The Cough

When you've been living with a chronic lung disease your entire life you start to notice patterns in the way that people interact with you. Some of them are positive, some are negative, and some are downright humorous.

One common pattern is the way in which people have come to recognize me. After having known someone for a long period of time you can often recognize their presence in a room by simply hearing their voice,heir laughter, or even the subtleties in their footsteps as they walk across a hardwood floor. I too have found that people have come to recognize me in a unique way. 

For years my best friends and close family members have claimed that they can identify me immediately through my cough. Whether we are in a grocery store, a restaurant or at a house party, my cough has become a way for people to locate me quickly and easily. After moving out of my parents house my mom told me that the one thing she immediately noticed was how quiet the place was without my constant hacking (that and the fact that groceries seemed to last much longer in the fridge than they did when I was around). 

Stefanie uses my cough to track me down whenever we get separated in a mall (I usually wonder off to find a sporting goods store) or supermarket (you can most always find me by the butchers counter). Even my co-workers have come to identify me in this way. I'll never forget the first time my company president belted out "good morning Erick" after I had coughed while waiting for a document to print near her office. She couldn't see me, but she clearly knew I was there. 

The irony in this is that for years I made a conscious effort to avoid coughing in public. I didn't want people to know I was sick. I didn't want them to have sympathy for me or to judge me because of my CF. I also grew tired of getting dirty looks from strangers who clearly wanted me to know that they were disgusted by the fact that I would wonder out in public with such an awful case of bronchitis or pneumonia - didn't I know that those conditions were contagious!?!?

University lecture halls were always the worst. Having to suck back the urge to cough as the mucus built up in my lungs over a three hour class was painful and frustrating; but it was far better than embarrassing myself by interrupting a group of 500 students and pissing off the professor.

My attempt to lead a cough free life prevailed for years. Then, at some point, I had a change of heart. I don't recall exactly when this happened and I can't remember exactly why my patterns of thinking changed, but for whatever reason I finally came to the conclusion that I didn't give a shit about what people thought.

I have CF.
I cough.
Deal with it.

Not only did this approach allow me to physically function properly, but it also changed the way I interacted with people on a daily basis. For better or for worse I no longer had time or patience for those who judged me. I began to take criticism in stride - I wasn't perfect and I never would be. I began judging myself by my own standards, and not those that I ostensibly assumed others held for me. I was living my own life...running my own race.

To this day I continue to exist in this manner. 

I realize that sometimes this makes me appear selfish, crude and insensitive. That is not my intention. In fact those who know me best would attest to the fact that I am selfless, passionate and caring; however, those traits are often reserved only for those closest to me....those who I have come to know and trust.

And so I continue to hack and cough without care.

In fact, I embrace my wheezy existence....it's made me who I am. And if you don't like it...you can (cough) off! 

The Battle

I've often talked about how the most challenging part of living with CF is not enduring the physical setbacks, but managing the emotional affects of living with a fatal illness. As true a statement as this is, sometimes the physical setbacks can be pretty damn difficult to manage as well!

Case in point, in the last two years of my life. 

I always hesitate to share my negative experiences with cystic fibrosis. I find myself feeling guilty for complaining about my issues; when you consider the hardships that many CF patients face, my problems are relatively minor.

Yes. My lung function has dropped twenty per cent over the last two years, but my FEV1 still sits above 75 per cent most of the time. 

Yes. I am forced to manage weekly hospital visits and doctors appointments, which often require me to miss work or put off other priorities. With that said, I have still been able to pursue a career in a demanding, fast-paced industry; something that many CF patients can only dream about.

Yes. Having to take 60 pills a day, spend hours doing treatments and therapies, and constantly deal with the ups-and-downs of CF can be difficult at times. But when I find myself getting frustrated or feeling overwhelmed, I think about those CF patients who have had to endure the pain and suffering of dealing with a double lung transplant. I think about those CF patients who have succumbed to the statistics and lost their lives to this devastating disease without having the chance to do so many of the things that most people take for granted.     

It has taken me a long time to realize that it is okay (maybe even necessary) to complain sometimes. Not only does it help you get through the difficult times by putting things into perspective and evaluating how you really feel about certain issues, but it also gives other people the opportunity to support you, which is something that I have always had a difficult time doing.

