Warning: the linked article contains some discussion about some adult situations that aren't suitable for children to read.
This is a great glimpse at the lives of CFers.
Every person with a chronic disease must decide what kind of balance between quality and quantity of life they will live by. Risks. While we are extremely cautious and consider everything that we do (when our lives are more "normal"), Tricia has always been willing to take a certain amount of risk to have a greater quality of life (being able to enjoy life), knowing that the consequences could shorten her quantity of life. Even something as simple as going out to eat or riding in a friend's car could have monumental affects.
And, with a double lung transplant, we're going to have to take even more precautions. But, fortunately, transplants also give people the opportunity to live longer and fuller lives.
When Tricia was young, and a patient at CHOP, CFers were often placed in the same room with each other. Although we now understand how dangerous that was for them, it was a great experience for Tricia, helping her to be more willing to share about her disease with others.
Many of her friends from those days are no longer alive (whether or not to do with the living conditions at CHOP at the time is unknown). Because of the CFF and the millions who have donated, we now understand, more fully, the risks that are involved with this disease and the care that can allow CFers to live a more normal life.
PS. Bill Taub (quoted in the article) is on Tricia's CF Team and a very good friend. I'll be hanging out with him tomorrow, probably near the food court in Duke South, talking with people about CF.