I have been reading MDC for many months, but I finally decided to join, because I wanted to send you a message. I am not a parent of a child with Cystic Fibrosis, and I don't know whether I can answer your questions, but I wanted to share my experience with you.
My fiance has CF. He is 27 years old. He recently had a double-lung transplant. We are able to dream and plan for a future together. It has been a very long and difficult journey, and CF is a large part of his life - but, it is only part of his life, it does not define him, and it does not prevent him from living in this world, and making the most out of each and every moment. Attitude is (and has been) everything.
His advice? "Hang in there" and "Try everything". His family has fought very hard to keep him alive. We have regular clinic appointments. We do a lot of research. We ask a lot of questions. He also follows a strict routine of medications and exercise. The double-lung transplant has changed his life in many ways. Of course, it is not a cure, and in some sense, it is an exchange of one set of problems for another, but it has significantly improved his quality of life, and will hopefully extend his life for many (many) years.
It is difficult to articulate the impact of CF on his life. It certainly has changed over time. He speaks of having a relatively "normal" childhood. He has always been followed by a CF clinic. He has had several hospitalizations for lung infections throughout his life. He has a port in his chest. He also had a PEG tube for a few years. (Weight gain continues to be difficult). Medications have always been part of his daily routine. PT was also important as a child.
I wish you the very best. I'm also happy to try to answer to answer some more of your questions.
There is a lot of hope for individuals with CF to live long, fulfilling lives.
Edited by treehugger86 - 7/25/11 at 1:57pm
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