After much thought, prayer and discernment, Eileen and I have decided to pursue listing for lung transplantation at Barnes Jewish Hospital in St. Louis. We arrived at this decision for many reasons, but the strongest reasons were these:
June was awful. Between the lung transplant work-up at Barnes and three admissions to Good Samaritan Hospital in Cincinnati, I spent nearly half of the month in a hospital. Of the four 911 calls we made from June 2nd to July 4th, the second one on June 19th was the scariest. As per usual it happened late in the evening, during my pre-bedtime breathing treatment. My arms and legs went cold, my face ashen, and I quickly lost consciousness. My blood gas levels were off the charts (PCO2 of 97 and pH of 7.23 for those in healthcare) and required a BiPAP machine in the ER to help me expel enough carbon dioxide from my body to make room for more oxygen. After several nights in the hospital (including a “romantic” 31st Birthday with my lovely wife on June 22nd), I was discharged on June 23rd only to return later that night with another more mild asthma attack. (I actually remember all the details on that ambulance ride!)
I had a pretty nasty cough through that spell and I’m pretty sure there was some sort of infectious factor at play. I certainly haven’t bounced back from these hospitalizations as quickly as I have I in the past. I was exhausted and it took me a while to get back to my work at the Mount. I remain on oxygen for any activity at all, except when absolutely sitting still. I’ve struggled mentally with anxiety and panic attacks about my asthma and depression over my declining function and the sobering lung transplant statistics. In short, my function at the start of July is measurably lower than it was at the start of June.
In the face of the sub-optimal transplant outcomes and expectations, I began to realize that my odds with these ever-more-severe exacerbations may not be much better. Apart from the lousy quality of life running back and forth the hospital, I had to come face to face with the reality that there might be a back to the hospital without a future forth.
The medical advice given for lung transplant has always been “wait as long as you can,” “get everything out of your own lungs” and “every day with your own lungs is one less day starting your post-transplant clock.” I had imagined post-transplant life as this stopwatch with some unknown duration on its face. I had calculated every day, week, month or year that I put off transplant as time added to my stopwatch. But I realized there were a couple of fallacies in this metaphor.
First, if one of these asthma attacks means I don’t make it to transplant, then the start button never gets pressed, no matter how much time I have banked. Second, there are so many variables with transplant - some known and understood and some unknown and mysterious. Just because I might wait a week, three months or two years it is not a statistical guarantee of a longer post-transplant survival. It could be just as well that I am transplanted sooner and for variables about that donor, that surgical team on call, that available OR and many, many inexplicable others, my life carries on far longer than if I wait. The reality is that none of us know and nor can we calculate how long our stopwatch has been wound.
And so our family moves onward toward transplant with faith leading us to the right decision, the right time in the grace of this moment (kairos > chronos), and the right place.