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Things to avoid are swimming pools-where the water is circulated between a number of pools, Out of date onions, Compost heaps, Ponds, Any warm moist enviromment, other people with CF, any black mould, Saunas and Steam rooms.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
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
Help support the forums so we can support you: https://www.healingwell.com/donate
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)
Posted 8/17/2008 5:08 PM (GMT -7)
Hi! I am a 21 year old female with CF, and I'm colonized with both MRSA and pseudomonas (I wish I could spell it lol). I am currently on three different inhaled nebs: Albuterol, pulmozyme, and TOBI (on 28 days, off 28 days). I also get very scared because, while my PFT's are high, I'm still not as healthy as I used to be when I was little.
You do more physical exercise than I do and I'm sure that it's better for you to be doing that much. What do you do for physical activity, if you don't mind me asking. I try to bike, run, or walk whenever I can.
I also have cystic fibrosis related diabetes, which makes gaining weight so hard. I understand that feeling of despair and depression because you're expected to just take it in strides. I also do not know anyone else with CF which makes it difficult.
I also play Sims2 to help me relax, and I also play black and white 2. I agree with Gem, it's fun to pretend to rule the world
. Are there any questions that I can answer??? Let me know
My thoughts and prayers are with you. Good luck with everything
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