I do not think I am alone when I admit that I get somewhat pissed off when family or friends, medical providers, science or statistics tells me what I supposedly can or can not do in regards to my CF.  I remember very clearly, in 2006 when I had decided to cycle over 2,000 miles from Canada to Key West, my father saying “You can’t do that!  Why would you do such a grueling thing?”  My only response was, “Keep telling me that I can’t, and that’s all the more reason I will.”

 

Stubbornness is possibly a common trait of people surviving CF.  Without it, we may subscribe to the expectations of others, who may not even know us, or what we as individuals are capable of. 

 

I was recently reminded of an NPR radio show tilted Batman that Erin shared in one of her earlier blog articles about the Power Of Expectations.  One of the case studies was on two groups of lab rats – one group labeled ‘VERY DUMB’ and the other group labeled ‘VERY SMART’.  The study found that the non-verbal cues and treatment of the two groups significantly impacted their performance, be it better or worse. 

 

Recently I saw a post on Facebook from a relatively uninformed young woman with CF that said “The average life expectancy of CF is 31.  I am 29. That means two more years of partying!” I was immediately annoyed by, and then felt sorry for her ignorance of not even knowing the correct current median life expectancy (early 40s), but more so, her resignation to what she had been convinced of by statistics (and incorrect ones at that). I wondered to myself what her reaction would have been if she were ‘pranked’ and told she had actually passed the actual life expectancy five years ago. Would her perspective on this ‘death sentence’ be changed?

 

Living with CF, our reaction to how perceptions from the ‘outside’ can influence our reactions on many levels.  For instance, just this week I was at the doctor’s office, and found myself instinctively correcting one of the providers from saying “WHEN you get sick” to “IF you get sick”. Are you really treating patients with expectation of getting sick, or the expectation of staying healthy?  Obviously statistical odds play into this, but if the lab rats in the story above teach us anything, wouldn't an optimistic attitude or choice of a positive direction be as equally powerful as assumptions based on pessimistic statistics? While I agree completely with my doctor’s comment yesterday that “Nothing good ever comes from negative thoughts”, I would ask rhetorically, “Do good things come from positive thoughts?” 

 

I find that our medical model and mindset is often REactive, and addressing problems after they arise, instead of being PROactive and finding strategies and techniques to prevent the problems from arising in the first place.

New chloride channeling technologies are the latest ground breaking advancements, with Vertex being the first to market such technologies. This medical approach seeks to prevent lung congestion from even occurring by properly hydrating mucus, as opposed to the historical approach of treating the congestion after it already exists. A public debate over cost is a testament to our society valuing reactive approaches, having no problem with the extraordinary costs of a two-week hospital stay, but will express outrage and stir up public controversy with similar costs for a whole year of a proactive approach with potential to reduce the need for, or possibly even eliminate hospitalization at all.

 

When I consider spending X amount of dollars for:

Option 1:  Two weeks of intensive medicine including IV’s, PICC lines, poking, prodding, not the best food, and ‘missing’ those days of everyday life that you do not get back, in order to recover from an intense exacerbation where significant emotional and physical toll are taken on the mind and body.

Or

Option 2:  Be healthy and not need to be hospitalized while living those two weeks to it’s fullest by enjoying life outside the hospital.

 

Is there really even a question up for debate?

I just don’t understand why insurance companies, whether private, state or federal, would even hesitate at covering an approach at preserving quality of life rather than trying to recover it. Is crisis mitigation really less effective and cost efficient than recovery? In my opinion, any politics that cause a person to unnecessarily suffer is beyond criminal. If the insurance company is going to spend this money in the end, how would it best be spent?

Putting controversy, politics and medical access aside, I also believe that a PROactive approach to my CF has helped me continue to maintain normal lung function at age 39. 

 

I hear from more and more people with CF that they are supplementing their traditional medical treatments with:

• Antioxidant foods (i.e., blueberries, acai juice, dark chocolate, black rice, etc.)
  

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• Beta-keratin foods (i.e., yellow foods like mangoes, bananas, carrots, etc.)
• Herbs & spices (i.e., ginger, curcumin/turmeric, garlic, ginger, milk-thistle, etc.) 
• Super foods (i.e. kale, wheat grass, spirulina, chia seeds, or powder blends like Amazing Grass, or juices like Naked)
• Sinus rinses & allergy sprays (i.e., NeilMed rinses 2-3x day, or sprays like Nasonex or Flonase)
• Exercise – especially cardio-vascular workouts and postural / core strengthening
• Mental and emotional training – counseling, meditation, exercise

I believe that all of these things combined contribute greatly to significantly improve our immune systems and help to prevent the colds, bugs, viruses and other junk in our environment (i.e., smog, second hand smoke, pollen, etc.) from triggering that stuffy nose, post nasal drip, sore throat and mild increase in chest congestion that can really turn into a prolonged exacerbation with CF, or even worse.

But when I hear a doctor still ask, after looking at my FEV-1 going up from 84% to 87% if I think all that stuff really helps….???  Seems a little naïve to me to think it doesn’t. 

 

I recognize that everyone with CF is different, and faces different struggles and challenges physically, financially and emotionally. But the fact of the matter is that the more you put into preserving and achieving health from as early as possible, the greater your chances are of not only surviving, but thriving with CF. 

It is encouraging to me to know that many physicians are starting to recognize the importance of the many factors beyond traditional medical regimen that can contribute to preserving health in life with CF. 

But I still believe that patients, parents medical providers and driving forces in the CF community, and beyond, can and should do more to foster a proactive model of living with CF and coexisting as long as possible, as opposed to the reactive fight against CF that can just become flat out exhausting.

 

I choose to be proactive in my life with CF.  I think this applies not only to those of us living with cystic fibrosis, but is also a consideration that applies to all aspects of life for all people with any disease, or without.  Everyone has problems, and no one's life is perfect. But how you deal with those problems is what defines who you are and how you strive to take control of your life or not.

 

 

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Brian Callanan is currently 39 years old, and was diagnosed with cystic fibrosis at birth.  He is the Founder and Executive Director of the CFLF, and practices an active lifestyle primarily through swimming and cycling on and off road, but also enjoys snowboarding, hiking, sailing and rock-climbing. You may email him directly at brian@cflf.org.