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/

Before and After, Part 3

(Originally published on 9/18/14 on cotaforjensh.com)

Today marks Jens’s 4 month mark with new lungs! We are happy to report that we walked 4 miles! The neuropathy he’s still experiencing left his feet feeling pretty sore for the last part, but he did it!

As promised, in this edition of “Before & After,” we’ll share some of the changes to a few of his organs.

Skin- Due to some of the drugs he takes, as well as some other risk factors, Jens is at an extremely high risk for developing skin cancer. He has to be very careful with sun exposure. His new favorite wardrobe pieces are some SPF shirts he’s received as gifts from friends and family. We hope they work, as they look really nice!

Since the transplant, we’ve noticed a change in Jens’s skin. His skin is a little softer, and we can tell that it’s a little thinner. There are times when I notice what looks like sweat beads on his face, but there’s not anything to wipe off. This “thin skin” is also a lot more sensitive when it comes to bruises and cuts. For example, it’s a lot easier for him to cut himself shaving. He also nicked his leg a few weeks ago, and due to this thin skin and the immunosuppressants, it has taken much longer for this small cut to heal.

Jens took off his gloves after pulmonary rehab. You can see a BIG difference in his hands! His left hand was super sweaty and wrinkly, while his right hand was just a little sweaty from being in the glove. 

Stomach- Jens had been on steroids to fight infections before, but he only took them for shorter bursts of time. Since the transplant, he is on a lower, but steady dose of Prednisone. A side effect of this medicine is that Jens has a large appetite. While in the hospital, he had digestive issues, so we never really witnessed this until a few weeks after we got home. He is known as “hungry, hungry Jens” most of the time! He could probably be a serious competitor in a food eating contest these days- no joke! 

"Hungry, Hungry Jens" is never full! 

Unlimited chips and salsa... a Prednisone patient's best friend! :) 

Pancreas- The transplant helped with many of the respitory effects of Cystic Fibrosis. However, Jens still has many of the same digestive issues he had before the surgery. Before eating, he must still take enzymes to help his body digest his food. His body does not produce the enzymes naturally, so he has to supplement any snack or meal with 6-7 of the enzymes (Creon). 

Endocrine- Prednisone can also affect Jens’s blood sugar levels, He’s had to monitor these since the transplant. We found out today that he needs to continue doing this at various meals, and he will probably need to see an endocrinologist to make sure that his levels are where they are supposed to be. Some CF patients have CFRD (CF-related diabetes). Jens has never had this, and hopefully the medicines do not cause additional problems down the road. Right now, we’re not sure of the long-term effects of this. 

Heart- Prior to transplant, Jens’s resting heart rate hovered in the 110s. This is higher than your average person’s resting HR. While exercising, this number could soar into the 130s-140s. Post-transplant, Jens’s heart rate is usually 90-100; while exercising, it typically goes 120-130. 

Kidney- Due to some of the medications he is on after transplant, his creatinine levels are closely monitored. Some transplant patients experience issues with this, and some must undergo dialysis. The harsh medications used to combat rejection can cause chronic kidney problems over time. Thankfully, we have not experienced anything like this yet. 

Liver- One of the questions we are most often asked nowadays by friends is if Jens can have a beer with them. Many of you know that Jens has not had any alcohol for about 6 years, as alcohol could seriously interfere with more and more of the medications he had to take. Right now, some of the medications Jens is on prevent him from having any alcohol. In the long run, we’ve heard that it would be okay to have a beer a day. However, they severely warn about “saving” drinks to use on one day; all of that alcohol at once plus all of the medications he is on for life could cause very serious problems in his liver and other organs. Root beer it is! 

Lungs- As most of you know, Jens had difficulty breathing prior to transplant. He wore oxygen every night while sleeping, during exercise/activity, and as needed throughout the day at rest. The Pulmonary Function Test (PFT) measured his lung function at 16-20% prior to surgery. He also did over 4 hours of inhaled medicines and other breathing treatments every day. Missing a treatment was not an option. 

No more vest! Jens singing/vibrating through a treatment on his birthday last year. 

