By Mia
Hi, my name is Mia, and I was diagnosed with cystic fibrosis (CF) when I was 6 weeks old. I have one copy of DF508, and another rogue CF gene called 1154InsTC.
Lucky for me I have the DF508 gene which means I can have access to the wonder drug Trikafta!! I have attended the John Hunter Hospital CF clinic since 2009.
I am now 17 years old and am currently in Year 11 at St Philips School in Port Stephens.
After many CF hospital admissions and many cannulas inserted, (along with many failed attempts), we decided it was for the best that I have a port-a-cath inserted in 2021. The CF nurse explained the whole process to me and even had a dummy one to show me before I agreed to go ahead. It has been so much better not having to have a cannula put in on each admission, the doctor just plugs into the port and off we go! Each clinic visit, the CF nurse flushes the port and that is all it takes to look after it. If I knew how good it was going to be I probably would have chosen to have one put in sooner.
As far as the PEG (gastrostomy tube) in my belly goes, I was having a bit of trouble gaining weight, so my family, CF team, and I decided it was a good idea to get a tummy peg and have overnight feeds. It really has taken the pressure off the constant monitoring of my weight. One thing I really have a problem with is having to drink lots of milky, creamy drinks all the time. I really don’t like them, so it is so much better being able to do feeds via my Peg. Also, when in hospital, I can just have a bolus feed, which is where the feed gets tipped into the PEG via a tube and big syringe, and goes straight into my tummy. As I am going into Year 12 now, I will continue with the overnight feeds, until I finish school and then re-assess the best way forward.
One of my concerns was that people would look at these things in my body and judge me. Over time I have realised that people don’t notice, I am the only one who notices because I know they are there, but I have become used to them. For my Year 10 formal, Mum and I managed to find a gorgeous dress, no one would ever even know I had anything at all in my body!
Have to go now and pack for my Duke of Edinburgh 4-day 60km trek, up near Coffs Harbour – can’t wait, I’m super excited!
My advice to anyone with cystic fibrosis is to be yourself, be strong, run your own race, and dream big! That’s my plan for the future.
The views, experiences or comments shared on this website are not medical advice and may not reflect opinions or beliefs of Cystic Fibrosis Community Care. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health.
