Message Boards for the CF Trust

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softie

Posts: 1,070
From: Croydon, Surrey
Registered: 07-Feb-2004

Re: Tools, aids and apparatus
Posted: 14-May-2004 19:17

Reply

Hi Chlo, welcome to the forum. Looks like you've tried just about everything! Have you tried to dnase? If so, has had done you any good?

Take care, hope you stay well.

Richard.

Lisa90210

Posts: 43
From: Surrey
Registered: 02-May-2004

Re: Tools, aids and apparatus
Posted: 14-May-2004 23:27

Reply

Hi Bridge,

Yes it is called the Vest and your right everyone in America seems to use it as they get it on their insurance. I was surfing the old internet and came across it and emailed america about it. They told me there was a rep in the UK in Cheshire called RAHN. I arranged with him to have a trial. Thing is they are so expensive. He wanted £13,000 for a new one. He said I could lease a machine for £350 a month!! It seemed like a right rip off to me. A friend of my mums cousin is in the medical profession in the states and says there is new airway clearance system coming out and is suppose to be much better. It will cost around £6,000 so a bit of a difference. Ill try and find out some more and let you know.

Lisa

chlo

Posts: 29
From: petersfield
Registered: 14-May-2004

Re: Tools, aids and apparatus
Posted: 15-May-2004 01:00

Reply

hi softie,
thanks for message x
Were you referring to DNase nebulizer to thin down secreations? If you were then yeah - i used it in the trials for my hospital when it first was being tested where i am! That must be what, 9 or 10 years ago now, when i was 7 or 8 yrs old or maybe a little younger! I cant remember (my hospital always seemed to use me as one of their guine pigs!) And i have used it ever since then. Id say its one of the most if not the most important thing i my treatment. I even have it twice a day when im not well and really feel it if i ever miss it. So yeah DNase has been a huge help to me, although i do know some people who just cant get on with it. I had a friend who couldnt use it coz it just used to make him feel like he was drowning. So it really didnt suit him. With me I find i just cant clear anything without it coz its all to thick and sticky (sorry for being graphic!). I also add saline to my ventlin nebs coz i find that helps in a similar way to.

best wishes to you
hope you're well

chloe xxxx

Louise

Posts: 63
From: France
Registered: 26-Feb-2004

Re: Tools, aids and apparatus
Posted: 15-May-2004 09:58

Reply

ignore me - just editing a message posted on wrong topic! will go away now!

Message was edited by: Louise

softie

Posts: 1,070
From: Croydon, Surrey
Registered: 07-Feb-2004

Re: Tools, aids and apparatus
Posted: 15-May-2004 11:55

Reply

Yep, that's the one. I started it at about the same time during one of the trials, and I found it was absolutely superb. My vital capacity went up to 110% of predicted!

I'm very well at the moment, thanks. Best wishes to you, take care.

Richard.

pipparoo

Posts: 62
From: London! Holloway. what a nice place!
Registered: 10-Feb-2004

Re: Tools, aids and apparatus
Posted: 15-May-2004 16:45

Reply

i always did physio with my mum, but when she started getting busy, i started doing my pep mask. its much better because yuo can sit up and read etc. i havent done physio for ages (apart from when im in hospital!)
pip

softie

Posts: 1,070
From: Croydon, Surrey
Registered: 07-Feb-2004

Re: Tools, aids and apparatus
Posted: 15-May-2004 22:20

Reply

Oh dear, silly girl! I always do my physiotherapy!