I am going to start recommending patient resources on CysticGal. The first one is below:
The single best resource I have come upon so far is the book Sick Girl Speaks! by Tiffany Christensen. This is a book written by a fabulous cystic gal who had two double-lung transplant surgeries -that's right, two different transplants of two different lungs at a time. 6 lungs in her body over the course of her life.
I recommend this book to anyone who wants to learn about chronic illness as it is experienced from a patient perspective. I recommend it to my own friends and family who are trying to understand what I am going through right now. Tiffany and I happen to share a lot of the same views (not all, but a lot), and I find myself in the pages of this book over and over again.
You can find more info on the book at Tiffany's website, http://www.sickgirlspeaks.com/ .