First meeting with asthma nurse next week. What will happen when I go?

ok, my first post. I should tell you the story so far...

For as long as I can remember, I've had breathing problems.Most of the time it was due to hayfever. From April to August every year I would be up 5 nights a week coughing, feel breathless, have a tight chest and wheeze whenever I did exercise. I always just accepted that this is what happened. I got a prescription for a salbutamol inhaler when I was about 9 and just kept using the inhalers as and when I needed then (usually every day). The prescription ran out ages ago, but my mum decided to keep putting it in anyway to get it repeated, and it was every time without fail. Last year, I decided that when the inhaler I had ran out, I would go back. Every year the symptoms get worse and it got to the point where I could only dance for 5 minutes before I was unable to breathe. At other times I can last for an hour.

I had a chest infection when I was a few hours old, so I took it as given that every winter I would get around 10-12 colds and that I would constantly have a cough. Last year, in November, it was worse than ever. I was literally unable to breathe, using my inhaler 4 times a week and awake all night coughing. I saw a nurse practitioner but also had tonsillitis and laryngitis at the time so I couldn't explain myself. She told me I didn't have a chest infection and that I should just ride it out. By Februaru it hadn't gone so I made an appointment with my GP. This was 5 weeks ago. He asked me a few questions, listened to my chest and then told me to use a salbutamol inhaler morning and night, and whenever I needed it, to keep an symptom diary and to see an asthma nurse in 6 weeks.

I'm going next week. My GP said she would do breathing tests, but didn't say what they are, or what they involve. My breathing had improved and, though I still get symptoms, I'm back up to 10 minutes of dancing a night and am generally more awake. Hayfever is my main problem at the moment and this year my tablets aren't working after a month of taking them, so I'm going to ask about something stronger.

Basically, I'd just like to know what's going to happen when I see the nurse. I'm 18 and have never needed to see a doctor before in my life. My parents don't seem to care and I don't know anyone with asthma so I'm a bit scared. Can anyone help?

Well done if you got through that without falling asleep. Sorry it's so long, I just though it might help if I wrote the full story out rather than just bits of it.

Thank you for any advice. I really appreciate it. :)

16 Replies

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  • Hi Rachel and welcome!

    Wow...it sounds like you might have had asthma for quite a while - really your GP when you were younger ought to have noticed the rate you were going through inhalers and made you come for a review. Very sloppy not to, especially for a child!

    It sounds like you need to be on something more than just the blue reliever; depending on what your diary and the breathing tests show I'm guessing the asthma nurse will want you to start using a steroid preventer, which should calm things down.

    I can't remember what the asthma nurse appts were like when I was younger and recently I've only been once when I just confused the nurse and she had to ring the GP for advice (that's just me lol), but I'd imagine she'll look at your diary, ask you how things have been and check your technique with the inhaler, plus do the breathing tests.

    I've not had breathing tests at the GP's surgery (at the hospital) but imagine they'll be pretty much the same, measuring peak flow (max speed at which you can blow out), how much air you can blow out in total (forced vital capacity) and how much of that you blow out in the first second (FEV1) -the numbers and their relationship to each other tells them what's going on. Basically you blow into some tubes - the nurse will be telling you what to do and probably sound like someone who's staked all their savings on a horse (they like to yell 'come on come on keep blowing keep blowing, get it all out...yes!' lol). This link may help. en.wikipedia.org/wiki/Spiro... They might also prescribe a peak flow meter for you to have at home so you can take your own readings and keep a diary (actually surprised the GP before didn't give you one).

    Hope this helps - I'm sure others will be able to add to this! And feel free to ask questions on here if you're not sure about something - I've learned a lot.

  • Thanks for your reply, it really helped. I had never really thought about my breathing problems as problems. I had just assumed that they were normal for me. I was suprised that I was never asked to go back to see someone about using inhalers. I was never taught how to use one by a nurse, I just read the instructions in the pack! I guess because I never complained the docs just assumed everthing was ok. Part of the reason I never went back was because my mum wouldn't let me go alone and there was no way she was coming. When my mum goes there is no point in me being there- when I had my braces fitted the orthodontist asked me if there were any wire sticking in me and my mum, who was sat across the room, said no! My parents unfortunatly don't trust me. They don't care about the breathing issues they just want to make sure I'm not going for contraception!

    Anyway, back on subject, don't steroids make you put on weight? I look fat if my BMI goes about 19.5 (I'm 5 foot 2 and have a petite frame) and it's already 19.4. I know that shouldn't matter as breathing is more important but... I'm sure I'll manage to confuse the nurse too lol, I confuse my dentist all the time! I'll make sure that my diary is legible then if she's going to read it! Sometimes even I can't read what I've written lol!

    Those tests don't sound too bad :). I think we did a peak flow one at school. I got 280 whatever that means! Though, in all honesty we didn't take it that seriously, and someone had dropped the metre just before I used it, so I'm not sure if it was fully functioning! I did spend ages coughing afterwards and my teacher tried to get me to go to the nurse. I don't want that to happen again.

    This website is amazing, I was so relieved when I came across it! The only thing I have to worry about now is if I actually have asthma, or if it's someone else. I'm only assuming that I do since I have the inhaler, the symptoms and was told to see the asthma nurse. It's a shame my GP couldn't see me. He's a rediculously good looking american!

    Thanks again :)

  • ooh I want your GP lol! Actually mine is very good but have heard others on here also have ridiculously good-looking drs and I'm jealous lol.