While recovering in the hospital, he was weaned off of the oxygen within a few weeks, and we were able to return his oxygen tanks and equipment once we got home. He still does breathing treatments to continue to help clear the airways and prevent infections. He no longer does time on The Vest. He is currently doing albuterol and hypertonic saline inhaled twice a day. If he were to miss a treatment now, it’s not as concerning, since it’s more preventative versus necessary. His pulmonologist takes a proactive approach during the first year, especially, and he will add inhaled antibiotics every other month to the breathing routine. It is sometimes tough for him to keep doing these, but we try to stay positive about it, knowing that if we are diligent this first year, he may not have to do them longer. (I say “we” because these treatments can sometimes take up our time spent together or doing more fun things.) 

His first PFT from the week after he was released from the hospital measured 75%. Two weeks later 77%. Today, we are THRILLED to share that his PFT measured 93 percent! (80% is considered normal.) We knew it was on the rise, and at his last test five weeks ago, he was already at 79%. In typical Jens fashion, he wanted to wait to share this amazing news until he was “officially” normal. 

His latest PFT results are proudly hanging on our fridge! 

4 months ago, I witnessed him push through the difficulty of breathing on his own to be able to get the ventilator removed. He worked so hard and persevered through so much. 4 months later, I’ve watched him continue to persevere through new routines, odd side effects, and more. He diligently goes to pulmonary rehab twice a week, every week and is always pushing to do more! As he said after hearing these results, “All of this hard work is paying off… Next step: 100!”

Before and After, Part 2

(Originally published on 8/31/14 on cotaforjensh.com)

We talked about his head last time, so it’s only fitting that this post features his shoulders, knees, and toes. :)

Arms- During his 10 hour surgery, his arm were propped over his head. Try holding your arms above your head for 10 minutes, let alone 10 hours! It was very tough for him to lift his arms while he was in the hospital. Even 3 months later, he still has a limited range of motion in his shoulders and upper arms. His armpits are sore, which is a combination of the arm positioning as well as the incision in that area. 

Post-surgery, patients are not allowed to lift, push, or pull over 10 pounds for at least 3 months. However, since Jens has continued to experience pain and discomfort in his sternum, the transplant surgeon has extended this limitation until we see more progress in the sternum “healing.” In pulmonary rehab, Jens lifts 3 pounds weights to do bicep curls, tricep pulls, and shoulder shrugs. He is able to do some other “arm-r-cise” motions without weight, but these exercises are still very tough. 

He can't shoot just yet... 

Hands- He is currently dealing with some side effects of what we believe is neuropathy. His left hand becomes very cold at times, and can also be clammy. He experiences tingling in his fingers on his right hand. It is very evident when you hold both of his hands simultaneously that something is “off.” He is on some medications for these symptoms, and it is undetermined at this point if this is permanent or if it will get better in time. 

A couple of weeks ago, we noticed some ridges in the middle of his fingernails. We asked the doctor about this, and it turns out that his nails are growing back stronger than before. This is due to more oxygen reaching his extremities. I wish we had a “before” picture of his fingernails, which were fairly blue and thin. Many CF patients fingers are “clubbed,” and Jens had some of this occurring before. However, the transplant has caused oxygen in his body to reach his extremities more efficiently. 

New fingernail growing

Immediately after transplant, he began taking anti-rejection medicines. One of the side effects of this drug is tremors. He had trouble holding eating utensils, typing on his cell phone, and writing while in the hospital. He still experiences the tremors from time to time. 

The best thing we can do for his hands is to keep them as germ free as possible! This was important pre-transplant, but it is vital post-transplant. Jens’s immune system is suppressed, so getting a cold could be life-threatening. Hand washing is in full effect around our home, as well as for the people that are around us. Jens wears medical gloves at pulmonary rehab, and when we visit museums, he avoids touching anything. Germ killing is a huge priority in our life right now, so don’t be surprised if you come to visit and we’re a little obsessed about it; we have to be! 

Legs- While he was in the hospital, his leg muscles atrophied some. Jens is not shy about telling others that one of his favorite features is his “killer calf muscles.” We saw these take a hit after surgery, but he has worked hard in pulmonary rehab to get them back in business. He has been able to walk longer distances thanks to the new lungs, so he has worked hard to continue to build up the strength and endurance in his leg muscles. In pulmonary rehab, he works out on a Nu-Step machine, walks on the treadmill, and does other leg exercises. He’s building up to be able to ride a bike. 

