Our Story: Getting and Staying Organized

Perhaps it goes without saying that being organized throughout the transplant process will be a huge asset. Fortunately, I enjoy organizing, so making advanced plans, preparing lists, etc. seemed like the normal thing to do. But I’ve learned through conversations with others who have traveled the transplant path that some of our techniques would have made their journey so much easier.

Like I said, organizing is what I do. If it is not your thing, it would be good to find a partner who can help you pull things together. The sooner you can start to organize all the pieces of your transplant story, the smoother the journey will be. This is especially true at crunch times, like when you get “the call” that lungs have been found.

I’ve identified five areas where organizing has been invaluable. I think they are important enough to have a separate page devoted to each of them:

  • Support: You can’t do this alone. Building and mobilizing a support team will extend your energy.
  • Finances: Transplants are not cheap, and there are expenses beyond the medical care.
  • The Book: Information overload is a problem. You need help in gathering and retrieving important facts.
  • The Med Bag: Anyone who has lived with CF knows the importance of having all your medications handy.
  • The Lists: It’s hard to think straight when the phone rings at 1:00 AM. Having lists of essentials will help you get on the road fast.

Organizing these areas will pay benefits throughout the transplant journey. I’ve also provided some advanced planning tips on the Our Story: Waiting Period page.