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looking for a friend with cf

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Posted 7/21/2006 5:51 AM (GMT -7)

hey guys my name is bill im new to this website. i have CF but i keep on top of it by playing soccer wrestling and lacross. im 18 and am about to enter Ursinus college. I guess im just looking for someone to talk to.

-bill

Posted 7/21/2006 7:39 AM (GMT -7)
Hello Bill and welcome!

You sound like a very busy young man!  Where is Ursinus college?

Posted 7/21/2006 11:48 AM (GMT -7)
 It's in Collegeville Pennsylvania. I can't wait to go. College seems like a reallly cool place.  All the people and stuff. Its a small school though with 1600 people attending. so whats your story? how do you cope with CF?

-bill

Posted 7/23/2006 8:16 PM (GMT -7)
hi, im not in america im in australia and also 18.. do you have aim if so PM me your address? I too would like to have a chat
Posted 7/23/2006 9:53 PM (GMT -7)
ozymandias35

just IM me anytime

Posted 7/24/2006 5:45 AM (GMT -7)

Hello Bill.  I was born and raised in PA. (25 years) in a town called Latrobe (home of Arnold Palmer and Mr. Rogers and the first pro football team/game) it is about 40 miles from Pittsburgh. 

My youngest child has CF.  He is doing really well, was diagnosed last August at the age of 10 (a month away from turning 11).  Our biggest concern is his weight right now.  Hopefully we can start to get him on the growth chart.  After having a sleep study that he failed miserablely last winter, he had his tonsils and adnoids out in early Jan. He can breathe so much better now and sleeps well, although I thought he would start to put weight on.  He is on a low dosage of creon and takes adeks.

Take care.

Posted 7/24/2006 8:48 PM (GMT -7)
hello imondeck, how old is your son now? I thought they implemented the prick test for CF back in 1989 (a year after I was born unfortunately :() I was sick my whole life till 14, then was finally diagnosed monitoring my health alot better now
Posted 7/24/2006 10:21 PM (GMT -7)
wow. I dont want to imagine what life must have been like living with CF for 14 years and not knowing it. i was diagnosed at 6 weeks. How are you fareing with Cf now?
Posted 7/25/2006 6:26 AM (GMT -7)

nadabada said...
hello imondeck, how old is your son now? I thought they implemented the prick test for CF back in 1989 (a year after I was born unfortunately :() I was sick my whole life till 14, then was finally diagnosed monitoring my health alot better now

Hello and welcome :-)    He will be 12 on Sept. 9.  I believe Oklahoma didn't come on board with the newborn screening until 2004.  I have an indepth article on the newborn screening somewhere in my files if anyone is interested in reading it.

He was tested several times when he was 2 and than 4 for other things due to his failure to thrive - celiacs, heart problems, etc.... They never thought to test for CF until I pushed really hard last year. 

Posted 7/25/2006 6:07 PM (GMT -7)
newborn screening not until 2004? That's a bit rough, not to mention unfair for the suffering people would've been through being undiagnosed for a long time..

AS for not being diagnosed until 14, it was very traumatic for me and especially my mum (sometimes I think it was worse for her) going from doctor to doctor receiving medication which would only help for a very short period of time. Eventually we were referred to a lung specialist, he decided to do a sputem test which resulted in finding 'pseudomonas', surely enough he decided to do a sweat test stating that there is a low probability but better to be safe than sorry - looks like it paid off.

The reason I was so late to be diagnosed? I didnt fail to thrive just about sums it up, however I still do have an enzyme insufficiency!

ADD: Also Mr. Enzyme I have been waiting for you to be on AIM maybe I didnt add you properly.. Can you add me on 'Decjestia' that also goes for anyone else who would like to tlak about CF.
Posted 8/3/2006 6:23 PM (GMT -7)
Bill,
Good luck in school. My name is Erica and my cousin had Cf she was 24. I would love to talk to you anytime. Just e-mail me.
Erica
ericamricard@yahoo.com
Posted 8/14/2006 12:12 AM (GMT -7)
familyofcf, what do you mean she was your cousin... did she pass away?
Hi Bill, I am a CF sufferer as well. I do squad swimming three times a week and fitness and interschool sports four times a week.
Posted 8/22/2006 11:21 PM (GMT -7)
Hey Bill! My name is Emily. I'm almost 17, and I've known about my cf for the past 15 years. I was a really sick younger kid, but much better now. I ride horses, and I love playing volleyball and baseball. I have never met another person with cf before. My doctors are very strict about keeping cf patients on opposite sides of the room...it's really annoying!
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