Feet- His feet have also experienced similar symptoms of the neuropathy as his hands. The tingling and burning sensations can cause him discomfort as he walks, so there are times when he doesn’t feel like walking as much because of that. 

In our next edition of “Before & After,” we’ll share about how the transplant has affected some of his organs, especially his lungs!

Before and After, Part 1

(Originally published on 8/18/14 on cotajensh.com)

Today marks 3 months after the transplant. We were talking this weekend about how things are different today than they were before the transplant, and even different from various points in the recovery process. There is still so much that is changing on Jens’s body, and there have been things happen that we didn’t expect. Here’s a little taste of what’s changed and what’s stayed the same, starting at the top…

Hair- Jens needed a haircut badly when he got the call. In fact, we had planned to go on that Saturday! His hair was out of control in the hospital, but we took care of that the week he was home. It’s about time for another cut already. We haven’t seen much change in the texture or style of his hair. 

Eyes- Jens experienced hallucinations in the hospital shortly after the surgery, as he began the immunosuppressant meds. He saw YouTube videos streaming up the cabinets in his hospital room and even 2nd grade writing on the walls. This irritated him for a while because he couldn’t shut his eyes to stop the visions. The hallucinations have subsided, but he still has extremely vivid dreams every so often. He had more of these when he first started the immunosuppressants. The dreams are extremely realistic, and when they wake him up, he feels like he’s been right in the middle of them. The meds have caused minimal side effects to his vision/clarity during his waking hours; at this point, he could handle “operating heavy machinery” and driving. 

Ears- His hearing has not been affected by the meds, so there has been no change there. 

Nose- Prior to the transplant, Jens had chronic sinus issues in addition to CF. If he walked down the stairs, his nose would start running. The “drip” combined with a cough while performing movements made walking, grocery shopping, and exercising a more tedious and messy affair. Jens previously used an entire box of tissues every couple of weeks. His nose did not exhibit much, if any, drainage for the first few months after transplant, but we have noticed a little more production the past week or so. 

Mouth- You may remember reading about a metallic taste Jens experienced when he began eating again after transplant. After a few weeks, this went away. Jens says there are still things that don’t taste “normal,” but the metallic taste isn’t the cause. (We think his tastes may return, but some things just might taste different now.) 

Jens struggled taking his pills in the hospital. We discovered the trick of taking them with applesauce to help get them down. This was mainly caused from the tubes that were in his throat and esophagus. Before surgery, he could take his coated enzyme capsules by just using his saliva. He needed applesauce for those “ formerly easy” ones in the hospital, graduated to taking them with water around the time he came home, and now can take them occasionally without water. 

Prior to the transplant, Jens produced a lot of sputum (mucus) and had a fairly regular cough. Many of you know he used empty water bottles to contain the sputum, and he would fill 1-2 each day. The “filled” bottles were heavy, as the spit contained a lot of thick mucus that came from his lungs. Nowadays, he has minimal spit, with most of it being clear and maybe a few coughs of sputum (mucus). If I had to quantify it, he probably produces about 3 ounces a day. 

If you’ve talked to Jens on the phone in the past 3 months, you may have noticed that his voice is a lot stronger than it was. This is something I’m not sure I recognized at first, until someone pointed it out. He coughs a lot less as he talks (which is nice for his phone partners, as his coughs were strong and LOUD in the phone). His cough has been a lot weaker, due to the discomfort in his chest and the muscles needed to help cough. Also, because he is not coughing as much each day, his abdominal muscles have weakened. Bye-bye 6-pack abs! (He will have to do sit-ups like the rest of us, once he is able to.) 

That’s it for Part 1. Stay tuned to hear more about how his double lung transplant affects the rest of Jens’s body.

Wait- he has WIRES in his chest?!

(Originally published on 8/8/14 on cotaforjensh.com)

We have some great news to report from Pittsburgh... Jens's bronchoscopy (last Friday) showed no rejection! Now, it is still a possibility that his body could still reject the organs. You may remember that he had mild rejection last month, which was treated with a high dose of steroids. It was good to see that the treatment worked, but we know that he may need more treatments in the future if rejection occurs. We are still waiting on all of the cultures to come back to see if there are any infections (bacteria, fungi, etc.). If these come back negative, the doctors may take a few months "off" of bronchs/biopsies (unless Jens shows signs of rejection sooner).

