Approved

(Originally published on 3/27/14 on cotaforjensh.com)

Many of you have been sweet to ask the past few days if we've received any news yet. The transplant coordinator called today to tell us that Jens has been "approved" to be put on the transplant list. (This is what we anticipated to happen.)

At this point, we are waiting on them to receive all of the necessary paperwork and documentation of the medical testing required for transplant. Once that happens, they push that through to the insurance company for them to approve the transplant.

Of course, they won't "actively" put Jens on the transplant list until we are in Pittsburgh. We are continuing to work out some details for housing, but we are thinking of starting a lease around mid-April- maybe April 15 or possibly the week after Easter.

In the meantime, we're selling what we can on Craigslist, packing everything else, and Jens is continuing his health routine. I am teaching 2 more weeks, possibly 3. We are waiting to get my leave of absence officially approved. We did get to have a fun night out to see Wicked at TPAC on Wednesday night!

Pittsburgh Recap

(Originally published on 3/22/14 on cotaforjensh.com)

We are back in Nashville after the evaluation in Pittsburgh. Due to our “home” location, they tried to shorten our visit by scheduling appointments only on Monday, Tuesday, and Wednesday. While this is nice of them, it makes for some long, exhausting days at the hospital. On top of the usual tests and visits with various members of the transplant team, this evaluation was different because we were looking for a place to live as well. While Jens completed some tests that didn’t require her to be there, Abby was out and about in Pittsburgh looking at places. 

Here’s the brief synopsis of what came about this trip to Pittsburgh… 

1. We found some EXCELLENT options for housing. We currently feel like we’re on House Hunters, discussing the pros/cons of each place. We feel confident we have somewhere that meets our needs- especially the need to be a newer, clean place. 

2. The “transplant team” (made up of the CF pulmonologists, surgeons, fellows, social worker, nutritionist, pharmacist, and transplant coordinators) will meet on Tuesday (March 25) to discuss whether they believe, based on the test results and talking with us, if it is time to list Jens on the transplant list. We will get a call on Wednesday or Thursday to let us know of their decision. At this point, based on our conversations with them, we expect that they will agree that it is time for him to be listed. 

3. A misconception we had was that Jens would be active as soon as they made that decision. However, we learned that they will probably call us to say that yes, it is time, but he won’t be active right away because they need him to finish some tests and get documentation of things like vaccines and tests run at Vanderbilt in the past few months. They expect this to take 3-4 weeks, which would require us to be in Pittsburgh sometime between April 15- May 1. 

4. Once he is on the list, we are supposed to carry on with life as normal. (I’ll let you know how that goes, as I would imagine every time your phone rings, your heart beats a little quicker!) When he gets “the call,” they will let him know if he is the primary or the back up. They typically call 2 potential recipients into the hospital to prep for surgery while the transplant surgeons are traveling to and surveying the organs in person. Once the surgeons examen the lungs, they decide which of the 2 potential recipients will receive the lungs, if they are in good enough shape for either. The current “record” of calls at UPMC is 10. All that to say: when we “get the call,” the transplant might not happen that time. 

5. The transplant pulmonologist shared some interesting data on survival statistics for transplants. Cystic Fibrosis patients have slightly higher survival rates in the data. The data suggests that over 60% of CF transplant patients are living 5 years after transplant. Some of the statistics are beyond me, but it was cool to look at! http://www.ishlt.org/registries/slides.asp?slides=heartLungRegistry 

Thanks for being patient with us to provide the update. We’ll keep you posted as we know more about the team’s decision, as well as the timeline for the move and “active” status on the donor list.

UPMC Evaluation Photos & Updates

(Originally published on 3/18/14 on cotaforjensh.com)

We know that some of you are loyal blog followers. We wanted you to be able to stay in the loop about what's going on this week at the transplant evaluation at UPMC. We are honestly too exhausted to share what we've been learning and test results at this time. (Don't worry- we will!) However, it is really easy to update the photos and news from my iPhone and iPad, so we're relying on Facebook and Twitter more this week while we're away from the computer.

If you have a Facebook or Twitter account, the easiest way to keep up with the pictures/updates is to "like" Lungs 4 Jens on Facebook or to "follow" Lungs 4 Jens on Twitter. (see links below)

If you are not on Facebook or Twitter, you don't have to miss out either! Everything we are doing on those sites is "public," so you can visit those pages just as you would a web page. The only difference is that since you're not on FB or Twitter, you would not be able to interact with us via those sites (unless you joined). 

Here are the sites:
www.facebook.com/Lungs4Jens 
www.twitter.com/Lungs4Jens 

Bookmark them, save them as favorites, check back every day- there's lots of good information (and great pictures) on there for you to check out.

Thanks for following us on the blog. We hope to update you all soon!
Abby (and Jens)

Evaluation Time!

