Wednesday, September 19, 2012

transplant gym

It is strange to be back at the transplant gym. We hear a lot of stories. We share our stories. There is a lot of community-building and a transplant "family" is formed. There are even a few people from James' pre-transplant days. Most of them are recent transplants. (James was at the transplant gym for 3 months post-transplant, and it has been 16 months since his first double-lung transplant. These individuals would have been on the waiting list for longer than a year).
James at the Gym in June 2011 (1 month post-transplant)
There are very few young adults in the gym. The vast majority of elderly seniors awaiting lung transplant. (The stories of COPD and emphysema are painful to hear. Many of these individuals are only a few years younger that my Bubie would have been, but I do not believe she would have been a candidate for lung transplant. She also had advanced lung cancer that resulted in the removal of a third of her lungs a few years prior to her death).

Today, James and I met another young man with Cystic Fibrosis (from across the room). We were not able to talk with him, because the risk of cross-contamination and shared infection is high among individuals with CF. We are required to remain on separate sides of the room. The transplant gym makes all efforts to create separate schedules for individuals with CF. 

It was clear that this young man is pre-transplant. His cough was reminiscent of James' pre-transplant days. There were hours and hours spent coughing up phlegm and sputum in the morning (and throughout the rest of the day). James had to exercise with a garbage beside him. We do not miss these days. It was hard for both of us to hear, but at the same time, I have a hard time remembering James' constant cough. This is the definition of being blinded by love. The same can be said for James' malnourishment. He was 90lbs (and all bones). Now, I cannot look at photographs from our first year together without feeling nauseous. He was dying (and close to death in those last few months). I don't think I really let myself feel or know the extent of his illness. We just focused on a single day at a time. We are doing that again, but I cannot lie to myself. I cannot deny the gravity of our circumstances. We have been here before, and it is all too familiar.

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