I agree witn Karen that its great you're doing a school reoprt on cf. What a great way to learn about what your cousin deals with. My niece did a paper on cf after my daughter was born with it, and she has been very helpful in educating the rest of our family. Good for you. First, you should know that the average life expectancy of cf patients is in the mid-30's. Not long ago it was 8-12 years, like the doctors apparently told your cousin's family. But, there are many many people who post here who are in their 20's, 30's and 40's and living very productive and relatively healthy lives. As far as what people with cf have to do differently, there are many medications that most cfer's have to take. My daughter who is 4 1/2 months takes an enzyme everytime she eats to help her body digest food, she takes antibiotics through a nebulizer (a machine and mask that help her to breathe the medicine in) to help fight lung infectionu, she takes an antacid because acid from the food she cannot digest builds up in her stomach. We also do chest physiotherapy on her two times every day. Basically we are poinding on her chest to loosen up the "Gunk" in her lungs. She's not very sick yet, thankfully, so that's all we have to do right now. For many people, though, life with cf means lots and lots of medications, lots of breathing treatments, long and frequent hospitalizations, and just generally not feeling well. Someone once compared it to feeing like you had just run ten miles, all the time. As far as how I feel about having someone I love so much have this disease... well, that's a hard one to answer. I am hopeful that she'll be as healthy as many people here have been and live to be a college graduate and mom. But I am fearlul every day that she won't. I get very excited about evey little tihng she does, but I also worry more about every little cough and spit-up...I worry much more thanI did with her older sister. I get angry a lot. It doesn't seem fair that my little girl and my family have to deal with this for the rest of our lives. I just want things to go back to normal. but they won't. This is the new normal for us. I also am more greatful for little things now than I was. So , in some ways, I've found lots of new reasons to be happy. We really found out how much our friends and family care about us after Emily was born and we found out about the cf. I love a little more freely now, I think. But I also cry more. Its all a combination of really really good stuff and really really REALLY bad stuff. That probably doesn't make too much sense. It wouldnt have made sense to me before I had to live it.
I would think again about not talking to your cousin. I teach second graders who are her age. One of them has a lot of health conditions and he got really frustrated that kids didn't understand it. I had him tell the class about what he has to do, and it made him feel really proud to be able to teach us what he knew. Every kid is different, of course, so you should tlak to your parents and your cousin's parents before talking to her, but think about it. Talking about it to you night help her deal with her feelings.
One last thing, do your cousing and her parents know about this web site? It's been the best thing that's happened to me since Em was born. I find answers to questions, reassurance and reminders to not give up hope every day. It might really help them if they're not already checking this out.
I wish you luck with your project. You'll find lots of info here and lots of people willing to help. Let us know how it goes!
Tami
mom to Isabelle 3 yo no cf
and Emily 4 1/2 month w/cf
