Listed – Weeks 3 & 4

We had our first dry run last Saturday (December 6th). Our transplant nurse practitioner, Tiffany, called around 1pm and said “we have lungs!”. She told us to sit tight until they received some more information. As if we were going anywhere… but we did sit tight, and around 2:15pm, Tiffany called back and said that it was only a single lung and we needed a pair, so it was a no go.

It was pretty disappointing, but at the same time, it was very encouraging that we got our first call only two weeks after being listed. It’s been a very nerve racking several weeks knowing that Anya could get “the call” at any time now. She could get the call tonight and be in surgery by tomorrow morning…it could be that fast.  Scary, but I know that the transplant is the ultimate goal.

Rick and Kim, two the best physical therapists, helping Anya walk

Rick and Kim, two of our favorite physical therapists, helping Anya walk

Anya’s been doing well.  She’s been walking at least 5 days a week.  Yesterday, she walked 5 figure eights around the floor, which equates to about 2720 feet and she only stopped twice.  She also walked two laps in the morning, so seven laps total for the day was the most that she’s walked in one day since we’ve been here.

Her recent sputum cultures didn’t grow out anything significant, except for a very minute trace of CMV, which the team was not too worried about because the sputum cultures come from the trach tube, which could be contaminated.  There has been no other positive mycobacterium abscessus culture since the July.  In terms of infection, she hasn’t produced much mucus lately, which is a good sign that the infection is under control.  She’s still on a pretty strong antibiotic called Zyvox and I think, Bactrim, to help with the abscessus.  She’ll most likely be on these two drugs even after transplant, for a good 6 months to a year.

Anya and dad

Anya and dad

Her weight has been pretty steady over the past few weeks.  Her weight went up to around 88 pounds a few weeks ago, but we think some of that was water weight.  The team has been giving her Lasix, which is a diuretic to help reduce the swelling.  Yesterday, Anya weighed 84 pounds, which puts her BMI at 16.4.   She’s been hovering around this area for a few weeks now.  We switched her tube feeding formula to a less caloric dense formula yesterday….1.2 calories per ml versus 2.0 ml in hopes of fixing her diarrhea issues.  Instead of getting 3,120 calories per day, she’s getting 2,448 calories now, with the hopes of retaining and digesting more of those calories.  We’ll see how that goes.

donation service area - texas - lifegiftOverall, things are going well.  We’re just waiting for a good set of lungs now.  I just checked the OPTN website and Anya is now at the top of the list for her blood type (B) in our donation service area (DSA), which is LifeGift Organ Donation Center.  Our DSA covers all of Houston and some of the surrounding area, so I really don’t think that it will be too much longer now.  I found this picture of our DSA:

BTW…here is our current address for anyone wanting to send christmas cards or anything…some of you have asked for it:

Anya Crum, 6441 Main Street Room 528, Houston, TX 77030

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