Cystic fibrosis and pseudomonas aeruginosa - anyone?

My 2 year old godson has CF. He had a sputum sample taken, which has come back positive for pseudomonas aeruginosa. This basically means that whenever he has any sort of infection that requires antibiotics, he'll need them intravenously. This also decreases his (already to short) life expectancy. Is there anybody who is more knowledgeable and can expand on this further? His mum and Dad are gutted beyond belief (obviously) I just wish I knew more about it. i find it hard; I'm a nurse and they often ask me questions that I just do not know how to answer.

I'm not really sure what I'm asking to be honest, I just feel helpless.

Life really sucks sometimes.

I'm sorry to hear that  your family are affected by CF. There is some useful information here

http://www.cftrust.org.uk/aboutcf/livingwithcf/crossinfection/

I'm sure you have heard of these people already but they do some very good work.

P. aeruginosa is a real bugger for CF kids. Its one of those bugs that is practically everywhere (including in water) and doesn't cause a problem. For some reason it loves CF kids lungs, probably because of the thick mucus giving it a happy home.

I'm so sorry about it affecting your godson, hopefully they'll get on top of it.

Ruth - I don't know if this will be of any help but i did a 10 week placement on a Cf ward as a student nurse. A lot of the patients were over 40 years old and had enjoyed a very good quality of life  - what with the treatments that were available.

A great deal of them had a portocath inserted which meant that they could do IVs at home instead of coming into hospital. I did a 5,000 word essay on CF (my feedback said I should have it published) and it's impacts  - if you'd like me to email it to you, just let me know.

Hi Kath, that would be fab if you wouldn't mind?

Thanks for the replies all, it's much appreciated. I really hope they can get on top of it!

RuthG:

Hi Kath, that would be fab if you wouldn't mind?

 

Thanks for the replies all, it's much appreciated. I really hope they can get on top of it!

Hi Ruth, the wonders of hitched aren't letting me PM you are start a conversation so feel free to contact me at