On that note, the last two years have been fucking hard. 

I've managed to accomplish a lot; from marriage to my MBA, but it has definitely come at the cost of my health. I've been hit with setback after setback, including (but not limited to) kidney failure, diabetes, blood clots and pulmonary embolism, lung infections, allergic bronchopulmonary aspergillosis, cushings syndrome (as a result of high dose prednisone), early onset osteoporosis.........okay, you get the point.

I've also experienced several mental breakdowns, which have ranged from depression to severe anxiety. Many of these episodes were related to the symptoms caused from the laundry list of medications that my body relies on to function. At times I hated myself, hated my life, and felt truly uninspired to move forward. Luckily, I have an amazing support network that pulled me through.

I've had to deal with the fear and uncertainty that come along with living with a fatal illness while trying to manage a career, pay down a mortgage, complete (and pay for) an MBA, consider starting a family, run a successful non-profit organization (shameless plug: www.fflf.ca), and devote an adequate amount of time to my friends, my family, and most importantly my wife.

Yes. The last two years have been fucking hard. 

But I am still here. I am breathing. I am beating CF.  

Yes. The last two years have been fucking hard....but so is the thought of quitting. 

My battle is a constant one, and I recognize and accept that it is only going to get harder. CF will slowly but surely continue to steal little pieces of my life each day as I grow older.  It will continue to kill me. But just as I have for the last three decades, I will fight back. 

I accept that I will eventually lose.....it is an inevitability. But I will battle. I will push back. I will fight to the end.

   

A pain in the......foot?

After dealing with CF for nearly 30 years I've developed a tendency to undermine any health concern that isn't related to my lungs. A broken arm? No worries, throw a cast on it. Sprained ankle? Ice it. Fever, migraine, nausea? There's a pill for that.

This logic always seemed pretty reasonable to me: if it's not going to threaten my ability to breathe, I'm not going to waste my time worrying about it.

So when I started to experience swelling in my feet and legs this spring I was quick to attribute it to the high dosage of prednisone that I was on at the time. Then came the bruising, which I also wrote off as being a part the nasty reality of long-term steroid use.

And so I went about my daily business, bruised and swollen, for nearly three months.

As it turns out, this may have been a poor decision on my part. It wasn't until the pain from the swelling in my legs became so overwhelming that I could barely walk that I finally decided to book an ultrasound appointment. 

I knew the news was bad when half way through the ultrasound examination the technician got up and rushed out of the room, leaving me alone, pantless, and a little confused. When he returned he handed me a piece of paper that had been folded in thirds, put in an envelope, and stapled shut, rendering it unreadable. He then told me to go see my doctor right away, and that if she wasn't available to go immediately to emergency.

Minor tangent: if you are a medical professional I would highly suggest you DO NOT utilize this approach when giving your patients news unless your goal is to cause a massive coronary or a panic attack. After an hour of waiting (my mind racing over the endless list of self-created worse-case scenarios) my doctor finally arrived.

The bottom line: the pain I was experiencing was because a series of blood clots had made themselves at home in my left leg. The threat was that these clots could (or potentially already had) spread into my lungs, heart, and possibly even my brain, causing everything from a stroke, to a heart attack. 

The treatment: IV antibiotics to stop any infection as well as self-injected heparin to thin my blood thereby halting the formation of any new clots. The long term treatment involved being on oral blood thinners for a period of up to 12 months.

The good news: after being on treatment for a 6 days I seem to be responding well. The pain in my leg has diminished quite a bit, the clots have not spread, and I am finally back in the office (you'd be surprised how badly you yearn for work and routine after sitting at home/in a hospital for a week). 

The bad news: I currently look like a month-old plum. Seriously, whoever decided that blood thinning medication should be given as an injection must have been a real comedian.

So at the end of the day I suppose there is really one lesson to be learned here:

When your wife tells you to get your ass to the hospital (even if it's just for a swollen foot)....do it.

