Personal insights on the lung transplantation journey to abundant life
Compiled with assistance from the Cystic Fibrosis Family Connection (CFFC) in Rochester, NY
Lung transplantation is becoming a more viable option for people living with CF. My husband received his transplant in New York City at NY Presbyterian/Columbia in 2012 when he was 45. We’re sharing our story in the hope that it makes your path a bit smoother.
At many times during our journey, we were overwhelmed by the new experiences – decisions and adjustments we had to make: travel arrangements, adapting to a new medical model and team, and finances, not to mention developing a new mindset and routine. These are all challenges that we encountered and that you will be – or are – facing.
But take heart! There’s abundant life at the end of your journey.We have found that post-transplant life has been quite different from both what we expected and what ‘normal’ life with CF had been (see After Transplant – Long term). If you’d like some encouragement before delving into the challenges, check out A Personal Note for the benefits we received for our efforts.
So, how do you run a marathon? One step at a time. To make planning your transplant journey more manageable, it can help to break the big picture into smaller pieces. We laid out the steps of our journey in the order we took them. That said, we will start with a couple of things you will deal with throughout the journey. Here are the pieces:
We feel that we would have been better prepared had we known some of the information presented on the following pages. We suggest you look at the entire journey since knowing what you will face down the line can help you make better decisions today. May it be helpful to you!