Life With CF: A Battle For Survival

As any CF patient will tell you, living with the disease means living with unpredictability. Daily routines, therapies, and medication regimes are frequently altered in an attempt to combat the further deterioration of ones health. Lung infections come and go, bringing with them hospitalizations as well as the daily ingestion of both oral and I.V. anti-biotics. Pills by the handful are often ingested - Prednisone, Ciprofloxacin, Bactrim, Septra, Cotrim, Cloxacylin, and Pancreatic Enzymes – each one with a specific purpose. Puffers and nebulizers adorn the bedside tables of those who live with the disease, each one an integral part of a CF patients daily therapy routine.

However, the most difficult constraint is often the clock. Nebulizer treatments, often taken three times daily, can last over 30 minutes per treatment. Pep-masks and other forms of daily physiotherapy also take 30 to 45 minutes a day. The impending result is a daily schedule that is severely monopolized by the rigors of CF therapy. It follows, therefore, that life with CF entails sacrifice; we are often forced to neglect our friends and loved ones, our jobs, our schoolwork, our primary responsibilities, in an attempt to remain healthy. The sacrifices we make are often difficult, but they are almost always more favorable then the impending alternative.

Advances in medical science and improved treatment protocols have truly changed the lives of those individuals who are forced to battle CF. In 1960 a child born with Cystic Fibrosis rarely lived four years. Today, half of all Canadians with CF are expected to live into their late-thirties and beyond. These developments mean that CF patients are becoming more and more likely to enroll in post secondary education, pursue careers, get married, and have children. The quality of life for those living with CF has also been significantly improved by the recent mapping of the human genome and the discovery of the CF gene; both of which have had significant impacts on new research and treatment surrounding the disease. Indeed, the pace of CF science suggests that there is good reason to feel optimistic about the future. However, although this is encouraging news, many of us are faced with the daunting reality that a cure will inevitably come too late.

Despite being faced with the hardships and struggles associated with the disease, CF patients remain incredibly resilient and determined. For us, the name of the game is - and has always been - survival. The drive to hold on, to prevail, to fight, is what gets us through the difficult times. The ability to simply “hang on” until that magical day when a cure is found is what compels each and every CF patient to defy the odds and to rebel against their fate. Yes, life with Cystic Fibrosis can be complex and often disheartening. However, I have never met a CF patient who has chosen to dwell on these negatives. I must say, collectively, we are a fairly stubborn bunch.

That stubbornness, the unrelenting need to overcome, is a characteristic that can be found in many people who suffer from life threatening illnesses. It is a force that can not fully be described - only experienced. I suppose in many respects, it is a form of desperation, a refusal to give into the inevitable and expected. This unexplainable drive brings us together; not just CF patients, but anyone who has battled a life threatening illness, together we constitute a community of survivors. Our situations are all similar; we are forced to endure many of the same painful experiences and, at the very least; we all share an understanding of the daily struggles with pain, humiliation, feelings of defeat, and devastation.

It is this community of survivors, this web of motivation, which breeds strength and courage. Those of us who find ourselves struggling mustn’t look any further then this community to find our own personal source of inspiration. We draw on the successes of others, and we overcome knowing that others before us have faced the same obstacles – and succeeded. It is this community that encourages every sick individual to draw positives out of their negative situations. To complain, to grumble, and to gripe is to allow your sickness to get the better of you. Instead, those who live with CF protest, they stand up against the disease that threatens to end their existence. They fight, they battle and they struggle; they exchange blows with their enemy, sometimes prevailing, and other times being forced into submission. However, the outcome is not always as important as the fight itself. The decision to clash with your demons is what separates the true survivors from those who merely accept their looming destiny. Refusing to give up and refusing to give in is what constitutes a true survivor.