It was about 1:12 a.m. on Halloween when my phone rang. I couldn't believe it. It was THE call … the call that meant my long wait on the lung transplantation list was finally coming to an end. As soon as I got off the phone, I busted into my sister Laima's room and woke her up. After four sleepless hours, we made our way to the hospital and the nurses did their beginning assessment. Then, people started coming in left and right for blood work, X-rays, and other tests.
Halloween, first call, Laima and I eagerly waiting.
Hunger, nerves, and a lack of sleep had started to get to me, and I was getting annoyed with the seemingly endless wait for my new lungs. After 19 hours, I was finally wheeled down to pre-op, and then it was time to go into the operating room (OR). I gave my sister a few hugs and said a few last words, and was wheeled away toward my shiny new air bags. “This is it. The wait is over,” I thought as they put the oxygen mask on my face. As they told me to breathe in deeply, I crossed my fingers and tried to stay awake as long as I could before the anesthesia kicked in and knocked me out.
I woke up slowly -- groggy and uncomfortable as the breathing tube was pulled out. Although I still had anesthesia in my system and couldn't keep my eyes open, I had enough sense to choke out the question, “Did I get my new lungs?” “No,” they said. My heart immediately sank.
Once I was brought into the recovery area, my OR nurse came to talk to me. As soon as she gave me a hug to say how sorry she was that the lungs didn't happen, I fell apart. When I saw Laima in the intensive care unit (ICU) the next morning, I started crying again as she hugged me. We were both sad that the donor lungs didn't work out. After I was able to leave the next day, we were still heartbroken, but decided that we couldn't be upset any longer and had to move on. Onto the next one, whenever that would be!
Life returned to normal until April Fools' Day. My sister and I were having a picnic by the Mississippi River, when my phone rang with a strange area code. It was the call. Again.
We made our way to the hospital where we were met with a flurry of nurses and technicians who started blood work, tests, and X-rays. Then, there was a lull. We decided this time that we wouldn't tell as many people or share on social media until we knew the lungs were a definite.
As I was about to take my second shower with the disinfecting soap, my nurse came in and told me that the surgery was canceled. Was this some sort of sick April Fools' joke? Once again, the news broke my heart. But after last time, I had put up some armor and tampered my expectations just in case it was another dry run.
April Fools, second call.
Then, about two months ago, I was doing my evening vest and nebulizer treatments when my phone started ringing. It was after 9 p.m. and a 612 area code, so I knew who was calling. I had already had two dry runs, so I knew there was always the possibility of a third. This time, however, it was a low-risk donor who was not on life support, so all we could do was keep hoping that the third time would be the charm. The next day, I found myself back in the hospital being wheeled toward the OR and being put to sleep, once again.
This time, I woke up groggy and half-asleep, but with the breathing tube still in, a heavy feeling in my chest, and wires everywhere. I smiled inside, because I knew what they meant: I had finally received my new lungs. What a wonderful Mother's Day gift to my mom. (That's right … I got my transplant on Mother's Day. Life has a sense of humor, I guess!)
Growing up with CF, I've learned to always be ready for a plan B, and my lung transplantation experience was no exception. For those with CF who are on the transplant waiting list, my advice to you is to always be prepared and know that anything can happen. Be ready for the possibility of a dry run (or several dry runs), and don't be afraid to second guess when it comes to your own CF care.