The transplant chronicles of a journalist, bibliophile, epistemophiliac and homo sapien.
Now that I have taken a medical leave from my newspaper job in the Knoxville area and relocated to Pittsburgh, in hopes of getting a lung transplant at some point in the future, I thought this would be an interesting opportunity — or, if nothing else, a way to kill time — to record some of my unfiltered thoughts and observations as I go through this process in a way that might not have been possible in print. If you are reading about me here for the first time, you can get most of the background on what I am about to say from this newspaper column and from this post.
While the immediate aim of this blog series is to write down my ruminations in the days, weeks and months leading up to the transplant — and probably thereafter, if there is a thereafter — I will also roll back time a bit and reflect on what it has been like to deal with this illness through my teens, 20s and 30s — in other words, what should have been, and perhaps in an alternate universe, what would have been, the prime years of my life. But this is not, and I will not allow it to be, a sob story of loss and regret because believe you me, given the limitations, I have squeezed a hell of a lot of life out of 39 years.
To make a long story short for the benefit of those who already know the basic details, I was born with severe combined immunodeficiency and spent 3 1/2 years in a sterile hospital room in New York City, eventually undergoing an experimental mismatched bone marrow transplant in the early 1980s, which gave me a functional, if somewhat irregular, immune system. I developed COPD in subsequent years, and although doctors have some theories as to what might have damaged my lungs, no one seems to have any concrete answers.
When I was young, doctors simply thought I had asthma and would have to write me a “pass” so I would not be forced to run as much as other children during physical education classes. I was conclusively diagnosed with COPD in high school, and as such, I more or less knew that a lung transplant was coming at some point down the road, but I did not know the time or the place. Now, as I write this seven stories up at Family House University Place in the medical district near the University of Pittsburgh Medical Center, those two questions have been narrowed considerably.
I began breathing medicines shortly after the diagnosis, so even as I was getting ready to embark on new life trajectories after high school and again after college, my lung capacity was half or less than that of healthy human beings, so while the degeneration has been a glacial process over these two decades since graduating from high school, it has nonetheless been inevitable. Ironically enough, I began a career in sports writing in 2005, covering football, baseball, track and field and other activities that I could not have participated in myself. 1
After a short time in sports, I moved over to the news department and worked as a news editor for about nine years at publications in Northeast Georgia and East Tennessee and one year as a night editor in Upstate, South Carolina. Not until about five months into my most recent tenure at the newspaper in Tennessee, when a doctor said I needed to go on oxygen at night all the time, did I realize that the disease was starting to catch up with me.
In previous years while covering football and basketball games and other events, I would certainly have to take it slow at times walking up hills and climbing bleachers, etc., but other than the usual maintenance medications, I didn’t have any oxygen requirements until the summer of 2012 when I learned, through what is known as a sleep study, that my O2 saturation levels, unbeknownst to me, had been dropping into the low 80s at night. Any level below 88 percent can, over time, damage the heart and eventually lead to heart failure. Who knows how long before 2012 my nighttime O2 saturation level was dipping below this mark?
In any case, even though I wasn’t ordered to wear oxygen around the clock at this time, strapping on the tube before going to bed that hot summer night for the first time was, pardon the pun, deflating, and was the first step in the long and winding road that led me to the doors of UPMC.
Coming up in post No. 2: The insurance industry as an evil empire.
- As an aside, I did play defense on a youth soccer team as a child, and as I recall, picked up a league championship one year. I also had aspirations to play youth baseball, but I was not able to play because of my small stature, but the local league, for whatever reason, would not provide me with an exemption to allow me to play in a lower age bracket.