He's Back

It's certainly been a while. Almost three years to be exact. So what's new? Lets just say the last 36 months have been busy. How busy? Well, here's a quick recap of the big events that have impacted my life since my last posting:

1. After putting up with me for more than eight years, Stefanie and I got married
2. We bought a new house and managed to find some great tenants who are now renting out our loft
3. I started my MBA and somehow managed to survive the first year and a half of the program (barely)
4. I became an uncle
5. Friends For Life has become a fully registered non-profit comprised of a team of over 25 amazing people who work tirelessly to build awareness for CF and cancer

Yes life has been good.

That's not to say there have not been setbacks. My health has been sporadic at best. Most recently I've been  dealing with a long-term ABPA flareup. As a result, I was forced to start back on high-dose prednisone (65mg/day), which led to a slew of far-too-familiar side effects, including:

• Weight gain and the reemergence of the infamous "moon face" 
• Kidney and liver impairment
• Blood clotting and pulmonary embolism
• High blood pressure
• Prednisone related diabetes
• Insomnia and spontaneous panic attacks

It's been a challenge managing all the aspects of daily life while trying to remain focused on keeping relatively healthy. I've been forced to prioritize, which has often meant not being able to make time for friends, family, or myself. The reality of living with CF is that everything else becomes secondary at times. 

Nevertheless, I continue to move forward knowing that things could be much worse. Perspective is key......I realize that.....and so I try to approach each day with a positive attitude regardless of the obstacles that have been placed in  my way. So what has brought me back to the blog? I'm not quite sure. Maybe it's boredom, maybe it's my way of coping with the stress of dealing with CF on a daily basis.  Regardless, I'm here.  Is anyone out there listening? Well that's an entirely different question.

Lucky

There are people in this world who bitch, who complain, and who constantly embrace negativity. There are those who moan about money, those who whine about inequality, and of course, there are those who cannot get over how “unfair” life seems to be.

Then there are those people who refuse to succumb to pessimism. These individuals scorn self-pity. Instead, they embrace the positive – even in situations that are inherently negative. I, myself, admit to sometimes giving in to the impulses of pessimism. After all, it is often much easier to complain than to overcome.

As many of you know, the last two year’s have been rather tough for me. I have battled several lung infections - a few of which landed me in the hospital. I have been hooked up to IV’s and pumped full of antibiotics; I have experienced significant kidney and liver complications; I have suffered from blood-clots and reoccurring bacterial infections; I have become dependent on steroids and a plethora of other medications. Needless to say, the last few years have taken their toll on me - to the point where I began to lose sight of the bigger picture.

What is the bigger picture, you might ask?

It’s simple: I am very lucky.

I am lucky because, despite the annoyance of my daily therapy regime, I am able to get up and live my life. I am able to go to work every day; I am able to enjoy the company of my friends and family. Although it is tough at times, I can go jogging and enjoy the outdoors. I can go for drinks with my friends and take walks with my girlfriend. I can enjoy the warmth of the sun and the beauty of the fall colours.

There have been times in my life when I have been unable to do these things. Times when climbing a flight of stairs or walking to the washroom were daunting and difficult tasks. Times when life did not exist outside of my hospital room.

Sure, my health is nowhere near perfect – in fact, my lung function has dropped nearly 20 per cent in the last year. However, I must force myself not to lose site of how lucky I truly am.

I am still breathing and still fighting.

I urge you to reassess your life. Consider your situation and ask yourself: how lucky am I?

Universal Health Care - The Bottom Line

On November 4, 2008, Barack Obama - a 47-year-old senator from Illinois – put an end to more than 200 years of history when he officially became the first elected African-American president of the United States. It is no secret that under the current system, millions of Americans go untreated and undiagnosed; sick and injured workers are routinely turned down by their insurance companies; and a countless number of Americans are forced into bankruptcy as a result of sky rocketing medical costs.

The annual cost of medical care for Cystic Fibrosis patients in 1996 averaged $13,300 and ranged from $6,200 among patients with mild disease to $43,300 among patients with severe disease. Of total costs, 47 per cent were from hospitalization, 18 per cent were from DNase (Pulmozyme), 12 per cent were from clinic visits, and 10 per cent were from outpatient antibiotics. When the observed costs were used to estimate the costs of medical care for the entire population of CF patients in the United States, these costs were estimated to be $314 million per year.

