Hi Toni, Welcome too Healingwell!
This must be hard for you, and I can understand why. With my CF, I was diagnosed at 2, and have known nothing different, it's easy to deal with when you know it's there and what you are dealing with. My only experiance of being newly diagnosed with soething, is with my muscle problems. 2 years after them spotting a problem they still have no clue what they are dealing with. And it's hard beause everyone's advice for it contradicts the other.
Everyone has to die sometime. CF can cause preature death without proper treatment, but the good news is, life expectancy is gettng better everyday. When I was born, expectancy was 5, when I hit 5 it was 12, when I got to 12, they said 31. Now I'm 21 and doctors tell me, 60. So, I don't worry about
it anymore. Advances in treatment and knowledge of the condition has helped me beat expectancies down with a stick. If it weren't for my muscles, I'd still be working, like a lot of my other CF friends.
Hope an answer comes back soon, so you can start making things better, and can get back too feeling normal. (normallity does come back, just with a little added extras.)
Feel free to ask any questions
Co-moderator in the: Cystic Fibrosis Forums
Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Saline neb/PEP system, Piriton, Mirtazapine, Diazepam, slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Posted 11/1/2007 8:16 PM (GMT -7)
hi toni, my name is penny, and our youngest child who is 6yrs old now also has cf. i know that this is very hard for you. i just wanted to say that what works for us is to take it one day. i know that is easyer said then done ,but if you don't it will make you crazy.are you from houston texas? i know some one named toni that lives there. just wanted to know if you were the same girl. my e-mail is email@example.com
Currently it is Monday, December 10, 2018 2:35 PM (GMT -7)
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