Haiku Transplant Story

My class has been writing poetry today, and we wrote haiku poetry this morning. The librarian led the lesson, giving me some time to be more of a learner/writer. She asked us to brainstorm a topic and words associated with that topic. Heavy on my mind today was the donor family, and that fateful day, 3 years ago, when we got "the call" for Jens' new lungs. Many of you know our story (if you don't, go back a few posts, and you'll find it), so we ask you to join us each month, each year on the 17th to remember the donor family. The timing is not lost on us, and we believe it was one of the good gifts of God's timing that we have two special days to commemorate and, in a way, compartmentalize our feelings and emotions about this life-changing piece of our story.

Inspired by the writing I did with my students today, here's a snippet of our transplant journey, as told through haikus. (*If I messed up on any of the 5/7/5 syllable structures, please let me know!)

Our first Durham Bulls game of the 2017 season, watching a few Vanderbilt friends play.

Lungs 4 Jens, as told through Haiku:

(cough) Breathing treatments
IV (cough) medicines (cough)
Cystic Fibrosis

exploring transplant
get the most of out old lungs
exiting Nashville

working with COTA
raising funds and Lungs 4 Jens
telling our story

City of Bridges
black and gold on Squirrel Hill
crossing to new life

Saturday morning
ring-ring-ring 412 number
with the gift of life

frantic, rushed, scared
UPMC waiting room
hurry up and wait

passing time slowly
Luigi brought paperwork
signature... go time

remember with us
the seventeenth of each month
donor family

the new lungs are in
medical talk with surgeons
everything looks good

out of surgery
not a sprint, a marathon
now recovery

into ICU
wanting extubation now
breathing on his own

ready for 9-D
nurses became family
solid foods, not yet

surgeon D'Cunha
wired sternum in new way
"You look good," he says

lung function expands
normal range (in September)
no more oxygen

Doctor Pilewski
trusted pulmonologist
"Keep up the good work!"

daily hallway walks
getting stronger day-by-day
goal is eighteen stairs

isolation room
tuberculosis, they think
tests are negative

a month on the floor
chest tubes out, ready to walk more
we want to go home

stay away from germs
immuno-suppressed organs
double-lung transplant

celebrate each month
miles turn to kilometers
winters are cold here

5-18-14
marks time and activity
lungaversary

happy, healthy life
pills, bloodwork, few appointments
lots of baseball games

life three years later
Durham, North Carolina
coaches Cavs Baseball

Pittsburgh, special place
grateful, thankful, living well
inhale... exhale... breathe

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

Lately... We get to...

(Originally published on 2/3/15 on cotaforjensh.com)

Sorry for the long absence in blogging. I think while we enjoy having everyone’s support, it’s tough to have our whole lives out there for all to see/read about all the time. Forgive us.

Jens carving our turkey on Thanksgiving 2014. 

The views from Mt. Washington in December with childhood buddy, Chris Reagh. 

We are surviving our first Pittsburgh winter! While we weren’t so thrilled about our neighbor Phil’s prediction of more winter to come, we have been very thankful that- SO FAR- this winter hasn’t been as bad as last year. I (Abby) am especially thankful for the investment I made in a good pair of snow boots, a warm winter jacket, and an awesome snow brush! Pittsburgh essentials! We went for a walk on the first nice snow in January, and Jens commented, “It’s so nice to be able to be out here for a longer period of time and to be able to breathe.” The past few winters have been very cold and were very hard on Jens’ lungs. With his lower capacity to breathe, getting bundled to go out in colder temperatures was exhausting- even before his lungs breathed in the frigid air. I think it’s going to be amazing to continue to experience these little changes, little gifts! 

Basketball at the neighborhood court in the snow. 

So, how’s he doing? I have failed to post about the super awesome “abdominal binder” that Jens gets to wear as sort of a cast for his sternum. He began wearing this on November 7, as it was waiting for us on our doorstep when he returned home from his November bronchoscophy. Two sidenotes: 1. Jens doesn’t recommend starting to wear a “cast” the day you’ve had a procedure done, and 2. All of the results from that bronch. came back negative- showing no infection or rejection! Yay! 

Modeling the binder he wears over a Dri-Fit, and under another shirt every day. 