Today, nearly a year later, the passionate politician has become the subject of much public scorn - a large amount of it directly related to his vision for American health reform. As a CF patient, I know all too well the financial burdens that a life threatening illness can place on an individual. Granted, the Canadian health-care system has its challenges – delays at hospitals and walk in clinics have become the norm, not the exception.

Nevertheless, consider the following before criticizing the fundamentals of public healthcare. These findings underscore the need for strategies to ensure good health insurance coverage and high quality care for all individuals living with CF and with life threatening illnesses in general.

It is my opinion that only those faced with the reality of being completely and utterly dependant on a drug/medication/treatment can fully understand the true importance of universal health care. So before you form your opinion, please remember that one’s right to life should never be directly correlated to one's bank balance.

A New Spin on Fundraising

Last week Emily Schaller, a 27-year-old with Cystic Fibrosis, began a 2,000-mile journey aboard a Vespa scooter - riding from Chicago to Burbank, California, in her quest to raise funds and awareness for CF.

Schaller, who plans on capping off her journey by appearing on The Ellen DeGeneres Show, has appeared in Forbes magazine, The New York Times and was voted the 2009 Applebee's "National Real Hero".

Her fundraising expedition will pass through 14 cities and seven states, including Illinois, Iowa, Nebraska, Colorado, Utah, Nevada, and California.

Emily's trip will be captured on video and highlights posted on her Web site. Her ride will benefit the Cystic Fibrosis Foundation, the leading organization devoted to curing CF.

Click here to make your own personal donation to the Canadian Cystic Fibrosis Foundation.

The Common Cold – A Potential Cure For Cystic Fibrosis?

Article from Science Daily:

Scientists have worked for nearly two decades to perfect gene therapy for the treatment of Cystic Fibrosis. This summer, scientists from the University of North Carolina found what may be the most efficient way to deliver a corrected gene to lung cells collected from Cystic Fibrosis patients.

Using one of the viruses that causes common colds, the UNC scientists found that delivery of a corrected version of the CF gene to 25 percent of cells grown in a tissue culture model that resembles the lining of the human airways was sufficient to restore normal function back to the tissue.

"This is the first demonstration in which we've been able to execute delivery in an efficient manner," said Ray Pickles, Ph.D., associate professor of microbiology and immunology at the UNC Cystic Fibrosis Research and Treatment Center. "When you consider that in past gene therapy studies, the targeting efficiency has been somewhere around 0.1 percent of cells, you can see this is a giant leap forward."
"We discovered that if you take a virus that has evolved to infect the human airways, and you engineer a normal CFTR gene into it, you can use this virus to correct all of the hallmark CF features in the model system that we used," Pickles said. For instance, the experiment improved the cells' ability to hydrate and transport mucus secretions.

Now the researchers must work to ensure the safety of the delivery system. In a pleasant surprise, simply adding the CFTR gene to the virus significantly attenuated it, potentially reducing its ability to cause inflammation. But the scientists may need to alter the virus further.

"We haven't generated a vector that we can go out and give to patients now," Pickles said, "but these studies continue to convince us that a gene replacement therapy for CF patients will some day be available in the future."

Always Looking Up

After a solid month of frustration, things appear to be changing for the better.

In what has become a yearly ritual, I was once again rocked by a pretty severe lung infection this summer. I am assuming these reoccurring bouts are a result of seasonal changes, allergies, and the endless 16 hours days required to organize Friends For Life every July. Nevertheless, the inevitable “summertime drop” in lung function and FEVI have become an ongoing reality.

To further complicate the matter, the prednisone, which has done a fantastic job of controlling and minimizing my symptoms over the last two years, has become an increasing concern. The side effects of extended prednisone use vary in kind but not in severity. From osteoporosis, to diabetes, to liver and kidney failure, the drug leaves its mark on patients in many differing ways.

This week, after a particularly harsh month filled with lung, liver and kidney complications, I paid a visit to the medical team at St. Michael’s Hospital.

My doctors discovered that my lung function and FEV1 had in fact dropped significantly – almost 20 per cent. To further complicate things, blood tests confirmed that my kidney and liver levels were severely out of whack – a definite side effect of the high levels of prednisone.

The team decided that the best course of action was to immediately start me on a 14 day course of antibiotics. The equation is simple, stop the lung infection, reduce my reliance on the prednisone and, in turn, improve my kidney and liver function.

