Looking Forward With Amanda
Amanda is nearly 47 years and considers getting older an achievement. She is a vibrant, insightful and inspiring woman who is able to share with you some of the changes to treatment over her lifetime.
What age were you when you were diagnosed?
I was nearly three years old (1972) when I was diagnosed mainly due to failure to thrive. No one could diagnose me; my mother was accused of been neurotic. It was a relief to my parents when I was finally diagnosed. I was started on a NO fat diet and pancreatic enzyme powder that had to be mixed with apple sauce so obviously my compliance was minimal. Physio was all the rage and I absolutely hated it! It was a constant battle for my parents with much crying and fighting. Unfortunately for my parents there wasn’t much education on CF back then but they were told not to expect too much as kids didn’t generally reach adulthood.
Did you and your parents go to hospital for education and management of CF after you were diagnosed?
There wasn’t much education back then but there were good support systems with CF NSW and other families with CF that formed close networks. We didn’t worry about cross infections in those days and great friendships were formed. Much of the bases of treatments were the same as now but obviously then less advanced. One medication I recall was mucomyst which was a foul tasting and smelling drug that was nebulised and mixed with coke for gut aches which I reckon could also unblock drains.
Did you spend much time in hospital when you were young or was this something that happened more as you go older?
Not so much when I was younger but increased as I got older. My first admission was when I was 9 years old. My parents were told that I had staphylococcus and Methicilllin-resistant staphylococcus aureus (MRSA) so I was isolated. Obviously this was extremely scary as I’d never been in hospital before and then I was put into this huge room where no-one came near me and when they did everyone had to gown up and a wear mask to see me. Funny thing is my main nurse ended up having TB! When I was 13 years I started going to hospital approx. every 1-2 years. I remember I was a guinea pig for any new treatments and young doctors to practice their cannulations skills on. I was the third person in Australia to get a percutaneous endoscopic gastrostomy (PEG). At 13 years I got an infusaport (port) which as a teenager I found extremely invasive. In my older teenage years, I generally had yearly admissions.
My mental health suffered being a teenager and generally having to deal with having CF. I really struggled about having a PEG & infusaport plus I was much shorter than everyone else. Generally I just felt really different. Up until my 30s I tried to keep having CF on a ‘need to know basis’ as I felt embarrassed and wanted to be ‘normal’. Let’s face it, often we (with CF) don’t look obviously any different and it’s a silent disease. I’m now much more open about it and really no one really cares or judges me and if they do it’s their problem.
Generally I have encountered very little discrimination. When I was in my twenties I worked for a bank and a credit union and didn’t receive much support. I received a lot of pressure about taking time off work so I resigned. I decided to shift my career to something I enjoyed & started work in the HIV where I receive much better support and realised by niche. I then went on to do Registered Nursing but once dong my Graduate year moved onto non-acute patients in community health which is more flexible, less chance of being exposed to people with bugs. Recently I had to drop down to 3 days a week due to health which was a tough but necessary decision.
Having CF, was it something that impacted your life choices about education, career and relationships?
Absolutely, I missed a lot of high school as it was easier to be at home than being at school ‘feeling different’ to everybody else so university wasn’t an option at that stage. I tried different careers including chef work as I had a passion for cooking but found this industry too physically tiring. As mentioned, my experience in working in the banking industry tough due to discrimination (this was in the 80s & 90s) & it was boring. I then went into welfare as I wanted to help people. I had finally found my niche and later in life studies nursing. Obviously general nursing put me at risk of bugs and was physically challenging so I adjusted my nursing career to specialise in Women’s and Sexual Health/Public Health which required extra study.
Relationships yes, especially when I didn’t tell people I had CF, but when I did later no one cared. I only had one incident where I was “dumped” because of CF. I now have a really supportive man in my life and we’ve been together over ten years.
What do think are the most significant changes to the way people are treated with CF?
Generally, people are seen as having a full and productive life, it’s not a death sentence now. CF is part of their life, but not their life, and it doesn’t define the person. I started Kalydeco 3 years ago and feel like my health was where it was ten years ago, I have more energy, can keep working, can exercise and generally lead a normal life within limits.
What do you think the future holds for people with CF?
I think they can do whatever they want to. New treatment can start before damage is done. There are more and more treatments and a lot more money is going into research. Most people are living relatively normal lives.
I believe mental attitude is a huge component and has a big impact on health. Get out there and live life, have friends, work, hobbies, sport, career, even if it’s part time or voluntary it’s important to stay involved. We all need something to get up for and a purpose in life.
Article from RED Magazine, Edition 4 2016.