I recently attended the Cystic Fibrosis Foundation Lung Transplantation Summit. Many of the areas for improvement cited by the experts matched what I have seen as the mother of a two-time double-lung transplant recipient.
After my transplant team said I was too sick to undergo a double-lung transplant, I was determined to get well enough so that I could.
After two double-lung transplants my lungs don't have CF anymore, but the rest of me still does. In a very real way, CF isn't "behind me" at all. And that's why I continue to fight.
When my mom used to ask me what I wanted to be when I grew up, I told her that I wanted to be a dad. The journey to fatherhood with cystic fibrosis is full of obstacles, but I would give anything to pass on the traits I've gained from living with this disease to a child of my own.
Although my lung transplant was the end of one story, it was also the beginning of another, more difficult story.
I made it onto the transplant list after first being rejected. After 18 months of waiting, I got the call that my new lungs were waiting for me.
I did the research. I asked the questions. I thought I knew what to expect when I had a double-lung transplant. I was surprised by what I learned.
In 2008, Brandon Rees underwent lung transplantation because his lungs had deteriorated to the point that he need a healthy pair to survive.
My exercise routine has gone through quite an evolution from college to motherhood and life on the transplant list.
Halloween, April Fools' Day, and Mother's Day may be average American holidays for most, but for me, they mark three important days in my long, emotional journey toward a new pair of lungs.