Allie was discharged from UPMC Presbyterian 5 days ago, on Thursday March 22. I can definitely see that she is getting a little stronger every day. She had a hard weekend but we realized from results of her blood work yesterday that her tacrolimus level was very high, a little over 20 which the was main reason she was feeling so poorly, lots of difficult side effects from being at a toxic level. Two rounds of tacro were held and she’ll restart a lower dose this evening. She’s already feeling much better. She’s developed neuropathy, likely from the antirejection medication, which is causing a searing, burning pain in her fingers and feet. She’s started on gabapentin to hopefully counteract this symptom. PT started yesterday to help her get some muscle back. She was down to 107 pounds and very weak after months in bed on a vent, but she’s walking every day now without any assistance and has started doing the prescribed exercises. She had all her incision staples removed today (can you guess how many?). Her trach site is mostly healed, enough where she doesn’t need to keep a dressing on it any longer, and is no longer “whistling” from air leaking. The NP showed us the pathology pictures of her lungs that were removed and it’s amazing she was able to do what she was doing with so little actual usuable lung tissue.  Her O2 sats now with her new lungs are anywhere from 95-98% without oxygen. She is actually having her oxygen tanks at home sent back since she is free from having to wear that. And no more prolonged episodes of coughing. Hardly any coughing at all! Pretty amazing. It’s actually been an adjustment to go to bed without a nasal cannula on and the sound of an oxygen concentrator.  

We are so thankful for the courage of her donor family to give her this gift, truly a gift of life, in the midst of their own pain and loss. We continue to thank her incredible surgical and medical team as well as all our wonderful friends and family who are supporting us in every way imaginable.

This weekend will be a Pasta Dinner Fundraiser. There will be amazing food, raffles for gift baskets and some awesome prizes and even an Easter Bunny! Please share with your friends and relatives. Tickets are available from Maria or Kristina Shamp. Please see the flyer under events.