Jens has been experiencing chest discomfort and pain since he came home from the hospital in June. I think I’ve mentioned before the irritation he felt with the wires, etc. As he’s gained (healthy) weight and muscle, the pain was still there. The transplant surgeon (Dr. D’Cunha) ordered this “abdominal binder” to be worn around his chest to stabilize the bones- the best casting you can do for something like that. Jens also had an MRI in December to make sure that the bones were fusing properly, and that the surgeon wasn’t missing anything abnormal with that. Those results came back positively, and he just appears to have a longer time for his bones to heal with all of the immunosuppressant drugs. Dr. D’Cunha ordered Jens to wear the binder an additional 3 months (4 total), and that we’d revisit it then. Jens has seen the binder help to stabilize and to alleviate discomfort, but it’s not 100% yet. Check back in March! 

Testing his limits on a rare 50-degree January day in Pittsburgh, while celebrating 8 months! 

In November, you’ll remember that Jens’ white blood counts were consistently low and did not seem to respond to the typical “boosts.” In December, they decided to be a little more aggressive with the neupogen doses and other treatments, to minimize Jens’ risk of getting sick or getting an infection. We’ve tread very lightly this flu season, as Jens has not been able to get a flu shot due to these low counts. Thankfully, they came up for 2 consecutive weeks, enough that the doctors allowed us to briefly travel to Texas to be with family on the conditions that, a.) he would continue to get weekly blood work, and b.) we would seek medical attention and/or return to Pittsburgh immediately if something was off. We were excited to leave, but we did so with some trepidation, as we knew we’d be around more people than we have been exposed to in Pittsburgh. (We had a great time, and it was so nice to get to be around loved ones for the holidays!) 

Once we got back to Pittsburgh in January, we began to see his white blood counts drop again. They have ordered more aggressive doses of neupogen to try to help boost counts, and Jens has an appointment with a hematologist this week to see if he can provide any additional insight as to why this is continuing to happen. At this point in the recovery process, they did not anticipate that Jens would still need to get blood work done on a weekly basis. (This is typically a monthly thing at this point.) Along with the blood work results comes last-minute appointments to go in for the neupogen (or other) treatments at the hospitals. One of the transplant coordinators typically calls Jens on Monday afternoons to go over the results of that morning’s labs. If treatment is needed, she’s usually ready to tell us when that’s going to happen. It’s usually scheduled for Tuesday, Wednesday, and Thursday at 11 AM each day. We’ve come a long way to have a “usual” schedule for that, as the first few months we’d get all sorts of crazy days/times. 

It can be frustrating that these medical issues still rule our time and plan our days, and we have to continue to think about where Jens was about 8.5 months ago. I’ve had to catch myself a few times and remind myself: “Be thankful that you’re getting dressed and ready today to take him to _______, instead of spending the day at the hospital with him.” Those thoughts creep in, and we can become ungrateful for our current situation. Is it frustrating? At times, yes. Is it inconvenient? Yes! Anyone who battles any sort of chronic disease often longs for what’s “normal.” We’ve adjusted, flexed, canceled, and more the past few years because of health stuff. We don’t feel “normal” most days in Pittsburgh because we perceive “normal,” as someone who doesn’t have to visit the hospital every week. I’m reminded of some wisdom from a dear friend: UGET2.

We get to have blood drawn/take Jens to get blood work (instead of the ER!).

We get to sanitize the “touched surfaces” in our home today to help keep us healthy.

We get to take walks in the snow.

We get to enjoy a slower pace of life.

We get to put our lives out there because we have a wonderful community of supporters who care and want to know what’s going on.

We get to work on our relationship and enjoy time together every day.

We get to BREATHE!

We get to…

We got to... see our beloved Preds beat the hometown Penguins 4-0! 

 (More about the “UGET2” mindset from the wise Emily Huff: http://celebrate-2day.blogspot.com/2013/04/uget2.html) 

Hiking with the Huffs to celebrate 7 months in December!

The Good and the Not-So-Good... Plus #Giving Tuesday

(Originally published on 11/25/14 on cotaforjensh.com)

The transplant office is really good about scheduling the routine bronchoscopies far in advance. We knew in August that he would have a bronch. the first Friday in November. We thought this was good timing, as it would give him a few months off of the bronchs, but also would be before any holiday travel that we might be cleared to do. 