Well, I am happy to report that after a week of antibiotic treatment I seem to be feeling much better. The tightness and coughing have certainly eased up, and my prednisone levels have remained at the relatively low dose of 10-15mg a day.

As I mentioned earlier, things appear to be changing for the better.

Some Encouraging News

Some very encouraging news for prednisone users and CF patients courtesy of CTV:

Asthmatics with a severe form of the condition can reduce their use of steroids after injections of an experimental antibody, Ontario researchers have found.

Scientists at McMaster University and Hamilton's St. Joseph's Healthcare studied 20 patients who have asthma along with eosinophilia, an added condition that causes persistent inflammation of the airways due to high levels of white blood cells called eosinophils.

They gave them injections of an antibody called mepolizumab and then monitored their symptoms as they lowered their dosage of the steroid prednisone. After six months, the patients on mepolizumab had fewer asthma attacks compared to those given a placebo. That group saw their symptoms worsen as their prednisone dosage was reduced. The study is published in the New England Journal of Medicine.

The study's senior author, Dr. Paul O'Byrne, says mepolizumab works by blocking the production of eosinophils. "By preventing their production, we were able to improve asthma, reduce the need for prednisone and really show that eosinophils are important in causing asthma symptoms in these patients."

The 60,000 to 120,000 Canadians with eosinophilia typically take prednisone to manage their condition. But the steroid causes serious side effects such as bone loss and an increased risk of diabetes.

"Those who use more than 10 mg of prednisone a day for long periods of time put on weight, their blood pressure goes up, they could become diabetic, they have large mood swings, cataracts, glaucoma - the list is endless," lead author Dr. Parameswaran Nair told Canada AM.
Patients receiving mepolizumab "markedly reduced" their use of prednisone without their asthma getting any worse, O'Byrne said. Mepolizumab reduced the number of eosinophils to the normal range and kept them at that level for the entire study, O'Byrne said.
What's more, they noticed no side effects of mepolizumab, Nair reports. A second study of 61 patients published in the same issue of the NEJM by British researchers also showed mepolizumab therapy effectively treats patients with very severe eosinophilic asthma.

Professor Ian Pavord at the Institute for Lung Health said the results of his study suggested mepolizumab could cut severe asthma attacks by up to 50 per cent, as well as enabling patients to reduce their use of steroids. Mepolizumab is still considered an experimental drug and is currently not approved for use in Canada.

When Life Gives You Lemons

There are days when I truly am thankful for being affected by Cystic Fibrosis.

Case in point:

School has been rather hectic as of late. As April approaches, students throughout the GTA are shinning their shoes, editing the resumes and carefully crafting their portfolios in an effort to secure the ever elusive “internship.” Those of you who have experienced this sacred ritual at one point or another know all too well the stress and anxiety associated with the process.

To add to the distress, we – the students of the world – are presently applying for work in a recession. The current economic downturn has taken a severe toll on many business sectors. The reality is that most companies can’t afford to keep the employees they have, yet alone hire new ones.

So, as the rest of the aspiring work force grumbles and gripes, I take a quick moment to reflect. Sure, work is hard to come by these days; but people, you need to relax!

Tomorrow, the sun will rise, your alarm clock will sound, and life will go on.

It’s days like these when I truly am thankful for being affected by CF. Not only does the disease give me a unique perspective on the world; but it forces me to constantly analyze and re-analyze my position within it. The end result of this forced reflection is most often positive. Sure, things may be a tad bit frustrating at the moment. That’s life.

As far as I am concerned, if I am breathing and smiling – things are good. I feel privileged to be able to see the world in this light. So many people live life aimlessly; their minds immediately drawn to the ostensible negatives that surround them.

So the next time life gives you lemons:

1) make lemonade
2) add vodka
3) have a drink and chill out!

Blogging for a Purpose

Lock, load, aim, shoot…..blank.

Maybe I can’t perform under pressure, or maybe I just don’t have a strong enough passion for social media. Either way, I’m just not down with talking about the social media landscape today.

So let me start by apologizing to those of you who expect a well crafted “PR” related blog posting. Quite frankly, I’m not in the mood.

