Monday, October 6, 2014

Monday afternoon not on La Grande Jattte.

Being part of a clinical trial or study is an opportunity to include  one’s own experience in what may be considered a pointillist rendition of disease and management plans that can produce a nuanced picture of the effect of specific medical models and the processes being used, unused or discarded to identify and treat the conditions being portrayed. 

The success or failure of an evaluation or treatment option does not stand or fall alone or perch only on a two dimensional x/y graph model but it is at its most comprehensive  when seen with the added dimensions of predicted and observed outcomes; both in real time and as as reported over time following the initial trial. This creates a picture out of the contradictory and complementary interplay of results laid down like spots of paint on a canvas.

Having made that assertion, it remains the individual points of color in the painting and the individual questions and quantifiable results in many many individual study experiences which result in the visual coherence that provides both the outline and detail of the “big picture.” 

This is the place at which I want to emphasize to individuals with COPD (still unaware perhaps that their particular speck of color is important and will change over time, always influencing the picture) the idea that they matter. 

I participated in one study of treatment options for the psychosomatic response to the COPD diagnosis and experience. I have been evaluated and turned away from Lung Volume Reduction Surgery and excused from involvement in a clinical trial for a non-invasive lung volume reduction medical procedure, either of which could have radically changed the nature of my condition for better (or for worse). Each time, the information gathered and the data added from my personal situation influenced the whole picture of COPD, as seen around the world.  Even though I recognized early on that this was bigger than me, I was disappointed - very seriously disappointed to be turned down for participation in the lung volume reduction study that I thought might change my life. Ironically that study was scrapped, before the first person was given the procedure (after they disqualified me) and the company is not even still doing business under the name used in that study any where that I could find in a cursory on-line search. 

I have currently been accepted for initial screening in my second try for a lung volume reduction procedure trial evaluating another treatment option for folks with COPD and other debilitating lung diseases and conditions. It’s a big picture.  

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