Since that time, we’ve fielded questions from family like, “What are you doing for Thanksgiving?” Our response was always the same, “It will depend on the results of his bronch. at the beginning of November.” Since it takes about a month to get all of the cultures and results back, we thought that this was the most appropriate answer. 

The good news: Any of the cultures or results that have come back so far have been negative for any rejection or infection. We’re still waiting on some. 

More good news came last week when Dr. Pilewski told Jens that he could hold off on doing breathing treatments for now! Jens has been nebulize-free for a few days now, and it still is not routine for him to not do a breathing treatment when he wakes up or while watching TV at night. There’s something comforting about that for him, but he is definitely glad to have a little more time back! 

No, no, no! No breathing treatments today! 

However, even with this good news, his routine bloodwork on Mondays has shown a decrease in his white blood cell counts (WBC) the past few weeks. He’s now done the neupagen series of shots three consecutive weeks. He also had an inhaled treatment that was supposed to boost the counts. The doctors have taken him off different combinations of meds to see if any of the drugs are interfering. 

And yesterday, when his Monday bloodwork was back, they called again to tell him that his WBC was still low. A low WBC makes him very susceptible to get an infection. 

With that news, it is official that we’re staying put in Pittsburgh for Thanksgiving. We’ll do our best to cook the traditional fare for the two of us, and I’m sure Jens will enjoy the abundance of food. Thanksgiving must be a Predinsone patient’s favorite holiday! (Prednisone makes Jens very hungry!) 

We have hope that they will determine the cause of the low WBC in order to give us clearance for a short time so that we can spend time with family and friends in the coming months to celebrate the holidays. 

PS- You may have seen #GivingTuesday attached to some of our recent posts. Check out what #GivingTuesday is: https://www.youtube.com/watch?v=9QKdgMdpcGY&app=desktop 

Consider giving to COTA in honor of Jens next Tuesday to help us reach our fundraising goal, and help us by spreading the word to your followers, friends, and family!

"The Call": a look back at May 17, 2014

(Originally published on 11/18/14 on cotaforjensh.com)

After we moved to Pittsburgh on April 16, 2014, we enjoyed a slower pace of life while waiting for the call. We were lucky, as his health actually improved in the month we were waiting. We attribute much of this to the removal of some of our stressors. I (Abby) was no longer teaching, which alleviates stress on it’s own. The two weeks prior to moving, I was working 18-hour days trying to finish what I needed to with my class, grading over 20 assignments so that half of their grades came from me rather than a sub, writing 7 weeks of lesson plans… all while packing, trying to savor the last few days in a city we’d lived in for 10 years, and saying goodbye to the community of supporters in Nashville. Oh yeah, Jens still had his normal health issues and was recovering from a brief hospital stay at the end of March. 

Once we got to Pittsburgh, we were able to slow down. I suddenly had time to read for fun! Some of the biggest challenges were navigating the roads and the new grocery store. We had to switch medical equipment and home care to local offices in Pittsburgh. Of course, we were always tense when we got calls from unknown 412 numbers; we never knew if it was “the call.” Jens started pulmonary rehab at UPMC, where he completed about 3 weeks of work before getting the call. He was feeling much better, and was even able to come off of IV meds for about 2 weeks; he had basically been on them consistently since Thanksgiving. All in all, Jens was in the best possible shape going into the transplant. 

Jens working out at pulmonary rehab on 5/15/14. 

The night before “the call,” I remember finishing my library book. I had a fleeting thought of, “Oh great. He’ll probably get the call tonight before I have a chance to make it back to the library.” I didn’t take the thought too seriously, and fell asleep as if everything were normal. ----- Jens got "the call" on Saturday, May 17 at 6:21 AM. We don't get many calls at odd hours, so I suspected this was it when I heard his phone ring. He pointed to the phone and said "Lungs!" as he listened. He was told that he was the “back up” to two cases. UPMC frequently calls “back ups,” as that allows them to determine the recipient after further testing of the organs. 

He was told to do his breathing treatments and shower with Hibiclens (preoperative) soap. Jens was NPO, and not allowed to eat anything or have anything to drink. Jens was definitely stressed and frazzled as he went about his to do list to prepare to head to the hospital. It was a weird feeling for me, not knowing how to best support him. After he hung up from the call, he kind of paced back and forth into the room, as if he was looking for something, yet couldn’t remember what. He was so focused on what he had to do prepare that he forgot all about me. I recall blocking his path, as in that moment, I just wanted to give him a hug and reassure him everything would be okay. 

