I hardly ever post on here but I do read here from time to time and have always had great experiences and help in the past.
I am a brittle asthmatic - diagnosed feb 2000 am under the brompton under prof durham and debbie and under my local hospital - broomfield where i'm currently in reidence now.
I have been up and down over the last 10 years of being in itu to being able to leave a relitively normal life - so as you can see i vary so much!
Since having my son in may 2008 at 32 weeks after a very rough pregnancy spending the last 5 weeks of it in ITU I haven't been able to get back to what I feel is full health and i'm struggling mentally and physically with this.
My current medication is
uniphylin 400mg BD
Alendronic Acid 70mg
Atrovent nebs 500mcg QDS
Ventolin Nebs - as and when - pretty much 2 hourly at the moment
am currently on 40% o2 (10lpm) and am saturating between 85-96%)
Am also currently on IV aminophylinne so not on the uniphyline.
Im currently really struggling I have 2 young children at home but am not physically well enough to get myself washed and dressed let alone look after them - take this morning for example I got out of bed on o2 with the help of a nurse and had a wash with a bowl and changed my pjs all with help of nurse which ended in my sats plumeting and 4 nebs to get over it.
Im also really down as I just can't handle this anymore - no one seems to have any answers my consultant is currently off as it the other consultant I trust, so no one seams to know what to do. I miss my children so much i'm exhausted as Im nebbing pretty much 2 hourly so not sleeping
I know some of you out there are drs and also there are a few brittles - what would you do? What other options do I have - they have mentioned sub - cut which I have used in the past. Are there any other options or do I just have to sit and bare it and get on with it. Im sorry to post such a down post but i really dont know how much more of this i can handle.
THanks in advance for any help