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

A Day in the Life: Bronchoscopy/Biopsy Day

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

Last Friday, Jens went to UPMC for his 5th bronchoscopy since being transplanted in May. The bronchoscopy and biopsy are procedures used to determine if there is any rejection or infection in his new lungs. Here's a run-down of what our bronch. week looks like for the "extra" bronch. stuff. 

Monday (or any day before Friday) 
8:30 AM Bloodwork, including the normal bloodwork levels, Tacrolimus/Prograf (anti-rejection med) level, IGG, INR 
- Bloodwork has to be taken before 9 AM, which is what they call a "trough level." This is taken at this time because this would be the lowest amount (or trough) of Tacrolimus in his system. His doses are adjusted according to this level, if needed. 

Thursday 
1:30 PM Chest x-ray 
(1:45-3:15 PM Pulmonary Rehab.- Jens does this every Tu/Th, so they graciously scheduled his bronch. appointments around this. This can be VERY unusual, as we often end up going to the hospital at different times for the bronch. stuff than the regular stuff.) 
3:15 PM Pulmonary Function Test (PFT)- to determine lung function level 
3:30 PM* Appointment with Dr. Pilewski (CF transplant pulmonologist) to check-in, go over meds, talk about the treatment plan, discuss any medical issues, stop any antibiotics prior to the bronch., and give information about what meds might be started after the bronch. results are reported. 
(*This appointment was actually 3:45-5:30 PM after we talked with a transplant nurse, resident, and Dr. P.) 
12 AM Jens is NPO- no more food or drink until after the procedure 

Friday 
6:15 AM Leave to go to the hospital. (Jens was instructed to take his 1 Prograf pill with a sip of water at this time, since he usually takes it at 9 AM.) 
6:30 AM Arrive at hospital; sign-in and go to waiting room 
6:40 AM Jens signs initial paperwork/register 
6:45 AM Jens goes back with the nurse to get vital signs and place IV. He's supposed to change into a gown at this point, but he always refuses to put it on until the last minute. (It's always cold in there.) 
7:15 AM Abby gets to go back to the pre-op area 
7:30 AM Jens and Abby go over the med list with the nurse and report what meds he's on and when his last dose of each was. (Yes- this is the same list we went over the day before.) 
 8:30 AM The bronch is scheduled to begin at this time, but we're still waiting in the pre-op area 

This is a picture from the July or August bronch, but you can see why Jens isn't a fan of the hospital attire. 

 8:40 AM Jens makes a quick switch into his gown, and "transport" takes us back to the bronch. lab waiting room 
9:05-9:15 AM Anesthesiologist comes to review Jens's history with him 
9:30-9:35 AM The pulmonologist doing the bronch. comes to talk to Jens 
9:45-10:45 AM Jens is taken into the bronch. lab for the procedure. He is under general ansthesia for this procedure. 

(Abby goes to hang out outside or at a local restaurant during this time. The waiting room is always full and filled of interesting characters.) 

10:45-11:45 AM Jens is taken to the recovery room. He has to have a chest x-ray to make sure everything looks okay and to make sure that he doesn't have a pneumothorax (collapsed lung). He is monitored and his vitals are checked to ensure that he's doing okay and awake. Jens has had trouble in the past getting to leave this room, as he's at the mercy of whenever the transport people come. He is usually very anxious to leave and begging them to let him move to the next stage. 

12:15 PM This time, he was in recovery room an hour and half, waiting to get to leave that area. Jens is finally taken to the post-op area to get his IVs out, change back into his clothes, and finally drink some water! Abby is reunited with him at this point. He also gets to take his morning dose of pills from 9 AM. 

12:40 PM They (finally) bring the discharge papers for Jens to sign. Abby drives Jens home, as Jens is not allowed to drive for 24 hours. 

During the past two bronchs, Jens has had to get a boost of iron due to low iron levels. This is done in the post-op area after the recovery room. This is a very (unnecessarily) long process, which involves them confirming or getting the orders (that were probably put in the day before), getting the infusion from the pharmacy, and administering the needed fluids. This process can add well over an hour and lots of back and forth with medical staff. 

All of this totalled a 6 hour day. His previous ones were over 7 hours. The hardest part of the day for me (Abby) is to keep my mouth shut when I see the blaring inefficiencies and staffing mis-distribution at this location within the hospital. I have to remember, "No one is asking me [to solve the problems]."

Afterwards 
After the bronch, Jens is usually very tired. This is a combination of getting up early to go to the hospital, as well as the lingering effects of anesthesia. It usually takes him 3-4 days, at least to feel "normal" again. His throat is sore immediately after, and this doesn't help when he's very hungry. The night of and following day, he typically complains of neck pain, as well as continued sore throat. This time, he has what looks like a sore from where something was rubbing against his lip, or perhaps he bit his lip. He coughs up sputum dotted with blood for a few days after. He has to monitor for fevers, as well.

The bronch/biopsies begin coming back within 3 days, and it takes about a month to get all of the results back from the cultures. Some of the cultures have to be isolated to "grow" for weeks. After his first post-hospital bronch (in June), they called 6 days later to tell us he was showing rejection; treatment was started the next day. We had to wait 28 days on that bronch to then have an "all-clear" for all of the other things they are monitoring and "growing."

To learn more about the bronchcoscopy and rejection: http://lungtransplantfoundation.org/patient-resources/lung-transplant-rejection/