Quit Your Bitchin'

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 positivity – 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 re-accruing bacterial infections; I have become dependant 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 god damn 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.

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.

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.

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.

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.

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.

O Blog Posting Where Art Thou?

Let’s face it – it’s been a while. I’ve decided not to fill this posting with excuses or justification. The reality is very simple: life has been hellishly hectic as of late. After graduating from the CCC in April I began my internship at APEX Public Relations.

Nearly six month’s have passed since I first stepped foot in the office here on Bay Street. In that time I have had the opportunity to work with some fantastic people; both here at APEX and on the client side. I have also had the opportunity to work with some of the largest brands in Canada, including: Google, UPS, BMO, Corona, Nike, Samsung, Nintendo, Brooks Brothers, Energizer, George Brown College, Levi’s, Lasik MD, Rexall and Toronto Hydro. In a word, the last six months have been a whirlwind.

All that being said - I haven’t had much time for blogging.

Well, those of you (and there are only a few) who frequented this site once-upon-a-time, will be happy to know that I am back on the ban-wagon.

After all, what good is a career in communications if it interferes with my ability to communicate with the people that mean the most to me!

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.