Sunday, January 20, 2013

CF Roundtable

Quarterly, I receive a newsletter called CF Roundtable. This newsletter is for adults with CF or adults who take care of others with the disease. My mom has been getting the Roundtable for while, but I only began looking at it a couple of years ago. The newsletter is enlightening, and it's an encouragement to me to read other CFers stories.

The Winter 2013 newsletter just came out this past weekend. While reading it, I was given such a desire to continue to live my life to the fullest every day, just like countless other people with CF are doing. One of my favorite articles from the winter edition is posted below. Chris summed up my feelings about living with a chronic illness pretty well. Take time to think about his article and examine your life. Are you living every day as if it were your last and maximizing your everyday life?


What does it mean to fight CF? This phrase, which I see and hear all the time, has lost its meaning for me. I can understand the desire to label CF as “enemy” and something that must be beaten. “Fighting CF” may be an excellent way to raise money for the development of new treatments without which I cannot “win” and for which I am deeply indebted. However, clinically speaking, I feel that “fighting” a long-term chronic illness such as CF is inherently unsustainable and contributes to serious problems such as anxiety and depression in the long term which may, likely, manifest in non-adherence and negative clinical outcomes.
While using language such as “fight” and “win” in instances of acute illness or the sudden onset of disease, such as cancer, may motivate or even scare individuals in the short term into treatment and adherence, is it helpful for individuals with condi- tions such as cystic fibrosis? I do not believe that it is. For example, I was diagnosed with CF at age 4. I have not lived a day without CF, and my very DNA is an expression of the condition. Who is the enemy? What am I trying to beat? How do I know if I “win”? Can I “win”? Cystic fibrosis is a progressive, chronic illness. There is no restoration to a pre-disease state. The best I can hope for is a maximization of my potential lung function at any one point-in-time. I am extremely adherent to the comprehensive treatment regimen that I have developed with my CF care team. Over the last ten years, my lung function has declined about 10 percent. Am I “losing”? Perhaps. Am I
not doing enough? As I sit writing with a neb cup in my mouth, flutter valve at my side and a PICC line in my arm, I think not. What about the individuals struggling to keep their PFTs in the 40s? Or facing lung trans- plant? Have they lost? Are they losing? Is it helpful to define their experiences in such terms, or does doing so con- tribute to levels of stress and fear, erode sense of self and contribute to continued decline? I am not a clinical researcher, but how can it not?
So, if I’m not fighting CF, what am I doing? I’m living with CF. Growing up with CF has given me a drive to live as fully as possible, and has helped me distill what is truly most important to me. I set attainable short- and long-term goals in many areas of my life that motivate me to adhere to my treatment regimen. If my health were to significantly decline, I know that while I could stand to lose the ability to do many of the things I love, I also know that nothing could take away what I have already done. 
 ----Chris Kvam

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