With this news, they have said that he can go to a baseball game. Although, Jens is currently hoping that the hometown Pirates hit a slump, so his beloved Reds can gain some ground in the standings...

Jens is still struggling with chest pain. We learned last week that he has some wires holding his sternum together. They never told us this at the transplant classes or at any point before last week, so we were surprised that some pokey wires could be causing some irritation. We met with the cardiothoracic surgeon today, and he shared with us that after Jens's transplant, he has since changed how he positions the wires in people with thin sternums (like Jens had). While it was neat to hear that Jens's case may be helping others, he was kind of bummed that he has the "old" way of wiring, which may be causing this pain. We're told (once again) that the pain should subside with time and that he "looks great."

Jens eating a favorite "snack"

Another reason that they've given us as to why he is still experiencing pain is that there is not a lot of "cushion" on him in that area of his chest. Since getting home from the hospital, we have really tried to help Jens get some good weight on him. He's probably gained 5 or so pounds since then, so he is not back up to his pre-transplant weight yet. The past few weeks, he has had a REALLY great appetite, and we're fitting in 4-5 meals per day. Hopefully, all the eating (and work in pulmonary rehab) will pay off and he will gain good weight and muscle.

Stretching at pulmonary rehab 

Thanks for continuing to follow along! If there's anything you're curious about, shoot us an email/text/call and maybe we'll blog about it. For now, we're going on a walk to enjoy the cooler night temps here in Pittsburgh!

Since We've Been Home...

(Originally published on 7/5/14 on cotaforjensh.com)

It’s been almost 3 weeks since Jens was discharged from the hospital. Since coming home, the “caregiver” role has taken a little more time than I imagined. People told us that the hospital part was just the beginning of the marathon- that we (especially I) needed to pace ourselves. This has been true. With Jens being home, it has been a lot easier to prepare food, clean, do laundry, and even take a mid-day nap! We live 4 miles from the hospital, but near the end of his stay there, I would go and stay for the entire day (instead of going back and forth). I am grateful for feeling like I have “more” time to get things done, as well as being in the relaxed environment of our home.

All in a day's work for Jens. 

The biggest difference in our “time” has been learning the medicine schedules. Jens takes around 30 pills a day (plus 21-28 enzymes with food), does 2-3 breathing treatments a day, and has IV meds 3 times a day. (As time goes on and cultures/tests come back showing negative signs of infection and rejection, some of these meds and treatments will cease.) Some of his meds must be taken with food, some without food, some within so many hours of something else, etc. As the beginning, we had to adjust the med schedule to get certain pills at the same time, as well as to fit in his treatments, IV, meals, exercise, and sleep. The first few days we were home, Jens took pills/IV/inhaled meds at 7AM, 8AM, 9AM, 9:30AM, 10AM, 10:30AM, 12PM, 3PM, 3:30PM, 5:30PM, 6PM, 8PM, 9PM, 10PM, and 11PM. As you can imagine, the phone alarm reminders were going off constantly! Thankfully, we’ve figured out the schedule so we have it a little better- only taking them at 7AM, 9AM, 3PM, 9PM, and 11PM, plus some at whatever time he eats meals. In addition, we have to track stats like his weight, temperature, blood sugar levels, and such, so an Excel spreadsheet has also become our best friend. We’ve been using some medicine alert apps to help keep track of med times as well, but at this point we’ve gotten into a fairly steady routine. 

(excel sheet screenshot)

Did you think I was going to organize this any other way?! 

Needless to say, we’ve been a little busy the past few weeks, so we apologize for not updating more! 

Jens’s biggest complaint has been tightness around the incision site. The doctors have examined a few chest x-rays, so the pain could be related to the fact that Jens is skinny and there’s not much “padding” to help with the pain of healing and/or that he may be too active. They don’t normally have patients run up the steps when they get home! Being at home has caused Jens to use muscles and movements he didn’t have to employ while at UPMC. Getting up from a normal bed is still tough and painful, but they just keep telling us that it will get better with time. Jens has a goal to walk at least a mile each day, and his longest continuous walk to date was 2.5 miles! (This is without oxygen and within our neighborhood, which has some sloping hills.) 

We witnessed this gorgeous sunset in our neighborhood on our evening walk! Jens is feeling GREAT after 2 miles, while sporting his new SPF shirt (thanks Ty) and his new HAIRCUT! 

