Alyssa’s Second Lung Transplant

It’s important for me to also note that a few hours after Alyssa entered surgery, I received a picture from one of my best friends Alec. He sent me a picture of his tattoo that he happened to have scheduled on June 2nd at noon. The tattoo was in honor of Alyssa and I. It’s a rose that says ‘Just Breathe’ above it. Alyssa will be so excited when she gets a chance to see it.

I can’t even begin to imagine the rollercoaster of emotions Alyssa went through over those few weeks and the previous months. But as a family, it’s difficult, but possible, to explain how we felt.

Alyssa began her downhill slide, which would turn out to be Bronchiolits Obliterans Syndrome (BOS or more commonly called chronic rejection), back in November. She was getting short of breath a bit more often and taking a bit more time to recover. We didn’t think it was something too serious but as the next few months passed, with each monthly appointment, her PFTs dropped more and more, with the rate seeming to increase. In February, after all other options had been exhausted––chronic rejection is aggressive and there isn’t time to spare––she tried a nasty drug called campath. The list of potential side effects is longer than the IRS tax code. As we all know, it didn’t work.

Which leads us to now. The last month, in hindsight, has moved at a breakneck pace. A month ago, I finished my finals. A few days after that, I had my commencement and Alyssa was going through final evaluations to be listed. The next week, we met Dr. Shafii, her surgeon, who wanted to meet Alyssa to first assess her support system and mindset before going through with the retransplant. That meeting, we were disappointed. We thought she was going to be officially listed on that day, which was Thursday, May 12th. Unfortunately, they had to have one more meeting to discuss her as a candidate. We would receive the go-ahead that she was listed less than a week later, on Wednesday, May 18th. The next couple days were hectic, but exciting. We had a ton of family come in for the CF walk, which also happened to be on the same day as Alyssa’s 3 year lung-a-versary. We were so overwhelmed with all the love and support on the day of the walk, we were holding out hope that we’d get the call that day. Sure enough, we didn’t and the next week went by with nothing extraordinary happening.

Then Addie came in on Tuesday, May 31st. After I met Addie that evening, her and Alyssa were sitting on the couch watching something and laughing and as I walked into the other room, I said to Addie, “You better not unpack! You’ll need your bag for when Alyssa gets the call.” Of course I held out hope that would be the case, but I wasn’t exactly expecting it. 24 hours later, we were on our way to the hospital for Alyssa to begin being prepped.

To say Alyssa was in good spirits throughout the night before the surgery is a vast underrepresentation of how incredibly inspiring she was. Alyssa was happy, relieved, excited, laid-back, and easy-going with a small hint of nervousness. I was blown away. Even with my history of surgeries and being at hospitals as much as I have, I couldn’t even fathom being prepped for a surgery where they would literally remove the breathing vessels out of my chest to place another pair in. Clearly the first time around, I wasn’t blown away by the sheer magnitude of how amazing human potential has reached the point where they can literally trade organs between two individuals. We have the utmost gratitude for Alyssa’s two donor families and the doctors that have treated her over the years at Methodist and UK. We will never be able to fully thank them for taking care of Alyssa.