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.