My daughter is 10 years old and has cystic fibrosis.
In response to your questions, each person responds differently to the disease. It affects lungs, bowels, child bearing, etc. Many cfers are malnourished, until either feeding tubes or just enzymes are introduced. My daughter takes enzymes and has had a feeding tube for a year. We love it. She has gained weight, finally. There are so many aspects of this disease. I don't know where to start. Just be sure you find a good doctor (cf specialist are available in Memphis, TN at Bowld Hospital) for adults. A friend of ours who is 18 has just started going to Bowld. He went to LeBonheur until he turned 18. My daughter goes to LeBonheur and sees Dr. Schoumacher. There is a Dr. Hanissian at Baptist East. We have seen him before too. I have heard there are good cf doctors in Jackson, MS but haven't seen any. Also, Birmingham has a transplant program. Okay, I dont want to overwhelm you. You have probably heard a lot of information from the doctor. Give it a week to sink in. Write specific questions and I will try to answer them.
Let me say that the scariest part of the disease for us was when Valerie was first diagnosed. She was 8 days old. Doctors told us she may not live to be a teenager. She would be in the hospital at least once a year for "tune-ups", probably would have to be home-schooled, let her do what she can - while she can, etc. Let me say I am not trying to scare you. My point is--- Valerie is very active. She was in the hospital 6 times last year - one for surgery to get feeding tube, rest for tune ups. She has not been in the hospital this year except the stay that ended in January but she actually went in in December, so it is really last year. She pitches fast pitch softball, rides three wheelers, go carts, got to Make A Wish (there are organizations that do wishes for adults, too--check into it), goes to school(A-B student), plays soccer, and does everything my other 2 children do. Things are not always the way they are predicted to be. Good Luck with your husband. Tell him to mind the doctors, question everything, and eat, eat, eat!!!!!!!
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Sue - mom of 3, one with cystic fibrosis
[This message has been edited by moderator2 (edited 08-10-2002).]
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Sue - mom of 3, one with cystic fibrosis
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