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.