What makes my blog unique? I blog, I write, I rant, I rave; however, there is one thing that separates me from the pack.

Malcom Gladwell’s book, Outliers: The Story of Success, suggests that an individual must have 10,000 hours in a specific area to be considered an expert. Next March I will be celebrating my 24 birthday. Do the math; since my diagnosis I’ve been living with CF for over 166,440 hours. More accurately, I have been living with Cystic Fibrosis for over 210,240 hours; albeit, my diagnosis did not occur until I was 5-years-old.

What qualifies me to write about Cystic Fibrosis? It’s quite simple – I know the disease. More accurately, I live the disease day in and day out.

If 10,000 hours makes you an expert, then 200,000 + hours must make me an absolute connoisseur!

I urge you to take note of my musings; because, quite frankly, I write for a reason.

Reality Check

The Canadian Cystic Fibrosis Foundation recently released its latest advertising campaign – Drowning on the Inside. In many ways, the campaign is a form of shock advertising; the ads are controversial, disturbing and explicit. However, they are also a very accurate portrayal of what life with Cystic Fibrosis can sometimes feel like.

One video features a young child submerged in a pool of water, while another shows a child struggling to suck air through a straw.

What makes these ads so shocking?

Well, first of all, they are deliberately startling; they demonstrate the day-to-day realities of CF in a way that connects to almost anyone. Second, they all feature young children; a move that not only draws attention to the ads, but also accurately portrays the demographic most affected by the disease.

Some critics have argued that the new ad campaign is a blatant attempt by the CCFF to generate support for its cause through the inappropriate use of high impact scare tactics.

Ironically, these highly controversial ads are a breath of fresh air (no pun intended) for CF patients; most of whom often have a hard time describing how the disease truly affects them.

I would argue that the “Drowning on the Inside” campaign is no more explicit than any ad campaign released by M.A.D.D or Smoke Free Ontario. So for those of you who are offended by these ads, I ask you to reconsider the root of your disdain.

What makes these ads so shocking?

It’s not the images, the use of young actors, or the explicit analogies. These ads are shocking for one reason: they represent a truth that has never before been so accurately portrayed.


Note: To check out the rest of the “Drowning on the Inside” campaign, visit:

The Canadian Cystic Fibrosis Foudation

Bridging the Gap

Well it has certainly been a while since my last post. Between school, work, Friends For Life and the move into my new place, life has been pretty damn hectic lately! My inability to post was also directly related to the fact that I was stuck in a new house with no internet for nearly a week and a half – talk about feeling socially disconnected.

Nevertheless, the move is done and over with, the internet has been hooked up and life is beginning to regain some sense of normality again.

One of the first things I did after the Bell technician left my house was jump on Facebook to check a week’s worth of unread messages. After sifting through a plethora of evites, birthday notifications and embarrassing picture postings, I stumbled upon a message from a young lady who I did not recognize.

As I read on, I learned that she was a Cystic Fibrosis patient and that she had recently read an article that I had published in a quarterly CF publication called Circle of Friends.

The article was about a serious lung infection that I had suffered in the summer of 2007. From May until August, 2007, I battled a severe bacteria that dropped my lung function over 50 per cent and landed me in a hospital bed for a number of weeks. The article talked about the experience and how triathlon played a large role in my recuperation.

As it turned out, my new Facebook friend had stumbled upon the article and, as a fellow CFer, was inspired by what she read.

Her message talked about how she could relate to my article because she too was beginning to realize the potential limitations that CF can impose upon its victims. However, she also vowed to never let CF limit her ability to live a healthy, active, normal life.

Unfortunately, CF patients are not encouraged to associate with one another. This is because we often carry potentially harmful bacteria that can be fatal if transmitted to the lungs of other CF patients. Thus, in the interest of our health, we – as CFers – are encouraged to avoid contact with one another.

For year’s I have felt that this inability to socialize with other patients presents a real problem for those of us living with the disease. After all, who better understands the trials and tribulations of life with CF than a CF patient? I’ve often felt that, given the chance, I could make a difference in the life of other CF patients – just as they could make a difference in my life. Unfortunately, for as long as I can remember, the health risks associated with this kind of intimate contact made this dream rather unachievable.

