The Median

Posted by: 
Brian Callanan

Last week I turned 38 years old.  This was one of the many landmarks in my growing older with CF where I was crossing what was once the median life expectancy for people living with CF.  

Ever since I was young enough to remember learning that there was such a thing as a median for the statistical average of CF lifespan, I wanted to surpass it.  However, every time I reached that number, it had again risen.  Believe me, NO COMPLAINTS HERE!!  But it was the carrot on the stick that has continued to dangle not far in front of me, as an ongoing goal.  

For a long time, I’ve asked myself ‘why’ though.  It’s not like when I hit that number, I intended to kick the bucket and be a statistic.  Just the opposite.  I have always been drawn to living past that number, and becoming somewhat of a statistical anomaly, amongst the many older people with CF that had successfully continued passed the median.  

In viewing this median as more of an opportunity for defiance, and increasing statistical deviance the longer I lived, I have always seen crossing that number as my way of proving otherwise in my vision of ‘Living Longer! and Living Stronger!’ with CF.

Nonetheless, with my goal of being a CF anomaly, crossing the median was something I always have kept my sights on, but couldn’t necessarily wait for - especially if they were going to keep raising it on me!  So I’ve sought other ways to deviate from number-driven expectation throughout my adult life.  

One way, is in stubbornly resisting the common clinical expectation of lung function to decrease over time with the progressive nature of CF.  TRUE! CF is progressive, and along with the other complications, I and many others face CF Related Diabetes (CFRD),  high blood pressure, reflux, lifetime injuries of sprains, rotator cuff tears, broken vertebra creating 20 years of chronic back pain, hearing damage, depression, anxiety, etc. (yes, I AM a mess!).   No one really told me until later in the game that not only were my lungs likely to decline, but all these other health factors would arise too!  Sheesh!  

Regardless, my striving to be an anomaly has created a focus on maintaining, if not increasing the lung function.  I remember as a child, having FEV-1 numbers in the mid to high 90th percentiles.  As I entered high school, and mostly in college, those numbers dropped, as expected, into the mid to low 80’s.  Despite that period of my life having less than ideal compliance with chest physical therapy (CPT) and medications, my emotional and social passions in outdoor activities seemed to be holding my numbers rather steady.  But the realization of what my lung function numbers could be if I really combined as much CPT with as much exercise as possible, gave me this goal of “Let’s see if I can actually get those numbers back to where they used to be.”  

Years after college, in 2006, while starting the CFLF, I had the opportunity to ride my bicycle from the Canadian border of Maine to Key West, Florida.  While over the

five weeks of intensive riding I did see some increase, it was not the big jump I had hoped for.  So I then realized, amidst some heat exhaustion, the importance of rest.  So this new recipe of exercise, CPT, AND rest has become the most successful for me.  Over the past few years, I have had amazing bursts of pushing my FEV-1 scores from my personally acceptable baseline of 84-87th percentile, to 90th, and even 93rd percentile.  So I now find it feasible to put 100th percentile on my road to being an anomaly, and we will see if I hit that, or the median first.  

In conclusion, I need to recognize the amazing importance of all the hundreds of millions, if not billions of dollars, and the years and uncountable man hours that have gone into the research and technology that has enabled that median to keep rising!  Without it, all people with CF would be singing a very different tune.  

My dream with the CFLF is to help as many people as possible not only to also reach the median, but to blow right past it with full force.  Medications and treatments are certainly a primary key, but I believe the statistics of CF could still forecast such greater outcomes with maximal compliance AND exercise.  I often preach that airway clearance is half of the lung battle, and airway expansion is the other half.  I believe that keeping lung tissue flexible and elastic, along with optimal blood flow is as critical to lung health as being free of congestion, and exercise can help greatly with that.  

I also recognize that the psychological and emotional pains of living with any chronic illness can significantly detract from determination, hope and most importantly, compliance with treatments.  Again, my personal experience is that exercise can help greatly with that invisible component of living with CF, and I hope that the CFLF, as a supplement to the amazing medical advancements, can keep that median pushing further and further along.

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