Last Friday, Jens had his bronchoscopy and biopsy, which he will have every few months for the first year and intermittently in subsequent years. They take cultures from tissues and fluids and let them “grow.” We got a call on Thursday that Jens has A-2 rejection. This is a mild form of rejection and something they commonly see. It is treated with a high dose of steroids, given at the outpatient clinic at the hospital over 3 sessions. This treatment began at 7 AM yesterday, and the last dose will be tomorrow morning. We’re not sure if this is related, but he’s had the hiccups multiple times today, which are pretty uncomfortable considering his lingering tightness in his chest area. We hope the boost of steroids will help the rejection, and we hope that the cultures from the bronch/biopsy continue to come back negative (we will know in a few weeks the status of all of them). 

Thanks for your continued support, prayers, and encouragement! 

Abby & Jens

Victory Lap

(Originally published on 6/20/14 on cotaforjensh.com)

For those of you who have followed our story, you’ve heard about our friend Emily Huff. (If you’re new, go back and read a few of the blog posts about her.) Tomorrow, she will run a “victory lap” in the form of a marathon in Seattle. She included a log of her training miles in our daily email yesterday. To date, she has run 580.52 miles in her “Run4Jens” quest. Ironically, that is the distance from our place in Nashville to our apartment in Pittsburgh- plus a round trip visit to UPMC.

During those miles, Emily has been so gracious to intentionally, selflessly, and faithfully pray for us along this transplant journey. There have been so many times where her email has been spot on with what we were going through- even though Emily and I rarely had the chance to chat these past few months. Emily prayerfully listened and tried to be present in whatever we were going through. Training for this marathon has come with a more aches and pains than in any of her previous trainings. Emily used these tangible, physical reminders to enter into our pain; each little hurt served as a symbol of the things Jens was physically going through, as well as our mental, emotional, and spiritual pains.

Now it is time for the “victory lap.” Once again, we marvel at God’s perfect timing. As she and I talked the other day, I wondered how differently this run would feel if we were still waiting for “the call.” This is the end of her training. This is the race. What if we were still waiting? Would we have felt more alone and more desperate for new lungs? Thankfully, those questions are irrelevant. This weekend’s race is perfectly aligned with Jens’s discharge from the hospital. While Emily’s training is over, Jens’s training is just beginning. We have so much hope going into this season. Through her training, her prayers, her encouragement, her friendship, we are strengthened for the road ahead.

Emily is always so good about symbolism, and as I was going through the things we brought home from the hospital, I came upon the yellow stethoscopes from Jens’s hospital room. Because he is on “contact precautions” while in the hospital, there is a stethoscope in the room so that it is only used with Jens. “A stethoscope is used to listen to the internal sounds of the body. It is often used to listen to lung and heart sounds.” There cannot be a better symbol of Emily’s journey. As a gift, one is in route to Seattle to hang as a medal of honor for her commitment to us during this season.

Emily has tied us in her shoelaces every morning. She sent us these fun “Shwings” to tie in our laces on race day. We hope that you will join us in tying her up in our shoelaces and cheering for Emily as she runs this race with such gratitude and joy. Thank you, Emily. TWO ARE BETTER THAN ONE!

PS- In case you’re only following the blog, you’ve missed some incredible news. Be sure to check out the Facebook page: www.facebook.com/lungs4jens

Two are Better Than One

(Originally published on 5/25/14 on cotaforjensh.com)

I'm on a break from being in room D944 this afternoon. I was thinking back to one of my favorite emails from Emily Huff. If you've been following along, you know how she is training for a marathon and running in honor of Jens (Read more here and here). One of my favorites was called “Two Are Better Than One.” In this writing, she talks about her friend and occasional running buddy, Elizabeth. Emily writes of her friend helping her finish the Portland marathon last year and the ways her friend always makes her a better and faster runner. This verse came to mind: “Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. But someone who falls alone is in real trouble.” (Ecclesiastes 4:9-10, NLT)

Emily wrote:
As I ran, I thought about how this rings true for you that TWO ARE BETTER THAN ONE. It is so much better to go through something scary and risky when you have a hand to hold. It is so much better to run the race when you have someone who can run alongside you to encourage you and pace you and give you reason to carry on. It is so much better to have someone to cry with, to laugh with, to share the mystery of life with…

You both have each other in this. And that is so very very good. TWO ARE BETTER THAN ONE. I am giving thanks that God gave you to one another and that you all will be there for each other with the marathon ahead that sometimes may feel too long.

