im being tested for CF

[anonymous]

I'm 14 years old and i have probable CF.
When I was about 3, the doctors tested me for it because i had oily stools and constant stomache aches, but it came back negative.
Since then, I've had stomach aches almost every day for my whole life pretty much. I didn't really pay much attention to them though.
Last year, I got really sick for about 11 months. The doctors said it was mono...but they never said for sure. Thats when I got sent to the GI. He did some testing but never gave me an answer either. NOw that I'm all better, they think I might have CF. I have lots of the symptoms including wheezing and constant coughing, and when im not coughing, i have phlegm, really salty skin and sweat, abdominal pain and bloatedness, fatigue, and i am always sick. Just when i get rid of a cold, i get another one, for the past 2 months. Also, my liver was swollen for quite a while, and now my pancreas is swollen and in the ultrasound it showed up..weird..lol i dont know exactly what was wrong with it.
I kinda have this gut feeling that i have it.
The only people that know about it so far are my parents, and 5 of my closest friends. No one seems to worried about it, except my boyfriend. Im really upset that no one will talk to me about it. When I told them, they just got uncomfortable about it and changed the subject.
I wont find out the results for at least a couple weeks.
Do you have any advice on feeling better, or talking to people about it?

Thanks

Avril

 

[JazzysMom]

I think not knowing is harder than actually knowing. Once you get a definite answer on things you can proceded. People might not want to talk about it because CF is serious business. The negative sweat test at 3 could be an error or maybe just not enough sweat. Its very important that the test be done by an accredited CF center & often a blood test must be done in addition to confirm what mutations of the genes you have. If you do have CF...once you get on meds & start a routine you will feel a big difference & wish that you had answers a long time ago. Its a lot for people to handle so all I can say is be patient with people. You are old enough that you can be responsible for much of your own care. That is good and bad depending on how you handle that responsibility. I suggest you keep a journal of ??? or concerns that you might have that can be addressed with the doctors. This will make it easier on you to learn and then educate others. If you have any ??? or need to vent, that is what we are here for!