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.

Run 4 Jens

(Originally published on 4/24/14 on cotaforjensh.com)

It was a great afternoon for a day game at PNC Park. While the hometown Pirates didn't win, it was still a win in Jens's book for his favorite team, the Cincinnatti Reds. Note to self: Learn how to navigate the post-game traffic better!

Our dear friend, Emily Huff, is training for a marathon in June. She has chosen, once again, to train and run this race in honor of Jens. (She previously ran the Knoxville marathon in April of 2012 in honor of him AND with a time that qualified her to run in the Boston Marathon the following year!) She is an incredible person, and we are so honored by this intentional and loving gift. Emily sends an email every day with thoughts, prayers, and fun pictures from her run. With the busyness surrounding the move and wrapping things up in my classroom, I have not been able to be in touch with Emily as much during her training this time around. So, as she begins her training each day, she pauses to listen to be led on how to pray for us. It has amazed me the way that God is keeping us connected and that we have such a fierce prayer warrior on our side. 

Emily ran the 2012 Knoxville Marathon- in record time- for "Team Jens" while wearing a Vanderbilt Lego hair tie in her hair- all in honor of Jens.

We thought we would share some of our favorite emails from Emily with you all over the next few days. (If this moves you and helps you along your journey, let me know and I am happy to share more with you via email.) 

On Monday, the day that Jens was listed, Emily had not seen the blog posts (organ donation or being officially listed). Here’s part of what she wrote in her daily email to me: 

As I was running, it was on my heart to pray for the lung donor and for their family. Knowing that one person has to die and that life will be altered forever for those who love him in order for Jens to be able to have new lungs is a sobering reality. However, organ donation is such a beautiful way for life to carry on and for an incredible gift to be given. I read in one article that after death, one person can help as many as eight people by donating their organs. 

My route today took me over behind the University of WA campus in the same place where I ran while trying to breathe through a straw. That place will always remind me of you two, Abby & Jens, after that memorable simulation where I was gasping or breath after trying to run and breathe through a straw during my workout in an effort to understand your daily reality more fully. 

This afternoon, I caught up on email after vacation and saw your post about being officially listed on the transplant list now. No wonder God wanted me to be in prayer for the donor and his or her family. 

He's got you in His hands. Even if you don't know what grocery store to go to yet or what the fastest route is to the hospital, I am praying that you will have peace knowing that you both are in His hands. 

Stay tuned for more on Emily's run while breathing through a straw!

Officially Listed

(Originally posted on 4/21/14 on cotaforjensh.com)

Earlier today, Jens was officially listed as "active" on the list for a double lung transplant. We knew this was coming and this is the reason for our move to Pittsburgh, but everything was kind of a blur today.

Let me back up a few days to give you a recap...

Jens & Brett on the U-Haul. Our apartment is to the left of Jens's shoulder- 2nd floor, corner.

We left Nashville on Tuesday and drove to Columbus to stay with our friends Josh and Michelle for the night. On Wednesday, Abby & our friend, Brett, got up early to get to Pittsburgh to begin unloading the truck. Brett offered the gift of driving the U-Haul and helping us unload it. After signing the lease and getting the keys, it took about an hour to get the truck empty! We had wonderful help from Josh's cousin, Brendan, and Uncle Marty. The guys set up beds, assembled tables, and moved furniture! Abby emptied every box by the day's end (and took the next few days to organize everything). We treated ourselves to some delicious burgers and milkshakes at Burgatory that night for a great day's work!

sunrise from our patio/balcony on 4/19/14)

On Thursday evening, Jens started feeling some pain in his shoulder. At first, he thought he slept on it funny. However, the pain persisted. By Saturday evening, he was feeling more shortness of breath, and we decided it was best to check out UPMC's ER department to rule out a pneumothorax (collapsed lung). 

After some tests in the ER, it was determined that he has pneumonia in his right lung. Since he was already on IV meds, coupled with the fact that he is "new" to the pulmonary team in Pittsburgh, they decided to let him stay on his current routine and to check in on Monday (with the understanding, of course, that we would come back to the ER if anything worsened). 

