The Statistics

So much of what we do in today’s society revolves around numbers. Numbers can define us, restrict us, classify us and motivate us. Every one of us is subjected, in one way or another, to this reality. Statistics dominate our modern world. From business to pleasure, every part of this world has become typified numerically. CF patients are no exception. Each day we are plagued with the notion that one day we too may fall victim to the statistics.

As of 2002, the median age of survival for Canadians with cystic fibrosis was 37 years of age. By numerically predicting the life expectancy of those people living with CF an expiry date has effectively been set for an entire population of sick individuals. I am by no means suggesting that this data should no longer be calculated or kept track of. It provides researchers with important information while at the same time allowing them to track the progress of certain kinds of advancements in medical therapy. However, despite these intentions I can say with some certainty that every CF patient has, at some point in time, given at least some thought to the harsh reality that this number represents.

As I approach my 24th birthday I am quite aware of this statistic. It effects almost every decision that I make in my young life. The decision to start a serious relationship, to marry, to start a family, to buy a house, or to pursue a career; all of these decisions must be made with some serious consideration in mind.

For most of my childhood I never saw myself as a typical CF patient. I knew that I had CF, and I knew that it had the potential to make me very sick; however, I was unwilling to except that the disease could ever get the best of me. It wasn’t until the summer of 2007 that I first came to the realization that maybe I too was just another CF statistic. It was that summer that the numbers finally caught up to me. What began as a mild chest infection skyrocketed into one of the most frightening experiences of my life. My lung function (FEV1), which is a measure of my ability to take in and exhale oxygen, dropped from 100% to nearly 50% in a few short weeks.

After a course of oral antibiotics failed to remedy the situation I was forced to undergo rigorous course of I.V. antibiotics which were pumped into my veins 24 hours a day for 3 weeks. After the 3-week cycle the Doctors were forced to stop the antibiotic treatment due to the fact that the high doses were severely impacting my kidney and liver function. The I.V. treatment had also caused me to suffer from some serious blood clotting in my right arm that meant I was forced to ingest blood thinners on a daily basis. As a last attempt I was put on an I.V. course of prednisone – a steroidal anti-inflammatory often used to treat cancer patients. Finally, after 3 agonizing months my lung function began to increase.

I slowly regained the strength that I had lost over the three-month ordeal. For my-self, my friends and my family, the situation was an eye-opener. Although everyone knew that I had CF, the severity of the disease had never reared its ugly head until the summer of 2007. I no longer felt invincible. I was forced to accept the fact that my CF could kill me. It was a notion that I had never bothered to entertain in the past – after all, 22-year-old men don’t often spend much time worrying about their mortality.

The road to recovery also presented some unexpected obstacles. The prednisone I was ingesting on a daily basis allowed me to breathe without having to experience very much wheezing, couching, or crackling in my lungs. However, the drug itself is not recommended for long term use, and as such, my doctors recommended that I slowly wean off of it. Unfortunately, after reducing my dosages my doctors and I soon realized that I had developed a dependency for the drug. As soon as my dosage was tapered below a certain percentage my lung function began to drop and the unwanted symptoms immediately returned.

Even today, as I write this, I continue to take a small dosage of prednisone to control my symptoms. It is this kind of medical reliance that often becomes a grim reality for many individuals living with CF.

I'm often asked, "what is the most difficult part of dealing with CF"?

The answer: dependency.

The inability to exist self-sufficiently. That is what causes us CFer's the most frustration.

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.

From the Inside Out

Cystic Fibrosis affects one in every 3,600 people born in Canada. My name is Erick Bauer; and I am one of those people. At the age of five I was diagnosed, and from that day forward every facet of my life has revolved around the disease. From the rigorous therapy to the emotional struggles involving infertility and mortality, CF has found its way into all the corners of my life.

My name is Erick, and this is my story.

By most accounts I am a typical 23-year old. I recently graduated from university, I have a girlfriend that I love and a part time job that I do not. I am an avid sports fan and a relatively skilled amateur athlete. I enjoy playing hockey, running, cycling, and when the situation calls for it, sitting on a patio with an ice cold adult beverage. I have a great group of friends and a Jeep that I spend far too much money on. Yes, by most accounts I am a typical 23-year old. However, there is one thing that differentiates me from most other typical 23-year olds: I’m dying.

At first glance I don’t appear to be sick. In fact, most would assume that I am in exceptional physical condition. My five-day-a-week exercise regime allows me to maintain a strong athletic physique. I am of average height and weight, and I bear no tell-tale signs of illness. Most would not equate my appearance with that of a fatally ill individual, yet with each day that passes my lungs grow weaker and weaker as Cystic Fibrosis carry’s on with its relentless attempt to end my life.

The majority of CF patients are like me; our illness disguised by our ostensibly healthy appearances. Our polished exteriors are mere façades that mask the true nature of our existence. Each of us is dying and each of us can feel it. Cystic Fibrosis works from the inside out; therefore, CF patients do not take on the appearance of being fatally ill until the disease enters its most severe stages. Because CF patients are indistinguishable amongst the greater population, the disease remains plagued by ambiguity and misunderstanding.

For most of us, explaining the intricacies of our sickness is an everyday occurrence. Misconceptions surrounding CF often leave people confused and disillusioned; I cannot count the number of times that I have had to explain to people that I do NOT have a severe form of asthma or that they need not worry about contracting some form of my disorder. The mis-information surrounding CF constitutes a real and undeniable obstacle for those people who are committed to curing this devastating disease. The harsh realization is that most people simply do not know enough about CF to consciously make an effort to fight against it. The irony is that Cystic Fibrosis is the most common, fatal, genetic disorder affecting young Canadians’ today and yet most people lack even a basic understanding of the disease.

Painted Rust

Hey everyone, and welcome to Painted Rust. The postings that follow represent my attempt to cope with Cystic Fibrosis.

Living with a potentially fatal disease means living with constant emotional strain. The deterioration of health is often followed by the deterioration of will, and, in turn, a sense of powerlessness that cannot be described - only experienced.

Such a devastating disease is intrinsically intertwined with pain and struggle. However, those living with CF learn to embrace the positives while disregarding the negatives. Cystic Fibrosis, therefore, serves as a reminder to live life to its fullest. To cherish the time we have with friends, family and loved ones.

Selfishly, I created this blog for my own personal benefit. My sanity depends on it. My hope is that these postings will provide me with a means of expression. A forum with which to share my frustrations, struggles, pains and victories. Yes, this blog is for me.

But it is also for you: the reader. If nothing else, I hope that these writings enlighten and educate. Cystic Fibrosis is a disease that is plagued by both ambiguity and misunderstanding. I urge you, the reader, to seek out more information about CF. Educate yourself, get involved, and make a difference.

Most importantly; get the message. Yes, CF represents negativity. But it also represents all that is precious in life. Accept these stories for what they are: tales of courage, determination, will power, friendship and love. My hope is that each one of you takes something away from these writings. Acknowledge the negativity in your own life, but never let it limit your potential. Live, laugh, and love – it’s the only way to exist.