That is, until now. The advent of social media and web 2.0 has transformed the way that people communicate and connect. For CF patients, social media represents a way in which we can share, bond and unite in the fight against Cystic Fibrosis.

I was happy that my writing had, in some small way, made a difference in someone’s life. However, I was absolutely thrilled about the fact that I was able to talk with another CF patient in a way that never would have been possible ten years prior.

So, for all of you who may question the importance of social media, I ask you to consider this example. The internet offers us, as a virtual community, an opportunity to come together, to connect and to develop relationships that simply could not exist otherwise.

Family Life

After reading a recent blog post about the elusive “f” word, I was inspired to publish my own piece about the irony of CF and family life. I feel that some people simply do not understand the grasp that CF has on my life. One of the areas that has been most affected by the disease is my personal life.

To most people, having a family is something that is taken for granted. It is a natural part of life, a right of passage if you will. However, to those of us living with CF, having a family represents something much more. It is a dream, a desire, an underlying notion that consumes our every decision. There is an inherent selfishness that saturates the idea. Abandonment, desertion, rejection; all of these idea’s comes into play when a CF patient decides to start a family. After all, we will, at some point in time, be forced to leave our loved ones behind. That being said, don’t we all – healthy or unhealthy – face the same predicament?

In my opinion, there is only one factor that should be considered when an individual decides to start a family: love. All other barriers, all other hurdles and all other difficulties can be overcome if love exists.

Part of living with CF is living with limitation; however, there are some things that we must not let the disease affect.

A Day in the Life

Cystic Fibrosis is embedded with ambiguity and misunderstanding. The myths and misinformation that surround the disease are abundant. As a CF patient I try my best to misspell these half-truths. In this post, I thought I would take a moment to share some of the ways that CF impacts my day-to-day life.

Most students roll out of bed with just enough time to make it to class. I, on the other hand, have been forced to adopt a more demanding morning routine. Every day, I am up at 6:00 a.m. to begin my daily battle with cystic fibrosis.

Each morning I awaken to a harsh reality. After 6 or 7 hours of sedentary inactivity, my lungs are almost always filled with a thick lining of mucus that makes it very difficult for me to breathe. This discomfort is one that every CF patient knows all too well.

I begin and end my day with 60 minutes of treatments: 30 minutes of PEP (positive expiratory pressure) mask therapy, a form of chest physiotherapy to help loosen the mucus in my lungs, and 30 minutes of inhaled medications through a nebulizer. Luckily for me, I am able to perform half of this therapy while in the car while on my way to school.

In addition to physiotherapy, I take pancreatic enzymes with every meal and snack to help me digest and absorb the nutrients in food. These, along with the many oral antibiotics and steroids that I must take, bring my total ingestion of pills to about 30 a day. Not to mention the variety of puffers I use in the morning and evening to help keep my airways open.

In total, my CF regime consumes between 2 – 3 hours of each day. Needless to say, as a CF patient you learn to prioritize and manage your time effectively.

The treatment protocol is certainly both strenuous and time consuming; however, it is a necessity, not an option. As a 23-year-old, I have come to accept that I owe my life to the medical treatments that I have received, and continue to receive on a daily basis. Quite frankly, fighting CF is a gigantic pain in my ass, but it is that fight that will keep me alive until the day that a cure is found.

Carleton University Students Continue to Shine

The Canadian Cystic Fibrosis Foundation (CCFF) applauds the decision of the Carleton University Students’ Association (CUSA) on Monday night to continue its long-standing partnership with Shinerama. Last week, the Association voted to cancel the annual fundraiser at Carleton University. After many students expressed their concern over the vote, a second motion to re-instate Shinerama was put forth. At yesterday’s meeting, the new motion was passed, setting the stage for another Shinerama campaign in 2009 at the university. “The students at Carleton are leaders in the fight against cystic fibrosis,” said Cathleen Morrison, Chief Executive Officer of the Canadian Cystic Fibrosis Foundation.

“We are delighted that CUSA chose to continue support for CF research and care. We look forward to working with Carleton students on a successful Shinerama 2009.”

