Reassurance needed!

Hi,

I am basically posting to ask for some reassurance! I have been feeling very chesty since mid October, was told I had a chest infection in November, which was the worst I've ever felt - I was wheezy and coughing all the time. I was on pred and antibiotics plus Fostair and my reliever - am off the pred and antibiotics now but still feeling very tight chested and the cough has not gone at all. It gets really bad at night so I'm exhausted all during the day, and my peak flow is down from 500 to 440 - not a massive drop I know, but usually it isn't affected at all, even when I'm feeling chesty. I went to the doctors again yesterday and he is referring me to a specialist because he basically said there is nothing more he could do for me. I have never seen a specialist before and really don't know what to expect. I also know that appointment won't be for a few weeks so I am not going to get any better any time soon, which is very frustrating as I'm struggling to get my college work done (I'm at music college playing oboe, a wind instrument - really helpful!)

I just was wondering what the next stage would likely be - I know there are other medicines out there that could work but I just don't really know what to expect from the specialist - do any of you have experience of this? I am also frustrated that it is taking so long to get better - my asthma issues have never lasted this long before!

Thanks for reading, any advice is very welcome!

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Hi music geek!

The first thing a respiratory cons is likely to want to do is lots of blood tests and lung function tests. Most of this is to rule stuff out that could be exacerbating your asthma such as new allergies.

They will ask lots of questions about whats been happening in your life and if anything has changed.

They also like to look at your peak flow diary so if you have one, take it with you, if you don't, start one!

I will also say don't go expecting a magic cure there and then. I know its frustrating as you want things sorted so you can get back to how life was before the flare up but I will say the cons has to do some digging first before he can taylor your treatment plan to your specific situation.

There are general thingd they can try but normally after information gathering has been done.

Good luck!

X

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i just saw a new consultant and he said things might take a long time to fix but i'm on a whole load of meds already so it will be harder to give me new things to try! sigh!

they'll probably do a lot of talking on your first visit. they asked me every single detail about my breathing issues from who diagnosed me, what treatments i was given and when, what kind of symptoms made them increase/decrease meds. they also asked questions about what my attacks are like, so when i tend to get them, nighttime symptoms, triggers, and what it feels like at various points during the attack. i was spared some of the questions as when i was in hospital last time i managed to scare his registrar so she talked about the fact that yes i do have widespread wheezing across my chest, severe SOB etc. but they might ask you more questions like that.

tests-wise, for me they listened to my chest (clear as a bell as soon as a stethoscope is near them obvs), did pulse oximetry to see my oxygen levels and heart rate (the nurse looked confused when i refused to believe my HR was 65, until she took it mannually at the correct value of 126!! - i dont think my pulse has ever been as low as 65), they did peak flows, and the nitric oxide test (where you breathe in and then steadily out into a machine, it basically looks for inflammation in your lungs) and a LOAD of blood tests (looking for allergic responsiveness and things like aspergillus which i believe is a fungus which can mimic the symptoms of asthma and that kind of stuff). they will also check your peak flow and ask you whether you are actually taking your meds (if you think either of these could be an issue get it sorted before you see the consultant as otherwise he might just send you away and tell you to take all your meds properly and see if that helps - makes their life much easier!)

the tests they ordered were full pulmonary function test with reversibility (so spirometry type things, lots of different ways which they mess with your lungs to see how well theyre working), mannitol challenge (they give you a 'trigger' and see what happens to your airways) and chest CT (to rule out things like bronchiostasis and aspergillus again, and i think it shows any scarring and stuff in your lungs too)

if youve not been to hospital with your asthma before they might want to do a chest xray (which will show infection and stuff) but i get these most of the times when im in A&E so he didnt bother.

all this testing will take a while, i think they aim to be done within 6 weeks, but as much as i appreciate the NHS speediness is not its strong point! and i suspect the specialist wont want to change any of your treatments until he's seen all the results. thats certainly what mine said. i assume when your GP handed you on this means you are on the max dose of fostair, if not i'd go back and ask to be increased (yes - this is something my old GP managed to get wrong!) and if you are really struggling and its affecting your studies it might be sensible to have another short course of pred, to see if you can get your lungs working a little better to see you through till you are actually being treated instead of tested.

my fingers are crossed that the consultant will find out a simple cause for your lungs suddenly deciding to be difficult, but there are so many differnet treatments out there, it might just take a little while to decide which ones will make your lungs happy! let us know how it goes x

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Thank you so much for your replies

Angelica - I started a peak flow diary a couple of days ago. I was told a few years ago not to use peak flow as a measure because I'm a woodwind player so it always tends to stay high - it was my old asthma nurse that told me that though and it has dropped now, so I'm guessing I should be taking it seriously! Thanks for the info, I guess I can't expect a magic cure but you're right, it is frustrating to suddenly be struggling with things you took for granted before!

Soph - thank you for the detail in your reply, it really helps me to know what to expect! This is my first year away from home with new doctors and a new hospital so it's all a little daunting. I have been to A&E up here four times so far (all in November!) and had a chest x-ray done the last time which was clear, my GP did a blood test as well which didn't show any problems. I haven't had any other tests done before though so I guess that's the next stage. As far as I know I'm on the highest dose of Fostair, but I used to be on Symbicort on a higher dose, though that gave me side effects so GP took me off that - which is a shame because that was when my chest felt at it's best! I think if I'm still bad in a week or so I may go back and see if there's anything else that could help me for now - I hate struggling to leave my room, I'm climbing the walls in here!

Thank you for the support, I really appreciate it x

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Sorry to hear you're having trouble. I went to college as a cello student, so can relate to the music :), and how hard it can be when you aren't feeling well yet have to play your instrument for a number of classes :(.

I have trouble taking symbicourt too, so I'm on a higher dose of steroid inhaler instead, so maybe your doctor could try something like that if your frostair isn't strong enough. Also, I know whenever I've lived in a dorm the allergens in the building are much worse than when I lived at home with my parents, or are now that I live in my own apartment (with hard wood floors). So maybe that's part of the problem? There's not a whole lot you can do about that of course, but as someone who sometimes thinks I'm going crazy, I'm sure there's a good reason why your asthma isn't being cooperative!

Bee