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.