jessicapocalypse

I'm a CFer and I totally understand OP on the whole wanting to be treated normally thing. I've always kept my CF life quite seperate from the rest of my life and have never really been known by my friends to be the "ill" one. That said, had I ended up in hospital again, I personally would be glad of the company and would be happy to see friends and loved one, especially if the stay is more than a few days. Being in hospital is a reality many CFers face, but it's easier to get through it with friends and family than without. It's just my personal opinion, but I think that you can treat somebody "normally" even though they're in hospital. I would talk to your daughter's friend's parents first though, wouldn't want to step on any toes and you can always ask what would be the best approach for the little lady in question.

I can't really speak for anyone else, but whilst I was growing up with CF, it was all I knew and therefore it normal and perfectly fine. I've been lucky in the sense that the rest of my organs are fine, and because for long periods of time I wasn't particularly "ill" (in the sense that I couldn't do normal everyday things), I lived a pretty normal life and all the hospital visits and medicines and physio etc were just an added thing that we just had to "do". My family was caring and positive and did everything they could for me, but I see now that this also caused me to "forget" that I'm ill. As a child, I was never really told much of the "darker" side of CF (you know, deteriorating health, mortality etc.), and it really hit me hard one day in my teens when I was casually browsing the internet and read some articles about CF. I realised my family had completely shielded me from the reality of CF and having to learn it all by myself from the internet made me feel very alone, scared and a little betrayed. I'm sorry I don't really have any advice for you, just an experience you might be able to pick up a few pointers from. Good luck to you and you niece!

Which drugs do you IV? Every three months I do a course of tobramycin and ceftazidim intravenously. Is the IV treatment the reason you're in hospital? When I lived in the UK I had to go in for the treatment, but here in Norway they offered me a portacath-thingamebob, which makes life alot easier, seeing as I can do my treatment at home.