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Ask Amanda- Living a Full Life with CF

Amanda is an adult who has CF, she just turned 50 years old and works as a nurse. Amanda lives with her husband Kevin, two dogs – Lucy and Ben – and a cat named Gus. She enjoys cooking, reading, travelling, gardening, fishing, and going out on her boat.

ROZEE was lucky enough to have a chat with Amanda about how she is living a full life while also having CF.

What is something unique about you?

For the past 18 years I have lived in remote areas of Western Australia. I lived on Rottnest Island for a year and then moved up to the Kimberley Region. I have lived in some extremely remote Aboriginal Communities and towns in the Kimberley Region. The Kimberley weather (which is very hot!) and the distance can be quite challenging when living with CF but with the flexibility and willingness to help of the CF Team at Sir Charles Gardiner Hospital, I have done this successfully.

Why did you decide to become a nurse?

I kind of fell into nursing in my early 30’s. I was travelling and ended up in Fitzroy Crossing, a remote Aboriginal town in the Central Kimberley. I met the Dean of Notre Dame University who told me I should be a teacher as I had developed a program for the Aboriginal kids where they got to use the pool if they went to school. I told him I was a Drug & Alcohol Counsellor/Educator and he then advised me about nursing. As the days went by the idea kept popping up in my head until I enrolled.

What steps do you take to achieve your goals?

To achieve goals, I write myself a list at the back of my diary at the start of each year. Everything from travel, personal goals, work goals and financial goals. I also set myself a weekly list of tasks and goals. I must admit, I have several things on the go at any one time.

With such a busy life, what motivates you to keep up with your treatments?

I make sure my treatments are done daily so that I do not get unwell. There is nothing worse than feeling chesty and coughing throughout the day when I do not have to by not doing treatment. Upon saying this, I’m not perfect and sometimes get too tired to do my nebs so I try to do them early rather than later in the evenings. All my daily tablets are in a lunch container under the coffee table and I put all my daily tablets into a bowl in the morning to ensure they are all taken. Nebulisers are done in front of the TV and I try to schedule them at the same time so that it becomes routine. Netflix, iView and SBS is my go-to when having treatment.

What advice do you have for kids that have CF?

Live life! Do not let CF stop you doing anything you want to do in your life. That is, do not let CF define you! Do not skip your treatment. Allow your treatment to fit in with your life. A great way to do treatment is watch Netflix or your favourite recorded shows. This is your time, so make it work for you. The key is to stay as healthy as possible, take all medication and treatments so you can live life as much as possible. I know it is time consuming and boring, I have been there, but doing treatment and taking your medication will give you a better quality of life. Trust me, the older you will look back and thank you down the track!

 

Interview from Rozee Magazine, 2021


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