Chasing Air: My Quest for a Lung Transplant Journey (Part 1)

“Well, the other doctors usually send me in to talk with patients about needing a transplant. I have to tell you that you need to go on the list. You only have 6 months to live based on your lung function trajectory.” The doctor's words were direct, yet filled with care, emphasizing the urgency of the situation. He knew I was stubborn, dragging this decision out, and he was aware of my health journey, having just graduated pharmacy school with my doctorate.

Reflecting on those challenging times, completing pharmacy school with rotations while ensuring I stayed alive to walk down the aisle was incredibly difficult. Staring at him and trying to hold back the tears of acceptance, I caved in.

I was so tired of feeling defeated and angry at myself. I looked at his chart; the numbers of my lung function seemed distant, yet there it all was—my whole past several years all represented in a simple line graph plummeting down to the end of the page, the end of my life. I knew it, and I laughed through the tears at it and my silly stubbornness.

“Well, you know, only God knows when we will truly die.” That was all I could say. He smiled warmly and continued to tell me all about his experience with chronic lung disease and death. As a healthcare provider, I knew what he said was correct, that I did need this. As a young woman in her mid-twenties, I just screamed inside.

Cystic fibrosis handed me this 'wonderful' outcome, and I say that very sarcastically. This genetic disease disrupts the function of cilia in our lungs. As a result, over time, the buildup of mucus and bacteria in our lungs damages and clogs the airways, leading to a decline in lung function. The oxygen we breathe in has nowhere to go in our lungs and can't be absorbed by the body. The progression varies for everyone, depending on their unique situation, the bacteria that grow in their lungs, and the extent of the damage.

Upon my diagnosis with CF, I was informed that the average lifespan was around 18 years old. With medical advancements, this life expectancy has changed. Honestly, I never paid much attention to it because I was too busy living the life God gave me to the fullest. This was the reason I needed a double lung transplant. My lung function at this point, if I remember correctly, was around 20%.

While working full time as a pharmacist, I finally began embracing the use of oxygen, and honestly, I felt so much better wearing it. As I adapted to life with oxygen, the prospect of a lung transplant became a crucial consideration.

The whole process to determine if you are a candidate for a lung transplant is about a week long. You undergo various appointments to conduct comprehensive compatibility testing. Although every clinic may differ to some degree, most follow the same rigorous testing. They analyze every aspect of your blood to match you with the perfect donor, minimizing the chances of rejection—where your body doesn't recognize the lungs and attacks them. Rejection is one of the worst things that can happen after a transplant, and with lungs, your chances are higher for a longer time. After the week of testing, they call you to let you know if you are approved.

I received approval; however, based on my blood work, I was informed that several factors would make it harder to find suitable lungs. In essence, I would be waiting a while.

Undeterred, I returned to work and attempted to get on with my life as best I could, even going on a camping trip and float trip while dragging oxygen tanks with me. Why not?