Celebrating Forty (One) Years with Cindy
Cindy is a dynamic 41-year-old lady with cystic fibrosis (CF) who is a successful chef living and managing her very own Café Boranup near Augusta. She is also happily married and has a cool dog.
What age were you when you were diagnosed?
I was diagnosed at birth. Dr Williams kissed me, tasted salt and sent me straight to Princess Margaret Hospital (PMH). I also had meconium ileus and he had a previous patient in Donnybrook, so he saw the similarity.
Did you and your parents go to hospital for education and management of CF after you were diagnosed?
Due to distance and work, my dad did not have CF education. Mum went to PMH for education, but she was told that I probably wouldn’t make it so to go home and prepare for a funeral. I was in a After two bowel blockages and regulating salt intake, things settled down and obviously I was ok.
Did you spend much time in hospital when you were young or was this something that happened more as you go older?
I went back into hospital when I was five months with a bowel blockage. There were enzymes then, but they caused a bit of a rash and I couldn’t take breast milk so had to have “pre- digested” milk.
My parents took me monthly for check-ups until I was about six months old and then it was every three months. I kept pretty well as a child until I got whooping cough when I was twelve, despite immunisations, ending back in PMH.
I have had a few issues with sinus, having between 14-24 sinus operations, the last one was when I was 24 years.
Keeping well was mostly due to my parents; they kept me really physically fit. We lived on a dairy farm and there was salty sea air from the sea in Augusta. They were very serious about physiotherapy; all our friends were trained in percussion so they could do it too. I always took my full course of antibiotics. We didn’t have TV and I did lots of sports and general fitness and still do.
I don’t really identify seriously as having CF; we’re all really different, don’t compare, know your own body. CF has never been the centre of my life, however I have taken good care of myself so that it doesn’t have to be.
Having CF, was it something that impacted your life choices about education, career and relationships?
I went on a lot of camps with other children with CF. My Mum was one of the founding members so organised a lot of things. I first heard about cross infection when I was around 10 years and knew some kids that died, that really affected me and I never really planned more than five years ahead and lived by the mantra: only live once, so do it all now as I thought I wouldn’t be around. I still tried hard at school etc., because I liked the challenge, but the future was always more of a fantasy than a reality.
I had lots of different jobs, tried lots of different things. I tried to pack as much into life as I could, but settled into cooking because I love it and it can take me to different places. It can be physically demanding and that’s why I went into business rather than working for someone else. I did a mature age apprenticeship as a chef when I was living in Broome. This took three years. I was cooking for years before this, but it was getting harder to get jobs without the ticket. It was hard to stick to as I had not really done any future planning before, but my husband really supported me through this and kept me on track.
Relationships, well I needed an understanding man. The whole town where I live know that I have CF, I’m very open about it. It’s easier now that there is so much more public awareness about it. I have been with Jim now for thirteen years. When we first me I told him that I had CF. He knew someone who he went to school with that had CF and used to help with physio. I look really healthy so people don’t really think it’s too much of an issue.
What do you think are the most significant changes to the way people are treated with CF?
Physio has changed, it’s more breathing based than coughing. More about exercising the lungs. Home IV’s have made the most significant difference, it gave us flexibility to go home, to work etc., At the end of the day you just want to be normal. Hospital is not so much appointment based, it’s more tailored to our lifestyle and we can have as much input now into what happens with our treatment. I have a Spiro PD which has really helped me track my health and feed this back to the team at Charlies.
I don’t mind the three monthly check-ups, I get to see everyone that I need to and visit friends in Perth and do shopping; there are no shops in Augusta.
What do you think the future holds for people with CF?
I don’t think a cure is too far away. It won’t fix it for us older ones, but if you are born with CF now you should be ok. Keep focused and do your physio every day, exercise lots, wash your hands and tell your friends not to come around if their sick, give you a call instead.
Take care of yourself and put your health first. Be straight up about what you need and keep a good balance in your life.
Article from RED Magazine, Edition 2 2019.