Saturday, July 27, 2013



Gallup/Clifton StrengthsFinder “Learners”: You love to learn…the outcome of the learning is less significant than the "getting there." 

It was roughly three years ago that my pulmonologist in Cincinnati first mentioned “transplant” after reviewing my declining pulmonary function tests.  The truth was that I had come to that revelation some time before.  After doing enough Google and PubMed searches, I knew that an FEV1 less than one liter per minute correlated with a significantly poor quality of life and was often pre-requisite for consideration of lung transplant.  Of course the gravity of that conclusion carried much more weight coming from my doctor. 
As lung transplant went from a clinical hypothetical to an ever more serious reality, I tried to soak up as much information as I could - from journal articles, United Network for Organ Sharing and Organ Procurement and Transplantation Network statistics, and the transplant centers themselves. 
I also found a trove of pre and post-transplant testimonies in the blogosphere.  Patients’ and families’ stories of determination and successful transplant outcomes have given me hope and optimism for my own future.  As I read blog after blog, I found a certain affinity and solidarity with young adults who have cystic fibrosis.  They, too, face transplant in the prime of their lives with homes mortgaged, marriages started, and careers advancing.  Yet one key difference with CF is that the disease is almost always diagnosed very early in life and often carries implications for health or lack thereof from a very young age.  Being sick, anticipating eventual transplant, and respecting the fragile balance of life and death are part of the lifelong hand that CF patients are dealt. And while the diagnosis and prognosis of CF are hardly enviable, that experience is different from my own.
To be a thirty-something accustomed to, even identified by his activity level, first as an athlete and runner, then as a physical therapist and energetic father, it felt so unfair to lose my endurance, my hobbies, my activities and my identity little by painful little.  While the progression of my disease has been relatively slow, my completely unexpected and indefinitively diagnosed reality is a unique affliction.
In my quest to learn about and better appreciate my circumstances, I did find another companion on this rarely travelled and far less chosen road of mine.  The story of my new friend Joyce has striking similarities to my own: a thirty-something nurse practitioner, with a loving spouse and growing family, whose endurance suddenly and inexplicably began to decline a few years ago.  She passed through a similar gauntlet of diagnostic tests, medical center work-ups and insurance runs-around only to find herself listing for lung transplant earlier this year.  With a few emails and some cathartic conversation shared a couple weeks ago, I am fortunate to have found a kindred ally.  I encourage you to read Joyce’s blog, maybe buy one of her Donate Life t-shirts and certainly include her in your thoughts and prayers.
This certainly isn’t how would have chosen to “get there,” but I am ever grateful for the opportunity to matriculate alongside an inspiring cohort of life-learners and life-yearners.  

1 comment:

  1. Hi Pete!
    Appreciate your posts and updates. Again I'm thankful we have been able to connect during this crazy roller coaster ride. It helps me to be able to communicate with others that understand our path. It also brings me some purpose during the hardships. Keep on keeping on!