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.