked pretty sick after dropping 11kg.
But I quickly realised I had it easy compared to some of my neighbours. On Day 2, I became aware of strange thumping sound that continued for what seemed like hours. Eventually I asked a nurse what the sound was. She told me they had regular patients with Cystic Fibrosis. I had no idea what CF was.
The nurse explained that it’s a buildup of mucus in the lungs that causes digestive problems. The thumping noise was the sound of hand on a back like when someone is choking. Only it goes on for hours, day after day, just so they can breath.
Those with CF tend to be young she told me, because there’s a good chance they won’t live past their teens. As I started to regain my strength, I could take short walks around the ward.
Walking past the rooms of the kids with CF, I noticed they looked like a bedroom. Posters on the walls, toys and games just like you’d see in any kids bedroom. These kids spent so much time in hospital it was made to feel like home. It was heartbreaking to see.
I was reminded of this when watching a story about Orkambi on The Project last week.
— The Project (@theprojecttv) May 4, 2018
Orkambi is a drug made by pharmaceutical company Vertex. It’s a drug that significantly improves the health and lessens the symptoms of those with CF. But without support from the government to get it on the PBS, it’s basically unaffordable.
Learn more about it at Cystic Fibrosis Australia