For those who know me, being scared isn’t an emotion I often portray. Having survived my struggles with cystic fibrosis and receiving my new lease on life at age 33, I thought that only better days were ahead. The thought that I would one day be back in this position – waiting for the evaluation, waiting to be listed, waiting for “the call” – never occurred to me prior to my first transplant. At that time, I was full of hope and assuredness that the transplant would eventually happen and all would be well.
When I look back on that time now, I feel quite silly not knowing what I should have known. Prior to my first transplant, my main concern was receiving new lungs and having the ability to breathe freely. Unfortunately, naivety can happen when you’re too self confident. And although I’d like to blame my lack of knowledge on those charged with feeding information to me prior to transplant during all the “What-to-Expect” workshops and the like, it was my responsibility to know the basic challenges of receiving such a gift before accepting it.
So today, nearly six years after my first transplant, I’m faced with the incredible task of bilateral lung transplant all over again due to the chronic rejection of which I was shamefully unaware. Having been on this downward cycle for nearly two years, I know all too well that things aren’t going to get better without another life saving miracle. And I’m scared. Scared that the evaluation won’t go well, scared that I won’t be listed, and scared that I won’t receive “the call” that lungs are available. But mostly, I’m scared of what will happen to my family if I don’t receive another chance.