As I think back to the last few months and the last week, I've thought about how important this has been.

Two are better than one while sitting in hospital all day, waiting to hear if you're getting a lung transplant that day.

Two are better than one when you have to meet with the surgeons after the surgery.

Two are better than one to get through the 20 minutes of breathing on your own before they'll take the breathing tubes out of your mouth.

Two are better than one to see smiles and hear such grateful words after you've had a transplant.

Two are better than one when you have to move from the bed to the chair (and vice versa). 

Two are better than one when you get to celebrate moving from the ICU to the step down unit.

Two are better than one while walking down the hall with chest tube drainage things, IV poles, and oxygen tanks.

Two are better than one to learn all of the pills you have to take after transplant.

Two are better than one when the hospital food isn't that appetizing, and you need a runner to go get something more palatable.

Two are better than one to watch your favorite TV show with you in the hospital.

Two are better than one to FaceTime with when you feel cooped up in your room.

Two are better than one to cheer you on when your cough is weak, your chest hurts, and to reach your incentive spirometer goals.

Two are better than one when you see a smile every time you reenter the hospital room and remember what this is all for.

Two are better than one to help you raise money months in advance of the transplant, so that when it happens, you don't have to worry about a thing.

Two are better than one to take care of your students to make sure they have an awesome end to their 2nd grade year.

Two are better than one to help you move, pack, load, unload, and find your way as you leave a town you love.

Two are better than one to pass the time waiting by exploring and discovering new things together in a city where you don't know anyone.

Two are better than one to pray for you, encourage you, support you, and cheer you on via emails, texts, calls, comments, care packages, cards, and more during the toughest battle. 

Thank you for being part of our "two." We are so honored that you have come alongside of us during this journey.

(I'm having trouble including pictures on this post, so make sure you see them at www.facebook.com/lungs4jens.)

LUNGS 4 Jens!

(Originally published on 5/19/14 on cotaforjensh.com)

As you probably know by now, Jens got new lungs this past weekend! I have my iPad with me at the hospital, but it is difficult to update the blog from there. The most up-to-date news, info, and pictures will be on the Lungs 4 Jens Facebook page. (The 140-character version is also on Twitter.) If you have a FB account, you can "like" Lungs 4 Jens." If you do not, just click on this link to see it as you would any other webpage.

I will detail the events of the past few days at some point, but I just wanted to give an update for today:

Jens was not able to sleep well last night, due to the amount of activity and "tending" to him in the CTICU (Cardiothoracic Intensive Care Unit). Despite his extreme fatigue, he has continued to be polite to the medical staff and to me. Every time I come in the room, he says something like, "It's so good to see you, Abby." He is also very appreciative of the care he's getting from the official medical staff and the "family doctor," his Björn. (Björn is not Jens's doctor, but he does a fantastic job of asking good questions, giving great advice on how to talk with the medical staff, and being an all-around encourager to his brother.)

Early this morning, the surgical team decided it would be okay to take 2 of the 5 chest tubes out, since they saw steady progress in the 24 hours since the surgery ended. In addition today, Jens also got the central line in his neck removed, his catheter taken out, his port accessed, and moved to the "step down unit"- also known as 9-D around UPMC!

He had some swelling today before he left the CTICU, which is a result of some air in his body. This can happen with the removal of the chest tubes, so it will probably delay the removal of the other 3. Jens was very worried when I noticed that the right side of his face had become swollen. This was the first set back, so he had gotten used to the "smooth sailing" he's had thus far. The doctors in the ICU were responsive immediately, and said that swelling like this can occur. The swelling should decrease with time.

His feeding tube is in the process of coming out as I type. (I'm at home taking a break.) He has been looking forward to this since yesterday when they removed the breathing tube, as he has not been able to have any liquids. His mouth is extremely dry, and this and the tiredness are his biggest complaints at the moment.

Everyone is very pleased with his progress so far, as is Jens. Today I've heard less of "What should I be doing?" as any time he is not being attended to by medical staff, his eyes have almost instantly shut. Dr. Pilewski made a good point that being on the floor will help, as it is calmer, and he has a window, which will help his body adjust with day and night. He is still showing determination by doing his treatments, taking deep breaths, and being compliant to everything asked of him.

