Warning rant ahead!
Like lots of you here I have been struggling this summer (actually progressively getting worse all year) and I am now in a horrible situation
I have been admitted apx every 2 weeks, thankfully only requiring 1 or 2 night stays, largely because I have learnt to go early, and am struggling In between times. I have been waiting to start Xolair since January which is a crazy time to wait especially given that I have had it before, admittedly in a different trust, but the nurse specialist that does the injections is off sick and apparently there is no one else who can start the injections! I live I'm SW London and my hospital trust is huge so I really can't fathom that one out.
I have been on 40mg of pred for the past 6 weeks and have been told to continue till I get the injections. I am just out of hospital again where they did briefly mention home nebs but surprise surprise the nurse who deals with that is also off sick. As I was being discharged the consultant shouted that he would see me on Thursday so I naively asked why and his reply was ""let's be honest ur not likely to stay out of here long, I can hear ur voice going already"" I was little gobsmaked and also perplexed at the thought of being discharged 6hours after my last neb when my heart rate was creeping up again, my sats were slightly down and my voice was going! I'm not complaining I would much rather be at home but I do kind of feel that they are not taking me seriously. If I had been intubated or landed in ITU (not something I ever want to achieve!) I wonder would they be pushing a bit more to get the xolair started?!
Ugghhh I'm just soo fed up of struggling.
Sorry for the moan chaps