Abby cooked an Easter brunch and spent some time outside on a beautiful Easter afternoon. We attended an evening church service, due to our late night in the ER, at the gorgeous St. Paul's Cathedral. 

Empty boxes & Easter brunch- Thanks for the flowers, Jens! 

We began the calls Monday morning to his new CF coordinator at UPMC, as well as to the transplant coordinator. By afternoon's end, we have a plan in place to get IV meds, an appointment on Wednesday in the CF clinic, and he is officially listed as "active" on the transplant list. Whew! What an afternoon! 

If we are being completely honest, we're not ready for this. We're still working on getting settled in our new place. We've met 2 people in Pittsburgh, outside of the leasing office of our apartment building, and we think we know a few good routes to the hospital. We're learning how to navigate a new city and new grocery stores. We're dealing with a different hospital and their system of how they will change his port, deliver his IV meds, and see him in the clinic. There is so much newness to our lives right now, and it's all happened so fast. We know this is why we're here, but that doesn't mean that we're ready for this. 

So begins, officially, our journey of always having our phones charged, always picking up calls from 412 numbers, always being "ready" to go. 

See pictures from the move to Pittsburgh at: https://www.facebook.com/media/set/?set=a.1583287755228941.1073741832.1521562651401452&type=3

April- National Organ Donation Month

(Originally published on 4/21/14 on cotaforjensh.com)

Are you an organ donor? Jens’s transplant will not be possible without the gift of an organ donation. Many of you have asked when his surgery will be. Since his is listed on the transplant list for a double lung transplant, we are in need of a deceased donor. 

From the Donate Life website: 
In order for a person to become an organ donor, blood and oxygen must flow through the organs until the time of recovery to ensure viability. This requires that a person die under circumstances that have resulted in an irreparable neurological injury, usually from massive trauma to the brain such as aneurysm, stroke or automobile accident. Only after all efforts to save the patient’s life have been exhausted, tests are performed to confirm the absence of brain or brain stem activity, and brain death has been declared, is donation a possibility. The state donor registry is searched to determine if the patient has personally consented to donation. If the potential donor is not found on the registry, his or her legally authorized representative (usually a spouse, relative or close friend) is offered the opportunity to authorize the donation. Once the donation decision is established, the family is asked to provide a medical and social history. Donation professionals determine which organs can be transplanted and to which patients on the national transplant waiting list the organs are to be allocated. 

How organs are matched: 
http://www.transplantliving.org/before-the-transplant/about-organ-allocation/matching-organs/ 

We encourage all of you to consider becoming organ donors. The lungs Jens receives give him the gift of life.

http://donatelife.net/

The Moving Plan

(Originally published on 4/9/14 on cotaforjensh.com)

Happy Masters Week! Wait, no that's not what we're focused on this week...

It's my last week of teaching, our last full week in Nashville, our last week of packing (Hallelujah!!). Forgive my writing today, as things are a bit crazy and scattered. We're looking ahead toward the prize of one day not living out of boxes or staying at school past my students' bedtimes!

My last day with the kids is on Friday. The long-term sub shadowed me today, and while I know they are going to be fine, I'm trying to make the transition as easy as possible on them and on her and on my fabulous team. Thank you for all of your prayers for them, as well!

These ladies will keep The Rookery in good hands! 

"See you soon" send off: https://www.facebook.com/events/268725489962716/ 
Saturday, April 15, 1:00-3:00 PM 
Come say "See you soon" and give us a hug. 
Stick around the park to play or eat from the food trucks. (note: VERY informal! We don't have time to plan a party! :) ) 

Ways to help us move: http://www.signupgenius.com/go/10C0E44ACAB2AA0FE3-moving 
The moving plan: 
We will partially pack up the truck on Monday evening. On Tuesday, we will finish packing, with a departure time around noon. (HUGE shout out to our friend Brett who offered to help drive the truck and be a set of helping hands to unload in Pittsburgh!) We will drive 6 hours to Columbus, since we wouldn't make it to Pittsburgh before the leasing office closed anyways. On Wednesday, we will drive the remaining 3.5 hours to Pittsburgh and unload there. WHEW!