Jens practicing deep breaths on the "incentive spirometer" earlier in the CTICU today (The "goal" has already been raised again to 1250!) 

Next steps include getting him up and walking more and more (although this will be limited as long as he has the chest tubes in, as he has "baggage" with those), continuing to wean him off of the oxygen (he's been on 1-2 liters), and continuing to expand the lungs through the use of the incentive spirometer. Jens has not taken a FULL breath yet, as he has to continue to condition his new lungs to do this. Jens is literally learning to breathe again. He is very motivated by this little machine, as it gives him good feedback as he goes for another important goal. 

I am doing very well. Thinking back, I haven't really been worried. I found a lot of peace in reading and rereading Romans 8 the past few days. As far as energy, yesterday, I ran (with a few hours sleep while he was in surgery) on the excitement and adrenaline of his great progress. Today he is sleepy, so we are trying to be quiet instead of interacting with him. Naturally, we become more sleepy sitting. I often find myself when I go out for lunch or come home for the night having things I want to turn and say to Jens or text to him. It's just different when your best buddy is not around. He was so sweet to me before the surgery, as he left me a little note to help get me through. 

Yesterday, he would not let anyone else in the CTICU room until I got there once he was awake because he wanted to see me first. He is so polite and appreciative, and he says such nice things. I think it's his way of showing how grateful he is for his new lungs and his new freedom to breathe! 

Thank you so much for all of the prayers, texts, calls, messages, and "likes" on Facebook. I have read many of them to Jens (whether he was fully awake or not...), but it will be fun to go back through all of this with him on the other side of recovery. At no point in this have we felt alone, and it makes us very happy to have so many on our side to share this wonderful joy. 

My last quick thought is from Emily Huff (running the marathon for Jens). She subscribes to daily emails that quote Henri Nouwen. This is the email she received yesterday: 

The Breath of God Within Us 
When we speak about the Holy Spirit, we speak about the breath of God, breathing in us. The Greek word for "spirit" is pneuma, which means "breath." We are seldom aware of our breathing. It is so essential for life that we only think about it when something is wrong with it. 

The Spirit of God is like our breath. God's spirit is more intimate to us than we are to ourselves. We might not often be aware of it, but without it we cannot live a "spiritual life." It is the Holy Spirit of God who prays in us, who offers us the gifts of love, forgiveness, kindness, goodness, gentleness, peace, and joy. It is the Holy Spirit who offers us the life that death cannot destroy. Let us always pray: "Come, Holy Spirit, come." -Henri Nouwen

Straws 4 Jens

(Originally published on 5/1/14 on cotaforjensh.com)

May is Cystic Fibrosis Awareness month. Many local Cystic Fibrosis Foundation chapters hold "Great Strides" walks and events this month to raise awareness and funds to help find a cure for CF. In honor of this, I thought I'd take a cue from one of our biggest fans, Emily Huff, who is training for a marathon in honor of Jens. On one of her runs, Emily ran part of the way while breathing through a straw to simulate how it feels for Jens to breathe.

I got a straw and headed out in our new neighborhood. At first, it was a little uncomfortable to hold the straw in my mouth. As I continued to walk, I found that I had no choice but to focus on my breathing. The straw was causing me to take shallower breaths as I went, so I had to come up with some sort of rhythm on my own.

The Monongahela River in our "backyard."

I probably walked a half mile in total. The most annoying part was all of my spit coming out of the straw. However, if you've been around Jens, you know that he too has a lot of sputum (spit/mucus) that he has to get out of his lungs at rest and especially with activity. 

The hardest part was the finale, climbing the 19 steps to the apartment. I walked up them close to my normal pace, but I found I was VERY light-headed and felt flushed when I got to the top. I came inside, breathing very heavily, and used Jens's pulse-oximeter to measure my oxygen saturation. Jens does this frequently, and when he gets below 90, he knows he must go on some oxygen to get his levels back above 93. 

You can see in the picture that my o2 saturation was 82. It took me a few minutes to recover to get it back into my normal high-90s. However, in those few minutes, my whole body was affected by the lack of oxygen I had. I felt lightheaded, my heart was beating faster, I was tired. 

