When I first started reading the forum (years ago) I always said I'd never moan bout my own situation as people on here make me look well.
I'm a brittle asthmatic who was not diagnosed as asthmatic til I was 30 yrs old. Almost immediately my asthma never wanted to be controlled ( a bit like me really). I started off on basic meds but had to keep stepping up as nothing worked- I was soon on regular pred (which I hate). Piled on 5 stone (thanks to pred) and the asthma got worse. About 4 years ago I was ventilated for the first time- something I'd always dreaded- being a nurse made it worse (no knowledge is better than a little knowledge). My consultant felt it was hormone related and after many tests we agreed a hysterectomy would help- I was 37 when I had that done. It did help for a while but then came back with a vengence. Eventually 2 years ago I was accepted for funding for xolair- my last resort- and it worked!! My asthma was 80% improved- reduced pred to 5-10mg (was on 40mg maintance dose) and could get on with my life although a little limited.
I'd not been admitted for a year but a month ago I was admitted and ventilated for the 15th time- this time though they couldn't get me off the vent and I was stuck on it for two weeks (which may not be long compaired to some but one day on the vent is one day too long). It was like a living horror story- because they were trying to get me off it I had minimal sedation so was awale for most of the time. I've just got home- my arms and legs are weak my lungs are just managing on 40mg pred and I feel rubbish (exhaused). But because I'm home people thinnk I'm ok again and so can carry on like normal. Even my GP thinks I'm fit to start back at work full time on monday---------------------
Appologies for the moan= as I'm not a moaner but I'm so tired, worried and fed up-------