(Originally published on 3/12/14 on cotaforjensh.com)

Jens outside of the Carnegie Museum of Natural History in Pittsburgh- March, 2013 

Jens, Abby, and Bob (Jens’s dad) are headed to Pittsburgh this weekend for the transplant evaluation. We realized that many of you were not aware, as we simply forgot to tell you all with the craziness of the hemoptysis a few weeks ago. Forgive us. 

The evaluation begins in Pittsburgh on March 17th. “Evaluation” means is 3-4 days of tests and meeting with the people involved in the transplant process. 

Medical Tests: 

• Echocardiogram (heart) 
• PFT (Pulmonary Function Test) 
• DESAT (Oxygen levels) 
• 6 Minute Walk (Oxygen levels while exercising) 
• Blood Work 
• Urine Analysis 
• Chest X-ray 
• CT scan of chest 
• Barium swallow (Digestive Tract) 
• VQ Scan 
• EKG 

Transplant “People”/Meetings: 

• 3 hour “orientation” (class to learn about the process) 
• Nutritionist Transplant 
• Financial Analyst 
• Transplant Coordinator 
• Transplant Surgeon 
• Transplant Pulmonologist (CF doctor) 
• Transplant Pharmacist 
• Social Services Coordinator 

In the “downtimes” and during appointments where her presence isn’t necessary (think 6 minute walk), Abby will be out at housing appointments to view apartments around the area. Fingers crossed that all of the internet researching has paid off! 

The transplant team meets the following week- usually on a Tuesday- to determine if the patient is a candidate for transplant and if it is time to actively list the patient. We feel that this is the time where they will list him as “active” on the lung transplant list. 

After that point in time, we’re not really sure what will happen… stay tuned!

Serendipity.

(Originally posted on 3/5/14 on cotaforjensh.com)

Serendipity. 

I remember learning of this word when the movie came out years ago. I remember being intrigued by how it sounded and more so- what it meant. 

For those of you who know me well, I like to plan. I like to have things organized. And, while I still lean towards these habits, a process began in me years ago to help me find freedom from the expectations of having it all together all the time. It was when I first traveled to Belize in 2007 with Sports Servants that I began to see what a change of pace, a change of expectations on a cultural level looked like. And, those of you who know my story know that serendipitous moment came when Girls Camp arose out of the tiny village of Belize, giving girls a chance to play. 

Fast forward to 2010... Nashville was experiencing some heavy snow, enough to for a true snow day on the exact day my mom and aunt had flown into town to meet my very first class of “penguins” (students). The Nashville Predators had partnered with that school, and from time to time, a ticket representative would gift the school with extra tickets to upcoming games for the teachers. I was lucky enough to get some for Saturday, January 30, so my mom, aunt, and I braved some snowy, icy roads to head to “Smashville” to watch the Preds play hockey. Because I had extra tickets, I had also invited my friend Steven, who was a huge fan. He asked if he could bring his roommate, who was also a fan. To this day, I remember sitting in section 113 and watching Steven and Jens climb the stairs to our seats to meet us. It was then that I met my future husband for the first time. 

Fast forward to 2011... Jens and I traveled to Knoxville for my good friend, Courtney and Ted’s wedding. This would be our first time traveling together. I had some ideas of what to wear and when to be where, but there were a few parts of the weekend that were unknown. It was on this trip that Jens and I coined the phrase “flexible pants.” We try to remember to pack them on trips, but we have found that we often need them in the every day tasks. I love this reminder to be open to the story that will unfold when I let go. 

Fast forward to 2014… Jens and I are preparing to leave Nashville for a season to go to Pittsburgh so that he can have a double lung transplant. It is a bittersweet time for us, knowing that we are going to leave a city we’ve both loved for the past 10+ years. We are hopeful for the adventures ahead. Being in this kind of situation causes one to be more sentimental. Coming into 2014, Jens and I decided a few things: 

1. We would always pack our “flexible pants” and be prepared to wear them 
2. We would be better about enjoying time together and enjoying one another’s presence 

We knew of the tough road we faced. We knew we’d have to fight to maintain “us.” Although we don’t like to dwell on it or let it press too far into our immediate thoughts, we know that we probably don’t have as much time together as we would like.

I spent much of the snow days on Monday and Tuesday of this week getting organized and prepared for the move to Pittsburgh and the impending lung transplant. I have been packing boxes, and of course, color-coding them based on their “destination.” I scanned medical receipts and set up Google docs to organize reimbursement expenses. I searched online for housing. I am trying to be as prepared as possible because I know that we will have to wear our infamous “flexible pants.”

Our friend Steven was in town for the weekend. As luck would have it, the Predators had a home game on Tuesday night against none other than the Pittsburgh Penguins. With Steven in town, we knew we had to go to the game on what is probably our last trip to Smashville this season. During the national anthem, I got emotional, as I let the weight of the moment sink in. I could see section 113 in front of me. I could see those steps. I could see Steven and Jens next to me. And, I could see the ring that (as of February 9) sits on my left hand reminding me of God’s story and promises for Jens and me. He is with us. Serendipity.