Feeling very frustrated!!!

Hi all!

Just wondered if anyone could give me some idea of what happens when you're referred to the respiratory team?

I've been asthmatic all my life (now 37) and until a couple of years ago it was well controlled with seretide 250.

Lots of chest infections and visits to A&E and resus later I've now been told I'm a brittle asthmatic

Here is the frustrating bit. With each bad attack my recovery gets longer and longer and I'm now into week 5 of recovery and still struggling (which sucks as I work and have a 5 year old).

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Cont.....

What can I expect? How can they help? What do they do at a respiratory climic?

Sorry for the long ramble.......

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Hi Angelica,

That must be very frustrating - at least you've been referred though and they're not playing around! Are you seeing an asthma specialist? general resp? Specialist centre?

I've not been to a specialist place (yet) but I have now been to three different general resp. specialists so I know what generally goes on there! There have been a couple of other posts about it with details which I will find and bump up for you. Where will you be going btw? Someone on here may have been there already so could possibly be more specific.

You should expect to spend several hours there (not all of that is actually spent doing anything productive, but let's just say if you have a 10.30 appt meeting someone for lunch at 1 is not usually realistic!

Generally you see a nurse first - they might just weigh and measure you or might do a couple of other things (this time it was also some basic spirometry, pulse and sats). I'd imagine they'll want to send you off for a chest X-ray, lung function (though you may have to make a separate appt for this depending on the hospital) and blood tests, possibly also an ECG. At some point during or after all this lot you'll get into see either the consultant or their registrar. They'll ask about a million questions - it can help if you write down a summary, I did this last time and think they found it really helpful; they also like it if you've done a PF/symptoms chart.

They'll then probably do some sort of examination - usually limited to listening to your chest, and heart if they're pushing the boat out but I did once have a registrar who really went to town on this bit, it depends on the doctor really.

Once they've finished with that and looked at the results of anything they've already done, they'll usually tell you what they're thinking and what (other) tests they want you to have and when - you might end up trekking round the hospital for a while. Usually they'll book you in for another appt fairly soonish.

I hope this helps? Feel free to PM me, I am not brittle but they took their time diagnosing me so I've been back and forth with lots of tests!

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Thanks sooooooo much for that, its exactly the sort of info I was looking for!

I am going to Hythe (Kent) respiratory clinic which has specialist respiratory nurse, physio etc.

I had no idea I might be in there that long, was thinking it would be a half hour chat.....ooops!

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Nope sorry, this is the NHS lol - you'd be lucky! The first time I went the person booking the appt tried to give me a vague idea by saying I'd have tests and a 'chat with the doctor' - well that was not really my idea of a chat... Glad this was helpful though - I tried to look it up online before I went but find what they tell you isn't what they do so it's better to hear from someone who's been.

It could be different but for all mine so far I've been there for at least a couple of hours - first was the longest as I saw a student before the registrar and that registrar was the thorough one. I'd take a book or something though, definitely. Don't know if you might also see the physio? I've been referred to physio a few times but always had to wait a while so it would be very handy if you got to see them right away!