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New! (16 yr. old)

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Cystic Fibrosis
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icsgeo64
New Member
Joined : Feb 2007
Posts : 6
Posted 2/28/2007 7:22 PM (GMT -8)
Hi!

My name is Laura and I am 16..almost 17 and I actually found out that I had CF just 2 years ago....they always told me that I had asthma!....Just looking for someone to talk to who is my age, please reply!

Laura

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NeefaFeefa
Regular Member
Joined : Aug 2006
Posts : 75
Posted 3/1/2007 7:11 PM (GMT -8)
Hey Laura! My name is Emily, and I just turned 17 in January. I've known about my cf since I was abbout 2, and that's the only time I've ever been hospitalized for it (there's been some close calls though). I would love to chat sometime! Do you have msn? or AIM?
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icsgeo64
New Member
Joined : Feb 2007
Posts : 6
Posted 3/1/2007 7:28 PM (GMT -8)
Yeah, I would love to chat sometime....I dont have AIM but I have myspace, facebook, and yahoo.......let me know if you have any too!

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NeefaFeefa
Regular Member
Joined : Aug 2006
Posts : 75
Posted 3/1/2007 8:03 PM (GMT -8)
Well I don't have any of the stuff you mentioned, what about MSN?
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icsgeo64
New Member
Joined : Feb 2007
Posts : 6
Posted 3/2/2007 2:35 PM (GMT -8)
I don't have that either...:(

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NeefaFeefa
Regular Member
Joined : Aug 2006
Posts : 75
Posted 3/4/2007 10:21 PM (GMT -8)
Darnness
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mom2jjk
Regular Member
Joined : Nov 2006
Posts : 25
Posted 3/11/2007 4:42 PM (GMT -8)
I am not your age (sorry!) but I wanted to ask you a couple questions if you don't mind. I am a mother of an 18 month old who gets quite ill with asthma. Pretty much everytime she has a flare-up she ends up on antibiotics before she gets better. She has had all sorts of tests to try to diagnose her and as of right now they are saying she has severe asthma. The lung Dr wants to test her for CF. My baby is growing well and doesn't seem to have any nutrition issues. Her main problem is the recurring lung infections. So I was wondering what your symptoms have been? Do you gain weight ok? 

mom2jjk

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NeefaFeefa
Regular Member
Joined : Aug 2006
Posts : 75
Posted 3/11/2007 7:37 PM (GMT -8)
Most people with CF have a lot of trouble gaining wait and are usually underweight (especially when they get sick). Personally, I have never had trouble with my weight, my problems lie more in my lungs and digestive system. CF is different for every person.  A ot of people do battle lung infections, and some symptoms are severe asthma like occurences. Asthma is part of my CF. When I overtax myself I cough, get tight chested and am out of sorts for a little while. I don't get infections pretty much at all, the only one I've ever had is when they found at about my CF at age 2. But I'm constantly battling colds and whatever sickness is going around because of my lower immune system. But like I said, it's different for everyone
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imondeck
Regular Member
Joined : Apr 2006
Posts : 105
Posted 3/13/2007 6:14 PM (GMT -8)

Hello everyone and welcome to HW!

Mom2jjk, Emily is right in saying that everyone with CF can present symptoms differently.  Your doctor will know what to test for and "put all the pieces" together to come to a diagnosis (or not).

Good Luck and keep us posted on your child's results.

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pahiatua
Regular Member
Joined : Feb 2007
Posts : 43
Posted 3/17/2007 12:44 AM (GMT -8)
Well i was diagnosed with CF a few weeks after birth. I've had a pretty normal childhood but I seem to be pretty good at putting weight on. I'm 14 at the moment, I have MSN and know someone else from this forum who has it as well!.
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MomtoAllie
New Member
Joined : May 2007
Posts : 2
Posted 5/2/2007 11:05 AM (GMT -8)
Hi!  My daughter was diagnosed 2-1/2 years ago at the age of 15 years old.  She's now almost 18 years old.  We seem to think she's in total denial and refuses to do her treatments on a weekly basis.  I'm so frustrated!  How do I get her to realize that if she stays healthy now by doing her treatments, she'll prolong her life?   She seems as if she's in total denial.  She's never been hospitalized and feels well most of the time.  Can you give me any advice?  Should I just back off and let her fend for herself?  That is something that is very hard to do given that we love her so much and we want what's best for her.  Her 19 year old sister was tested positive as a carrier.

She is now questioning the existence of God and why this has happened to her.  Can you relate?

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Gemsi
Veteran Member
Joined : Feb 2007
Posts : 1050
Posted 5/2/2007 12:19 PM (GMT -8)
Hi Mum to Allie!

I can definately relate with that. I definately agree with the whole god thing. If God was all kind and good, then how could he let this happen? Why would he create something so terrible. I personally believe there's a god, but I think he's a lot crueller than people make out. I also don't believe in the bible. But that's a different story altogether. I used to, but growing up, and trying to work around my CF. It doesn't seem as if it ever could be real.

Cf is very hard to deal with at times, you just want to go out with your mates to a smokey pub, drink your self silly, then just have a hangover the other day. And not feel like your world is crashing down because it feels as if someone is stabbing holes in your lungs, so you can't gather the air.

Does she have a CF team? If so what are they like. I find between them they work as a very good councillor for me, and can tell you the pro's and con's about going out, taking treament. They will have seen a lot of epople with CF through the years and will have seen many different coping stratagies, and stratagies so that you don't feel as isolated from your friends.

I guess these sort of things will be going through your daughters head. It must be pretty hard aswell, as I'm guessing she had a pretty normal childhood? I mean, obviously she will have shown some symptoms, or she wouldn't have been tested for the gene to begin with. It must be so hard going from not knowing what's wrong, to suddenly finding out at 15 that you have a terminal illness.

If she's read up about it, she'll be scared, and she will need some reassurance that not all cases end the same way. Some people don't start to experiance problems till there 40, some have them as soon as there born. It's kind of like a gene lottery I guess.

Back off, but don't, be on the lookout for her, but don't nag her about stuff. I find even now at 21, I'm very defiante against anyone telling me what to do. I know I obviously don't know your daughter, and don't know how her mind see's things. Maybe she needs a different stratagy to me, but this is how things have always been for me. I go along fiine, until someone tries to remind be about treatment. I know what I'm doing and how often I should be taking it. I also know the treatment does help me feel better. A reminder triggers in my head as people getting on at me.

If you want to email me or MSN me regarding any of what I've said, then fire away. My email address is gemsflowitt@hotmail.com

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