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She's spent 1000 days in hospital. And she's only 23.

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1000 days. 24,000 hours.

This represents the amount of time I have spent in hospital as a patient with cystic fibrosis, trying to overcome acute lung infections through the use of very potent intra-venous medication, intensive physiotherapy and various other medical exams.

Currently, the median prognosis for a person with cystic fibrosis is only 36 years old. I am 23 years old. This is unacceptable. Better treatments are out there; we just need funding to be able to support the medical research that can find them.

As anyone with cystic fibrosis will tell you, CF is a behind-the-scenes illness. People often have no idea anything is wrong; but the truth is, it’s a terminal illness. Even after several hours of treatment each day, I have to accept that I still only have half or even one quarter of the lung function that a ‘normal’ person wakes up with everyday. Imagine breathing through a straw, (seriously, you should try doing that) or having a brick lodged in your chest while trying to live your life, and you will begin to understand how CF feels.

Cystic fibrosis is primarily a respiratory illness, but ultimately a multi-organ disease, paralleled with equally broad and severe consequences. People with CF are pancreatic insufficient, have liver and kidney damage, and our hearts are under constant pressure due to the overexpansion of the lungs. Within the lungs, the core problem is that the chloride channel (CFTR) that controls moisture – which exists in the normal population at birth – is dysfunctional for people with CF. This imbalance causes an overproduction of thick mucus that inhabits lungs and causes a multitude of problems, including harbouring very dangerous forms of bacteria. These problems fundamentally mean that I can go from having a common cold one day, to pneumonia the next.

Hospital visits hallmarked my upbringing, as they do with all CFs, one of the reasons behind why people with CF are typically strong and independent people – I had to learn responsibility for my treatments and medications from a very young age, and conversely, had to learn to accept the consequences of not doing so. Usually those consequences involved becoming unwell.

“Tune-ups” can occur as infrequently as twice a year, or as frequently as six times a year, depending on stage of illness and severity of symptoms. Each hospital admission consists of intravenous antibiotic infusions for several hours a day, physiotherapy two to three times a day, lung function tests and specialised meal plans, bone density scans (to test for inevitable osteoporosis) and diabetes tests (CF related diabetes is very common in CF sufferers), not to mention social workers, pharmacists, respiratory teams, occupational therapists and dieticians! It takes a big support network to combat CF. Not to mention family support.

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Because of CF I have to consume three times the normal calorie count of someone healthy my age. This is due to two things: firstly; my body is working overtime to counteract the internal infection and damage, and therefore needs more calories to aid the process. Think of it this way – CF patients can work off the same amount of calories in their sleep as a marathon runner would during a race. This is an indication of how hard our bodies are working to ‘keep up’ and fight infection. Another reason is that CF patients cannot absorb nutrients in the body, which also catalyses the below-average height measurements often associated with CF people.

Often, due to the tissuing of veins that many CFs encounter due to hundreds of intra-venous catheters over the years, a more permanent catheter must be surgically inserted called a Port-A-Cath. This device is a permanent metal chamber, which is threaded into a main artery of the body, the aim of which is to make hospital admissions easier for CF patients who, quite simply, have no veins left available (crucial for IV treatment). Adding insult to injury, some medications that we require even have organ damage as a side effect.

Despite all this I am trying to live as normal life as possible – I am a Queensland University student in my final year of Journalism – but I probably would not be here today if it weren’t for funding providing the research for new medications and treatment which are – for me and thousands of other patients with cystic fibrosis – life-saving.
It is clear that more funding is needed to provide the best medical care and support possible for people with CF and their families.

The outcomes of the work of organisations like Cystic Fibrosis Queensland and medical research cannot be measured on a balance sheet, or on Microsoft Excel, or in an annual review. You have to measure it in patients’ lives.

And we can only achieve that through funding.

CFQ currently receives just 46 cents per day for each client from government funding. This September CFQ is asking ‘WTCF’. For me information and to donate please visit this website.

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