Excellent Care

(Originally published on 4/9/14 on cotaforjensh.com)

In response to what I wrote last week about VUMC’s “Excellent Care,” I realized that it wasn’t fair that I just leave it at what I said earlier…

Jens is an excellent patient. He never misses a breathing treatment. He takes the pills and does his IV meds at the crazy times that he’s required to do so. He knows his own body, and he’s learned to listen to when he needs a treatment or when it’s time to start IVs again. These days, his days are scheduled by his breathing routines. All of this greatly affects his eating schedule, as he cannot do the coughing and shaking (with the vest) necessary if he has just eaten. Many of his medicines also affect his eating schedule because some require him to take them with food and others have to be taken # of hours before/after eating. He is always thinking of what he has to do next, or doing the math in his head to see how long it is until his next thing.

Cystic Fibrosis Centers across the country operate on a “team model.” On the team are pulmonologists, nurses, nutritionists, social workers, respiratory therapists, and more. This serves to help the whole patient. Many other diseases also take this approach to patient care. With this model, the medical staff can work together to address many of the needs of their patients- and it doesn’t matter who is “on call” or “in the office” that day, as they regularly meet to talk about patients in team meetings. It’s a great model, and one that gives the patient a great sense of care. After being in Nashville over 10 years, these doctors, nurses, and others know Jens’s case very well here at Vanderbilt.

When he is admitted to the hospital, however, these doctors, residents, fellows, nurses, care partners, and respiratory therapists haven’t been sitting in on those team meetings. There is no “CF Floor” in the hospital, where Jens can be cared for by only those doctors and nurses who know his case.

I wanted to clarify my comments made in the last blog about not receiving “excellent care” at VUMC. On this visit, and on the last admission, to Vanderbilt Hospital, we did not receive excellent care over the weekend when Jens was on the “normal” floors. He missed breathing treatments because respiratory therapists didn’t come. (Which is a complete joke because he does these same treatments with the same meds every day at home 3-4 times per day. If we would have been able to know they were never going to show up, I would have run home to get his supplies.) The nurses were upset with him when he wouldn’t take certain meds when they scanned them. (Like I said, Jens is compliant, but he also knows the schedule of these meds and how they affect his breathing treatments and eating schedules.) After asking for a day and a half, Jens finally got bottled water delivered with his meals. (Why, on the menu, do they offer patients sodas, chocolate milk, and sweet tea in hospitals? Aren’t we trying to help someone heal and be healthier? We can only drink sugar?!?!)

In light of the weekend hospital stays where Jens is dealing with residents instead of his pulmonologists, being on floors where the nurses treat patients with [fill in the blank] disease instead of CF, we DO receive excellent care from many of his doctors, nurses, and others at VUMC.

Like Bethany- the ER nurse we had Saturday (and once or twice before) who came over to me to offer support, as I began to cry after the crowd of doctors left and Jens was finally calming down.

Like Hailey- the ICU nurse on Saturday who was fantastic about being attentive, yet giving us our space. She stayed on top of his meds, respiratory therapists, and the meal delivery people to make sure things happened when they needed to.

Like all of the other nurses we’ve had while admitted that have been GOOD, attentive, and efficient. It helps the healing process so much to feel like we’re in good, capable hands.

Like Dr. Willers, Dr. Slovis, and the other CF doctors- his CF team here in Nashville has done a great job the past 10 years helping to manage Jens’s health. They’ve seen the ups and downs, and we appreciate their wisdom and knowledge, as well as their personal care they give to Jens.

Like Danett- the CF nurse who we offered to come live in the guest bedroom in Pittsburgh. We cannot begin to explain the EXCELLENT and EXCEPTIONAL care she has given to Jens over the years. She truly goes above and beyond the call of duty: she checks in on him at least once a week, as well as flawlessly schedules his appointments, port changes, and more. When he is admitted to the hospital, Danett often visits him on her lunch breaks. And, as one of Jens’s biggest prayer warriors, we have always felt that she is one of Jens’s number one fans, always helping him to be the best he can be. We guarantee there’s not a better CF nurse in the country, and we are so thankful for the excellent care she’s given to Jens the past 10+ years!

