Jens' new favorite: shirtless hike pictures to show off his scar
The 18th
of each month causes us to reflect, give thanks, and celebrate. As time passes,
though, the “big ones” cause me to stop with more pause, more reflection, and
more celebration. Today is a “big one.” Two and half years ago, Jens emerged
from an OR at UPMC with two new lungs… two new organs that he wasn’t born with…
two new lungs that would change our lives forever.
Our rhythm these
days is easier, and yesterday, I found myself unfamiliar with seeing people
wearing oxygen, in wheelchairs, and in hospital beds because they struggled to
breathe. These sights had become so normal to me, and my fears eased when we
were in the midst of those struggles. I am grateful for peace and poise in
those times. I confidently walked the halls of UPMC. I knew my way around
Vanderbilt Hospital. Breathing treatments, IV meds, and seeing Jens in a
hospital bed were quite normal.
Bronch time! (11.18.16)
But something has
changed. That’s not our reality right now.
I don’t say this
boastfully, but matter-of-factly. Will it be our reality again in the future?
Statistics tell us yes.
Just the other
day, Jens and I were preparing for our appointments with his Pittsburgh
doctors. We do this before every appointment, to think about the things we want
to discuss, the things that have gone on, etc., as I take notes on my phone. I
presented the idea of “the future,” explaining to Jens that in all of our
pre-transplant education, they tell you stats about expected outcomes within
the first five years. These are the stats and numbers that matter most to the
transplant program, as they work to keep their numbers above the national
average, and thus keep their program in “good standing” and operational. Never
once have we felt that we are a statistic to UPMC or Pittsburgh, but as we near
the “halfway” point, it was sobering to us. What will happen? Will it matter if
we come back to UPMC? Will their “medical aggressiveness” (meaning the ways in
which they are proactive and anticipate) that we’ve come to value change?
We don’t know the
future, but I asked Jens’ team to look into their fictitious fortune teller
balls yesterday on some issues, as we try to lay out a plan for his continued
care. This is the planner (controller?) in me, but we also know that these
kinds of conversations are necessary, especially since we’re currently on a 6-month
rotation for when we get to see these doctors and this team that we respect.
Sunset on Folly Beach, where we were married (Oct. 2016)
Do we think about
these things on a daily basis? NO! I say that with excitement. We’re in a really
good place. As one of the pulmonologists said yesterday, “Right now, you’re
winning the game.” We feel like that most days, as Jens’ activity level is
arguably at an all-time high. Jens beats me in tennis most of our matches, and
I’m the one who has to forfeit the match because my knee feels funny. Jens is
the one who stays healthy, while I get laryngitis. Jens is the one winning our
FitBit challenges. Jens was the one pushing us to keep going on our recent
hikes in the mountains of North Carolina.
As for medical
stuff, his pill count is fairly low and fairly stable these days. He goes for
bloodwork most weeks, as we continue to monitor his cyclosporine (the
immunosuppressant he is now on- since May) and creatinine levels. He gets
headaches maybe once every other week, due to unknown reasons. He does an
inhalation, does PFTs, and gets his port flushed once a month at UNC.
We’re hoping that
he recovers quickly from today’s bronchoscopy and biopsy, with no fevers or
other factors that would hospitalize him. We’re hoping that we’ll receive good
results the next few weeks, showing no infection or rejection. We’re hoping
that he continues to stay well, with good white blood count levels throughout
flu season. We hope that he continues to stabilize/gain weight and muscle. We
hope that his PFTs (test measuring lung function) continue to defy expectations
as they did yesterday and get better with time. (He’s currently at 85% if you’re
wondering. His last one at UPMC was 78%.)
We’re hoping for
continued activity and good health, for community, for a spirit of gratitude, and
for many more “big ones” and “little ones” to celebrate on the 18th.
