Message Boards for the CF Trust

Replies: 27 Pages: 2 [ Previous \| 1 2 ]

Darling

Posts: 731
From: Here
Registered: 06-Feb-2004

Re: On Ivs over xmas...
Posted: 14-Dec-2006 23:11

Reply

Having been on here for so long, yes I can

Kim (summerdays)

Posts: 301
From: south wales
Registered: 15-Nov-2006

Re: On Ivs over xmas...
Posted: 15-Dec-2006 09:28

Reply

Hi sandy chin up babe,like you said you can have a huge party on new year, im on iv drugs every xmas, sure its the stress of xmas that brings it on.

ive been ok for weeks but im sure im getting a cold, so i may be joining you on iv drugs, i'll keep you informed if you like eh ? have a good one at least your on the road to recovery x

kim x

saz

Posts: 36
From: Leeds
Registered: 09-Feb-2004

Re: On Ivs over xmas...
Posted: 15-Dec-2006 10:27

Reply

Think I might trump the lot of you...on IVs 16 months and counting, plus on transplant list a year. But things aren't bad at all really!!!

Darling

Posts: 731
From: Here
Registered: 06-Feb-2004

Re: On Ivs over xmas...
Posted: 15-Dec-2006 10:35

Reply

*bows down with extreme reverence*

ClaireW

Posts: 3
Registered: 15-Dec-2006

Re: On Ivs over xmas...
Posted: 15-Dec-2006 10:49

Reply

Hi Darling

the doctors think I may have the same infection as you although not confirmed yet, can I just ask does that always mean so many months of IVS, I currently dont have a port so just want to be prepared of what this might mean for me, I have lost 20% lung function is this usually what happens, sorry for all the questions I have just finished 2 weeks of IVS and am a little worried as I dont have them to often and usually keep really well, my doctor didnt go into to much detail!

Cx

Darling

Posts: 731
From: Here
Registered: 06-Feb-2004

Re: On Ivs over xmas...
Posted: 15-Dec-2006 12:20

Reply

Hi Claire

It doesn't always mean IVs.

I started on Ethambutol, Rifampicin and Azithromycin orals, but they didn't work and indstead made me rather unwell.

I've had the bug a long while but was not symptomatic until April when things went rather pear shaped. Lung function didn't drop much but I had major flu type symptoms for 4 months before the Bristol team could start the IV option. I also had to have a CT scan to make sure we were doing the right thing.

There are various types of atypical mycobacterium, each being treated a little differently.

It generally does mean long term treatment though to be sure of keeping it at bay.

ClaireW

Posts: 3
Registered: 15-Dec-2006

Re: On Ivs over xmas...
Posted: 15-Dec-2006 13:29

Reply

Thank you for your reply. Just worried about it as I haven't heard of it before. Will wait and see what the results are.

thanks again

Cxx

sandylizz

Posts: 97
From: Shrewsbury
Registered: 10-Nov-2006

Re: On Ivs over xmas...
Posted: 15-Dec-2006 22:29

Reply

Im used to having Ivs for important dates as for a year now Ive had 2 weeks with them then two weeks off, then needed them again, so each month at clinic I have Ivs... but at least I get 2 weeks off them... and at least the venflon normally lasts the distance...

xx Sandy xx

Mc Clarey

Posts: 3
From: Peterborough/ Canterbury
Registered: 13-Dec-2006

Re: On Ivs over xmas...
Posted: 15-Dec-2006 22:38

Reply

Im really sorry to hear your on ivs over christmas, im sure it will be a real pain.. but at least you have new years free!!
I dont think anyone at all should feel guilty about moaning though, a 2 week course of ivs or however long they turn out to be are annoying and time consuming etc. Whilst some people would give anyting for a 2week course, i'd rather give anything not to have any at all!
Hope you start to feel better soon Sandy

Emmie

Posts: 35
Registered: 06-Nov-2006

Re: On Ivs over xmas...
Posted: 15-Dec-2006 22:41

Reply

Have to say I totally agree on that! Sorry to hear you're on IV's over Xmas Sandylizz. I'm heading that way myself so may end up keeping you company! As Mc Clarey says, one day of IV's is more than anyone should have over Xmas! Hope you have a happy one anyway xxxx

Sweetpea

Posts: 83
From: Scotland
Registered: 09-Nov-2006

Re: On Ivs over xmas...
Posted: 15-Dec-2006 22:57

Reply

Well I will keep you all company too! I started on IV's on Monday and yesterday/today have been the worst days, so hopefully the worst is over and will be able to enjoy Christmas. Not got long to get better and worrying! But I done my shopping early and that's out the way.

I was on IV's the last time for 6 weeks, which is my record! It took a lot out of me I have to say. So well done you DARLING.

Hope you all have a great Christmas and New Year, IVs or not!

Sweetpea

sandylizz

Posts: 97
From: Shrewsbury
Registered: 10-Nov-2006

Re: On Ivs over xmas...
Posted: 15-Dec-2006 23:53

Reply

I hope everyone enjoys xmas and those on ivs dont let it get in the way or get them down! and those who may go onto ivs before hope they kick in so you feel better before xmas...

xx Sandy xx

MarkR

Posts: 5
From: Lebanon, Oregon USA
Registered: 16-Dec-2006

Re: On Ivs over xmas...
Posted: 16-Dec-2006 00:09

Reply

Thats great. Ive been inhouse for the holidays before. No fun at all