Hi there Jessie,
I'm a year younger than you, at 22, female, and was diagnosed at 2 years old.
Most people are under the belief that just because you've been having treatment all your life, and know what too expect, that it can't be as scarey. These people are wrong, completely and utterly. There is no unscarey part about living with CF.
I am also considered well, because my lung function is still really high. However I am colonized with one infection (meaning it is impossible to get rid of) and have another a lot, plus there is a mould that grows everywhere, that I'm allergic to. Doctors seem to think that because my lung function is high, then I can deal with everything they throw at me. That I don't need explanations or support with meds and why they suddenly want me too take 3,000 more tablets.
Prevention means include doubling physio when an infection is present, jumping on the infection right away- before it can do any damage, or set up a tent so it can stick around. Watch for viruses hitting your chest. IF you have a sniffley nose for a couple of days-then the next day you have a cough more impressive then a 80 year old smokers-get to your doc right away.
Things to avoid are swimming pools-where the water is circulated between a number of pools, Out of date onions, Compost heaps, Ponds, Any warm moist enviromment, other people with CF, any black mould, Saunas and Steam rooms. Of course avoiding these complately is never absolutely possible, but they are the main places for bacteria that like too live in CF lungs.
I'm sorry if I've not helped. It's taken me a couple of days thinking of a reply for you, as I didn't want you getting any more scared.
I can tell you though you are not alone in feeling scared. Every couple of months for me, it feels like the worlds going to end. When they've used me as a pin cushion and give me yet more tablets that don't agree with me!
OH, and for spirit lifting-computer games-Sims 2 especially, it's fun ruling the world! Painting, voluntary work in maybe a charity shop or something, cooking, spending time with friends.
Keep writing and let me know how you're getting on!
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus
Post Edited (Darkies Gem) : 7/16/2008 5:07:50 AM (GMT-6)