We arrived at UPMC Presbyterian around 8:30 AM. (We were told to not rush to the hospital after they called. They wanted Jens to completed the necessary things before coming in.) We were told to go through the ER, since it was a weekend. Jens had the necessary vitals taken, and he was ushered back into one of the ER rooms. We remember this being an odd “holding place,” as the ER nurses and staff weren’t exactly sure what was going on either. At one point, we asked them to contact the Transplant Office to make sure that they knew we were there and ready. We definitely didn’t want to be passed up because they didn’t know where we were. (Which was a silly thought, because they obviously knew where we were. In this moment, you mind starts going all sorts of places.)

Hanging out in the ER... waiting on 5/17/14 

Thankfully, they were in more communication about everything than we were aware of. We were first told that they were going in around 11 or 11:30 AM to get the lungs out of the donor’s body. That would mean that they would determine which recipient would get the lungs. The plans changed, and around that time, they moved us to a room on the 8th floor of the hospital. 

At that point, we waited some more, without any news about what happened to the 11 AM plan. We were only in contact with the nurses and aides in the ER and on the 8th floor at that point; no doctors, nurses, or social workers involved with transplant had seen us yet. 

Since we were the back-up, we had made contact with our families. However, we asked them to wait on coming until we knew more. His mom would be flying from Philly, and his brother was going to drive over from Ohio. Abby’s family knew early in the morning, as well. We consciously made the decision to wait to announce anything to anyone else or through the Lungs4Jens social media until we had more information. We were very aware that we could get sent home, and we were not sure we wanted to get everyone’s hopes up and then have to share disappointment right away. 

Jens signing consent for the transplant surgery 

Around 2:30 PM, one of the transplant surgeon fellows, Dr. Luigi (that’s really his first name), came into the room to speak with us. He had consent forms for Jens to sign, and informed us that they would be going in for the lungs soon (possibly around 4:30 PM), and that Jens would go back for surgery around 6:00 PM. We asked him about the back-up scenario. He explained that Jens really wasn’t the back up. They had a situation where they had two donors. One person would be receiving the heart and lungs from one of the donors. The other donor would be giving the heart to someone, and Jens would be getting the lungs. He was never the back up, rather, they were just doing further testing to determine which organs would go to each of the recipients. 

At that point, when Dr. Luigi left the room, it hit us hard. We had stayed fairly distracted to that point, watching our favorite TV shows On Demand on the iPad, playing games on the iPad, and watching TV. However, now we had some concrete, scary news to share. Jens called his brother, who was going to leave his home within the following hour. We knew he probably would not make it to Pittsburgh before Jens went back. Overhearing this very emotional conversation brought tears to my eyes. Jens called his mom, and she was going to arrive around 11 PM that evening, while Jens was in surgery. 

(fb screenshot)

Word spread quickly... 

We announced the news on Facebook, and the word spread quickly. (Looking back, this was an excellent, stress-free way to share our news without everyone contacting me directly to tell the story hundreds of times.) We had an outpouring of support from the comments, likes, shares, texts, and calls. We read through most of them, but we decided that Abby would respond to them once Jens went back to surgery. We wanted to spend the time together. 

Around 5:30 PM, Jens was taken to a pre-op area. At this point, he was in a hospital gown and looked “ready” for surgery. We waited in this area for about an hour. They offered Jens a TV to help pass the time, and of course, he wanted to watch baseball. He did a breathing treatment. We wrongfully assumed this would be his last ever breathing treatment, as we thought he would not have to continue these after the transplant. We were wrong on that, but at the time, it was a hopeful, positive thought- one that helped us to realize that we were making a change for the better. 

Jens went back into surgery/pre-op around 6:30 PM. Jens wrote this to you before he went back: 

Thank you to all of my supporters and for everyone that has been keeping up with my journey. Thank you for calling/texting/reaching out/praying. I can't tell you how much it helps to know that people are behind me. I'll be heading into surgery soon and I'm so thankful to have an incredible woman in Abby next to me. See all you crazy kids on the other side!

Doing our special handshake before he went back to the OR 

Next in the series: The Surgery and The Waiting Room