These are all things Jens experiences on a daily basis doing everyday things like fixing a bowl of cereal, getting dressed, and definitely walking up the stairs to the apartment. 

In honor of CF Awareness and Jens, consider taking a walk or doing part of your exercise/work-out with a straw in your mouth. Don't be bashful! Rather, if someone asks, share Jens's story and help raise awareness. If you're brave enough, send us your picture & your story to put on the Facebook page. 

Together, we can stand with the Cystic Fibrosis Foundation and researchers are working hard to help CF stand for "Cure Found."

http://www.cff.org/aboutCFFoundation/NewsEvents/5-1-CF-Awareness-Month.cfm

Breathing through a Straw (Run 4 Jens, Part 2)

(Originally published on 4/26/14 on cotaforjensh.com)

In honor of the Nashville Marathon this morning, I thought it would be fitting to share the story of our sweet friend, Emily Huff, who is training for a marathon. As she trains, she is praying intentionally for us on our journey. (See the last blog post for more about Emily.) 

She did this simulation at the beginning of April. Things were hectic for us in Nashville, as we packed daily and I prepared to end my teaching year early. Jens had just gotten out of the hospital from the reaction he had to the Reclast injection. In our minds, the moving date was drawing near, as we prepared to leave a city we called home for 10 years. We were exhausted. We were stressed. We were emotional. We were breathing through straws.

Here’s more from Emily’s run: 

I was at a lacrosse game for Taylor a couple of weeks ago talking to the dad of one of Taylor’s teammates. He happens to be a pulmonary doctor so I asked him if he could help me understand what it is like for someone to have CF. He told me that it is like breathing through a straw. 

I’ve heard this before but this time it stuck in my head, and I could not stop thinking about it. When I went on a few training runs last week, I imagined what it would be like to breathe through a straw and then decided that I would give it a shot this week on one of my shorter runs. 

So, I headed out the door with a straw in hand when I took the kids to school this morning and parked my car near some trails by UW (University of Washington) campus. I figured that I would not run into that many people who would question my sanity for running with a straw sticking out of my mouth. 

I started with the idea that I would run 4 miles breathing in and out through the straw, but as I ran the first 5 minutes this way, I realized that this was not going to be a good idea. I did not want to black out from a lack of oxygen during this simulation so I compromised and set some goals. I started with ten breaths and then went to eleven, then to twelve, and so on until I got to twenty breaths in and out through the straw. I tried not to breathe through my nose during this time (which was funny because I have a bit of a stuffy nose from spring allergies) so it sounded like I was snoring sometimes while I was trying to breathe through the straw. 

It was hard to find a breathing rhythm as it took some concentration to exhale and inhale without doing it too fast while trying to reach the goal of the number of breaths that I was trying to reach during each interval. After each of these intervals, I would take a DEEP breath and fill my lungs with air. It has never felt so good. I’ve done simulations before like this- being blindfolded for a period of time to imagine what it would be like to be blind, trying to use sign language to imagine being deaf, using a wheelchair for part of a day to put myself in someone’s place who is confined to a chair and to understand accessibility concerns and issues, etc. Today, my run brought CF closer to home and made me realize how much I take for granted when I take each breath during a day without a second thought.  

Jens, being that you are my only friend whom I know who has CF, this is all new to me to really try to understand what it is like. As I mentioned, I’ve heard this analogy before about CF being like breathing through a straw. While I have tried to imagine what it is like to be breathing at 16% lung capacity, I had never actually felt what it was like to run with such a limited amount of breathing until today. 

Jens, I marvel at the way you take this in stride. And, Abby- while you yourself do not have CF, it seems that there is so much on your plate right now that it must feel like you too are breathing through a straw too. You both are trying to get enough air to breathe, to tackle another day, to put one foot in front of the other. 

It made me pray hard for you, Jens, for your new lungs. I want so badly for you to be able to breathe effortlessly—without breathing treatments and without being hooked up to oxygen. I so want you to be able to fill your lungs with air, to take a deep breath with ease, and to live your life. And with God’s help, I know that’s possible. 

I know in my heart of hearts that with God, nothing is impossible. Some people may say to me. “You don’t know the meaning of the word “can’t”, do you?” 

Maybe I don’t. 

And you don’t. 

And God doesn’t either.