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I HAVE CF, BUT I'M CLUELESS

anonymous

New member
I am almost 17 w/cf and i have no idea what mutations I have, or what my pft's are. I never really thought much about them untill a few months ago when I found this forum and started posting. I was diagnosed with CF when I was 18 months old, I was tested b/c my brother was tested because he was having bad digestive problems. He also has CF. Infact, his digestive problems was so, that they were going to arrest my mom b/c they thought she was neglecting him. He does not really have a problem with his lungs. He has more of a problem with weight gain, which really isn't even a big problem. My problem is with my lungs. I get bronchitis all the time and I cough pretty much every day, but the doctors say I do not have an infection unless it is green. It is usually yellow or gray. I don't mean to gross anyone out. My brother was in the hospital 9 times before he turned 2 and has not been in the hospital since. I have never been in the hospital. We go to the clinic every 3 months. I also wanted to know if it is normal for me to cough up mucous every day. When we go back to the hospital in August we are going to fill out the paperwork for a Vest. I wanted to know how people fell about the Vest, does it help? Sorry this is so long. I really need someone to talk to. The only other person I know with CF is my brother, he is almost 16. We really don't talk about it. In fact no one in my family really does. My daddy has on been to like 4 of our dr visits since we started going. He always says he thinks they miss diagnosed us b/c we really aren't too sick. I know he is just in denial.
 

anonymous

New member
It is normal for you to cough everyday, I have a couple of coughing fits a couple of times a day. If you want to know what mutations you have just request a genetic test.Dave 29 w/cf
 

anonymous

New member
It sounds like you & your brother are doing great & that's wonderful.<img src="i/expressions/face-icon-small-smile.gif" border="0">At any of your CF visits, did the Dr or nurse swab the inside of your cheek w/ a big Q Tip loooking thing? If so, they probably sent this in & unless I'm mistaken (which I often am), the results of this should show your mutations.I, too am trying to get my mutation as we speak & never had thought of it until using this website!I used to be kind of clueless too, but as the saying goes....knowledge is power. If you just type cystic fibrosis into a search menu, you'll get more info than you could possibly read!
 

anonymous

New member
Hey, I'm the orignal poster. Me and my brother did get our mouths swabbed by a big Q-tip about 2 years ago. I love my doctor and nurses to death, but they really don't tell us a lot of information. I guess I will just have to ask. Well thank ya'll for the advice.
 

anonymous

New member
Time to grow up. You're almost an adult and you need to be asking questions. And I think you and your brother make a good team, and you both need to get your parents involved. As you grow older, you will rely on family tremendously. Good luck.
 

anonymous

New member
My daughter was diagnosed at 2 weeks old. The CF Clininc in St. Louis is winderful about answering her (and my) questions. Just Ask. Most of the time, we get more info than what we asked for.
 

anonymous

New member
I was dignost when I turned 30. I was clueless also. But I read anything on the net that I could and when I went in to see my lung speicalist I would ask him about questions I had on things I read. I also learned about cf clinics and demanded the choice of going to one. Since then it's been 4 yrs. I feel I am well taken care of now. My dr is very informative now but I went through several befor I found her. My family is like yours and don't want to discuss anything but I don't let that bother me. I feel we all need to educate each other and people we come in contact with so other people don't have to search for info so hard. Until I found out I had cf. Noone I knew had known about it. You need to demand information when you go to your dr. because some day you may get very sick and it could have been prevented. I wish you well!
 
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