A "big one"- 2.5 years!

Jens' new favorite: shirtless hike pictures to show off his scar

The 18^th 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.

6:21

Have you ever had an experience in your life where you know the exact date and time that changes your life forever? For Jens and me, that moment is 6:21 AM on Saturday, May 17, 2014. That's when "the call" came through for lungs. It was not until about 24 hours later that I met with Dr. D'Cunha and Dr. Odell to hear about the outcome of the surgery. Those 24 hours changed our lives.

6:21 AM

I get emotional around the 17th and 18th of every month. For those of you who don't know, Jens got "the call" on May 17, 2014 and went into surgery that night; he came out of surgery with two new lungs on May 18, 2014. It has been our "tradition" to celebrate the 17th with a day of remembrance and special prayers for the donor family, knowing that that is a date that will remain on their hearts as the day their loved one lost their life. We celebrate the 18th as a day of thanksgiving, with special intentions to do something more active than the norm on that day to celebrate and utilize this gift of life by doing something Jens wasn't able to do/do easily prior to the transplant.

Jens chasing our nephew in Florida

It's a funny feeling this year. We've lived in North Carolina just about a year now. We have established a wonderful group of friends here; it is incredibly odd to me that, though they love us and want to know our Story, they don't really know what it was like for Jens prior to transplant. For them, they know the Jens who suffered a broken leg from one of my 4th graders, or the Jens that tweaked a disc in his back by reaching for a cookie. They only know the Jens that has had to deal with these "comical" (yet inconvenient) injuries. And, then I think of friends and family who watched Jens decline for many years, adding more breathing treatments and machines to his regimen, witnessing his increasing difficulty to breathe or to finish a sentence without coughing. Those people don't know the freedom Jens has experienced in the past 2 years, and they are always shocked when they see him do something that is very much ordinary now. (They are also shocked when they witness him eat so little comparatively now, post-Nissen surgery.)

Post-Nissen surgery

These moments of our lives that blend "old and new" hit me with weird, random things sometimes. I was talking to Jens recently while he was visiting his Mom in Philly. I caught myself just before I asked him on the phone, "Did you finish your [breathing] treatment yet?" Prior to transplant, many nights of our relationship were spent over the phone, as his return to Nashville was inevitably delayed by needing to stay in Philly to get some medical care there or waiting to be well enough to make the trip back to Nashville.

We sang a song at church this past Sunday, a song that I remember being brought to tears while hearing sung at our church in Nashville. The lines were so bitter to me back then, thinking of how death might be a very real, very near event. "Oh death, where is your sting?" I knew where the sting was. It was in the breathless moments of witnessing struggle, the moments when I didn't know if the coughing would cease. I couldn't even bring myself to sing those lyrics. I knew that sting. I knew. I tried to cling to the hope of healing- not an earthly healing, but knowing that God would make Jens new again in Heaven.

Life post-transplant is beautiful and freeing. It means golfing, playing with our nephews, coaching baseball, not being defined by breathing treatments, achieving your lifelong goal of attending all 30 Major League Baseball stadiums.

Coaching baseball at a local school

It is not always easy. What an absolute gift to know that we're tasting that side of Eternity every time we go for a walk, with every stair Jens climbs, on every plane Jens can easily fly on now, with every grocery bag Jens can take in from the car, with every step, with every breath. We know, we see, we experience the goodness of His healing. We choose to remember this incredible Story that we can call ours.

By no means are we naive to think that all of our problems are solved. It is very true what they say: With transplant, you're trading one set of problems for another. Jens still has problems and issues. And there are days that are short on hope, because it is just plain hard to live in the reality that no matter how hard he works or stays on top of his meds or complies with every doctor's prescription, that he still has an incurable disease. And, chances are, with transplant, he's going to gain some others along the way too.

Today, marking 2 years since that life-changing phone call for that life-changing surgery, we are choosing to give thanks, to enjoy today, and to dare to dream and do the impossible. Thank you for joining in the celebration and remembrance with us. We do this with great hope, knowing that whatever our Story holds, we will never walk alone.

COTAforJensH.com is now Lungs4Jens.blogspot.com

COTAforJensH.com is now Lungs4Jens.blogspot.com

Since we officially begain our partnership with COTA two years ago, we have decided to not renew our website domain with them (www.cotaforjensh.com). We are still a part of the COTA family. All blog posts and information was transferred to this page, but we have not re-formatted or added the pictures to the blog posts. 

For additional information on our story, we encourage you to visit our Facebook page: www.facebook.com/lungs4jens