Abby & Jens with Danett in October 2014 (The magic of updating blogs!)

Nashville "See you soon!"

(Originally published on 4/6/14 on cotaforjensh.com)

Come say "See you soon" to Jens and Abby as they get ready to leave Nashville. They will be hanging out near the tennis courts/playground at Elmington Park from 1-3 pm (then Jens will have to do a breathing treatment and Abby will continue packing). Come give them a hug and say "See you soon!"

FYI- Food trucks often hang around the park on the weekends if you want to eat anything.

A Wild Weekend

(Originally published on 4/2/14 on cotaforjensh.com)

Over the past year, Jens has been prescribed steroids more often than in the past to help fight infections. The increased steroid use can lead to issues with bone strength. He had a procedure on Friday to help strengthen his bones before transplant. The options were to get a once yearly injection of a medicine called "Reclast," or take pills every few days. Since Jens will have a crazy pill regimen after transplant, we opted for the one injection. One of the side effects is flu-like symptoms, but to lessen the severity and chance of it, we decided to have it infused over one hour.

A few hours after the procedure, Jens started feeling a little weak. After his last treatment was over at 1 AM, his chest was aching. This made it very hard for him to breathe. He told me that he felt like he couldn't take a deep breath. I knew something was wrong because Jens isn't even able to take the same "deep breaths" that you and I know. I have heard someone compare a CF patient's breathing to a normal person breathing through a straw. 

We stuck to the recommended Tylenol schedule and he drank lots of water. However, the pain worsened, and when the alarm went off at 5:30 AM for his hourly water intake, he took his pulse. It was an alarming 190+, and his O2 saturation percentage was 77. (His heart rate is usually in the 100-110 range, and the O2 saturation should stay above 90.)

We rushed to the ER, and they took him straight back. There were more medical staff members in the room than I've ever seen, causing me to have to step outside as they began treatment. They eventually lowered his HR to the 140-150 range, while he was on a high-flow oxygen mask.

We then went to the Medical ICU floor, where they started a bi-pap machine to help force positive oxygen into his lungs. He was on this machine for a few hours, eventually helping his HR back to its normal range in the low 100s.

At that point, it was close to 1 PM, and he was worn out! His body had been working at a higher rate for at least 9 hours, if not more! He felt achy, especially in his chest area, but he was able to come off of the bi-pap machine, taking oxygen in through his typical nasal canula.

He stayed in the hospital until Monday afternoon/evening. I'll spare you all the details of the "not-so excellent care" that we received on Sunday and Monday, with messed up medicine and breathing treatment schedules. ("Excellent care" is a goal that the staff at VUMC writes on your board in your room.)

  We knew things were better when Jens wanted to take a funny picture to put on the blog!

We are glad to be home, as we are spending each night packing a different room or cleaning out a different space in our apartments. I am teaching through next Friday, if all of the paperwork goes through as planned (fingers crossed we don't have any bumps there!). 

So many of you continue to ask what you can do to help. 

1. We appreciate your prayers. You can also pray for my students, as this is tough on their 7-8 year old hearts too. Big thanks to the 2nd grade team and my school's office staff for all of their help! 

2. I hope to put together some sort of "sign up" to help us come load boxes into the moving truck, etc. Nashville & Pittsburgh people- look out! 

3. We are hoping to have some sort of "send off" next weekend in Nashville at the park where we can just give hugs before we go. We have both lived her over 10 years now, and we hold our friendships here close to our hearts. 

As always, if you're not keeping up with the Facebook page, you're missing the more immediate updates. You can "like" Lungs 4 Jens on Facebook to have the updates come on your News Feed. Or, you can just go to www.facebook.com/lungs4jens just like you would any other webpage. 

We are looking forward to "Eat the Fridge/Freezer" week to be done, so that we can eat at all of our favorite Nashville restaurants next week before we go! 

Abby & Jens