Shinerama is Canada’s largest post-secondary fundraiser, involving students at approximately 65 university and college campuses across Canada, annually. It began in 1964 as a shoe-shining campaign, and has grown to include a wide variety of community and campus-based events under the Shinerama banner. Carleton University has participated in Shinerama for more than 25 years and has raised close to $1 million. This year alone, the school raised $40,000 in support of the work of the CCFF. “Shinerama is an excellent example of young Canadians helping other young Canadians,” added Morrison.


“We’re grateful to all students across the country who have helped to make great strides in the fight against cystic fibrosis.”


This Canada-wide student campaign celebrates its 45th anniversary in 2009. About CF and the Canadian Cystic Fibrosis Foundation Cystic fibrosis, which affects the lungs and the digestive system, is the most common, fatal, genetic disease affecting Canadian children and young adults. In the digestive tract, CF blocks the absorption of adequate nutrients from food. In the lungs, the effects of the disease are most devastating; and with time, respiratory problems become increasingly severe. Ultimately, most CF deaths are due to lung disease. The Canadian Cystic Fibrosis Foundation is a Canada-wide health charity, with 50 volunteer chapters, that funds CF research and care. In 2008, the Foundation is supporting more than 50 research projects, which are exploring all aspects of the CF puzzle; from investigating new methods of fighting infection and inflammation in the lungs, to finding new therapies that target the basic defect at a cellular level.


For more information, visit www.cysticfibrosis.ca.

Rant

Let me get one thing straight - I do appreciate social media. I believe that it facilitates interactive dialogue and intellectual stimulation; however, I have a bone to pick.

Too many of us are blogging for brownie points. Let's face it, we aren't all social media gurus. So why waste our time writing about something we really don't care about!?!?!?!

I write about CF becuase it consumes me. It makes me who I am...and I accept that. Cystic Fibrosis is MY story, however, we all have a story to tell.

That being said, take some initiative and tell it!

Blogging shouldn't be a means to an end. Regardless of what your future boss might tell you, writing shouldn't always be about a pay check. Instead, it should be an outlet. Write because you have something to share, something to dispute, something to challenge.

Remember, all great thinkers share one thing in common: the intrinsic ability to use words effectively. Writing is simply not effective if it is not from the heart.

Blogging should be about self observation, reflection and introspection. Challenge yourself to move away from convention. To hell with public opinion, education, religion, society.....write for a reason....write for yourself.

Multum in parvo -much from little.

Enjoy the simple pleasures that come from a well crafted rant.

We are so preoccupied with the cares and worries of others that we forget to acknowledge and appreciate life's most precious gifts.

A sunset, a smile, a friend, an undying love....these are the things that we should be writing about. And for the record, would it kill us to ditch the keyboard and pick up a pen?

Ink has become a lost art.

Pick up a Bic, pick up a piece of paper and begin. Write for yourself. Write for a reason.

As Aristotle once said, "We are what we repeatedly do. Excellence is not an act, but a habit."

Practice the art of strong writing....not the art of effective ass kissing.

Adrenalin Anyone?

It's December - just over three weeks until Christmas. My goal, as mentioned previously, is to be "prednisone free" by the 25th.

Prednisone is a steroidal anti-inflammatory. For me, the drug works to decrease inflammation in my lungs and airways. The problem is - it's terrible for you. Long term side effects include everything from osteoporosis to liver and kidney disease. So here I am, faced with a frustrating paradox.

What to do?

a) Feel great while popping prednisone like pez.
b)Feel like shit but be prednisone free.

I have decided that getting off the drug is the way to go. Unfortunately, I have been trying to wean off of it for nearly a year and a half. At the moment I am taking 12.5mg a day.

The biggest issue.....I'm a freakin zombie.

Prednisone gives you adrenalin; and, therefore, your adrenal glands go into hibernation while you are on the drug. As a result, your body stops producing adrenalin naturally. The problem: as I wean off the drug my body is literally adrenalin deprived.

Until my body decides to start pumping out adrenalin again I'll be living off coffee and cat naps.

Get Me Off This Freakin' Drug

Well folks, here I am a year-and-a-half after starting my frist course of prednisone. This has turned out to be a long ass weaning process.

My goal: to get off this freakin' drug by Christmas.

Current dosage: 20 mg

Current status: no weezing, coughing, gasping or crackling.....booooooya!

Tune in next week for another exciting update!