Lack of action plan

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.

Take care

Rabbit

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Lack of action plan...

Sorry to hear of your problems, I can understand what you are going through but unfortunately I don't know any way of helping. My coughing regularly cracks one or more of my ribs, my former clinic never seemed to know what to do, but luckily I was transferred to another medical practice where there are two superb asthma experts - and this only happened because I kept getting under the skin of the old practice. My main problem now is the DWP who refuse to accept that Occupational Asthma exists (even though the HSE have issued papers on the subject), or that asthma symptoms can fall outside their narrow guidelines, and although I haven't been able to work now for five years I don't receive any Benefits or DLA - I'm officially classed as a malingerer.

Try not to let it all get you down: in my case Asthma UK (Scotland) gave me a way to fight back, and although I can't do anything at the moment about the DWP I have certainly been really annoying their Lords and Masters over the last few years by sitting on parliamentary committees and appearing on TV. Mind you, with my luck our committees will probably find ways to the cure for everything other than asthma.

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Hey Rabbit, once when i was feeling everything was on top of me I rang up GP surgery and asked to see a practice nurse. I had a good long chat with her about it all and this really helped me. You could try it, she may know what to suggest.

My asthma like yours is totally strange! My peak flow never shows my how my asthma really is. Some days i feel cross with my medical team coz they say oh your peak flow is good so just carry on, even when i am really struggling. I personally do not think peak fllows are very good because they do not record how asthma is for all people.

See if you can see a practice nurse they may be able to help or at least be a pair of trained listening ears. Also you could see if there is a respiratory nurse in your area who would be willing to take you on her books. Without mine i would be in trouble.

Plumie

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Hi Rabbit,

Appart from the advice already given there is not a lot one can do, a chart to the practice nurse can really help, or ask for a longer appointment with your GP, give you more time to go through things.

PF are not the be all and end all, lack of wheeze is another that they don't understand, but we all don't have that as a symptom.

I see you phoned the asthma UK team, I Know I've said it before, they don't answer emails, but why not try filling in the form with all the meds and details, they may be able to help a bit more that way.

Take care, hope thing get sorted soon.

Chris

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Hi Rabbit,

With regards A&E and being believed, would it be possible to get something in writing from your GP? Maybe make a double appointment just to talk through your concerns with this? This is a problem I experienced, and my GP wrote a letter that I could take to the hospital with me if I needed to go not via the GPs (she also writes a letter if she sends me). It clearly states past history/how asthma affects me, medications, allergies, other important issues.

I seem to be on 'the system' (whatever that means) at the hospital now though and haven't had problems for a while, fingers crossed.