I'm feeling rather lost. I was transfered to Wythenshaw in December 2008 as my asthma just wasn't being controlled and after nearly 4 years of trying my local hospital didn't know what else to try. I have allergies but no one individual one is high enough to qualify for Xolair.
Wythenshawe did various tests & ~ was diagnosed with a breathing pattern issue. I've never wheezed just tend to cough a lot, they think I've learnt to surpress the cough reflex as my body has learnt that coughing hurts! This means peak flows and lung function tests are no good in indicating when I'm starting to get into difficulty. I've only a change in symptoms to go on and if I go to A&E I feel they don't believe how bad I am and that I need help. I'm on daily pred and nebs and frequently have to use back to back nebs to when I start to get problems. I know I should really go to A&E but often can't face trying to explain that I have atypical symptoms but can go down hill in a sort space of time. My sats will suddenly drop and I eventually start to wheeze. I have nothing from Wythenshawe which I can show to A&E and then just to add tot he fun the local team don't want to help because I'm under a specialist centre. I've been told they are following current guidelines but these only seem to 'fit' people whose chests behave typically.
Is anyone else in this position? I feel quiet worried as I don't feel in control and I don't want to be accused of wasting people's time. I've currently got a chest infection which is bad because I didn't know and didn't get antibiotics till much later than I should have done. The other problem is actually getting in touch with Wythenshawe for advice. I'm being tried on several new treatments (to me) and my GP doesn't seem to be kept informed of what treatment I'm on. I've been put on kenalog but don't know why or what to do when my chest flares up. I did try and speak to one of the asthma UK nurses but they can't comment as they don't know all my treatment .
Has anyone any suggestions of firstly how I can get treated more appropriately? what kenalog is and why would I be put on it instead of pred, and how I can get some sort of written instructions to explain my situation and how to treat it. I'm sure the stress of not knowing isn't helping but I'm at a lose of what else to do. I have an appointment in 4 weeks and go with a list of questions and normally get so nervous I don't ask them or forget to find out what to do in certain situations. I've just managed to go back to work and can't afford to lose this position due to asthma. Its bad enough I know I feel horrible when I start reducing after the rescue course of steroids I was eventually told to take in addition to the kenalog I'd been given to get me through this infection.
Apologies for the long waffle, I'm looking for answers and how to try and mange my condition betterespecially now I'm taking it more seriously.
Hope someone can help.