    Steroids only make you put on weight if you have to take oral steroids at a high dose for a long time, which basically happens only if you're already on loads of other things and they don't work - so far you don't seem to have been put on anything to control things so you are some way away from that and hopefully never will be there. The ones you're likely to be given are inhaled steroids, which means they're targeted to reach just the lungs and not really affect anything else. If you were a child who was on high dose inhaled steroids for a long time you might have growth issues, but at 18 they're unlikely to do much beyond the good effects (though they can cause oral thrush so if you get one make sure you rinse your mouth out after using it).

    re PF - what's 'normal' depends on how tall you are, whether you're male or female and how old you are. You can try working it out somewhere like here mdcalc.com/estimatedexpecte... this is just based on averages across populations. If you've ever done a lot of athletics or (like me) a lot of singing/playing a wind or brass instrument, the value will probably be higher, plus some people just have it naturally higher or lower than predicted. My predicted is 470 and my actual best is 700 - it doesn't make life easier actually as I always seem like I must have horse lungs that have nothing wrong with them because I'm above predicted, even though I'm below my personal best!

    Hope appt goes well, keep asking questions if you want! At least now you're 18 you don't have to worry about your mum too much re appointments. It does sound like asthma is a strong possibility at least and if they say no and you keep struggling just keep pestering them.

  • Oh right, I get it. I should probably stop believing all the steroids horrer stories in the news then! Any chance I could use the oral thrush as an excuse to stop wearing my retainer? lol, my dentist would kill me! I would however, like to grow a bit, just to average height maybe!

    So even if your value is better than what you're predicted you can still have asthma? Sorry if that's a stupid question, I'm just a bit confused, everything I've read says it would be below if you have asthma. But I suppose lifestyle does have a massive impact. Dancing is the only exercise I do regularly but I do it as long as I can breathe for. I also run up the hill every day from my school to the bus park, which is a killer during hayfever time. My bus driver knows to wait for me at least. And I have a friend who works out so he carries me occassionally! I need the 50 minute ride to recover!

    The doctors is about half a mile away and my school bus stops outside forttunately so my mum doesn't really know about appointments! We had one of those massive 'I'm 18, I'm an adult, treat me like one' arguments a few months back :)

    Thank you, I just don't want to seem like an idiot and have the asthma nurse look at me and say what are you doing here, you're waisting my time! I tend to have the approach that stuff'll go away on its own when it comes to my health though.

    Thanks for helping me! Sorry for all the questions it's just nice to have someone to talk to! :)

  • No worries, it's natural to have loads of questions. I still do even though I had asthma when I was younger (don't remember thinking about it much though as it was mild, mainly a slight pain and sometimes an excuse to get out of PE. I shouldn't admit to that lol...)

    It's not a stupid question at all - I've heard so many different opinions on it! It's definitely possible to have PF that is above your predicted and still be asthmatic, because like I said your predicted might be lower than your actual best. Quite a few docs will say if you have asthma your PF must drop and will use it as an ironclad guide, but I'm not so sure. My asthma is hopelessly confusing to everyone so not an accurate guide, but have been told as my PFs are generally within 80% it must be mild asthma.

    However, I don't feel like my PF is a very accurate guide, and I know some people on here with severe asthma find theirs doesn't drop until they're well into an attack and already needing help. Some things I've seen suggest going on symptoms rather than just PF, so if you feel pants and you can't talk properly you should get help even if your PF isn't too bad. Plus one of the asthma nurses on the adviceline here (they are very helpful if you ever feel you need more expert advice and will take as long as you want) told me that peak flow only tells you what's going on in the large airways, and you can have issues with the smaller airways but still have good peak flow. With peak flow recordings taken over weeks etc they look for variability - a jagged line on the chart - and also the morning dip ie lower PF in morning and evening.

    After a bit of time on here you'll find out that there's a lot of variety in asthma. The good drs and nurses know this and won't expect you to always be 'textbook'. The not so good ones will get hung up on things like a wheeze, and say if you don't wheeze you don't have asthma (this isn't true at all; luckily my drs do know this). You are definitely not wasting the asthma nurse's time though - it does sound like you need to at least have her check what's going on as you're obviously struggling.

    Sorry to hear about the difficulties with your mum though - will you be going off to uni or something soon, if you're 18? Hopefully might be easier if you're not living at home and can take more control, especially if anything in your home environment like dust/pets are causing problems.

  • I never thought about using it as an excuse to get out of PE :(, then again I had a range of others to choose from! I've never used a peak flow thing and haven't been in the house alone to use my mums yet. I have found it, I just don't want an audience! I'll use it later though since my parents and sister are going to the cinema! I'll post the value.

    I hope the nurse I see doesn't rely on wheezing! I have wheezed twice in the last six weeks and not for months before that so it's a bit hit and miss. I saw her in November when this whole thing started and she told me to 'ride it out'. That being said, she was friendly and I don't think there was suspicion of asthma then.

    Yeah, I'm hopefully off to Leeds uni in September to do I degree in medical sciences (so some asthma research modules!) and then hopefully I'm going to do graduate-entry medicine :). I did apply for medicine this time round but being tired all the time made me mess up the interviews as I couldn't concentrate and hayfever last summer meant that I messed up some exams :/. Still, in 7 years I will hopefully be a doctor! It's not that bad with my mum, just the lack of freedom and trust! My school bus was late a few weeks ago so I got home 10 mins later than normal and she shouted at me for half an hour about why hadn't I called! So yeah, can't wait to leave home and get to uni!

  • Just tried my mums peak flow meter. I had a couple of attempts and the highest I could get was 440 then I had to stop since I felt dizzy. I used the table that cam with the peak flow meter to work out the normal reading. I'm technically 5 foot 2 and a half. The reading for 5 foot 2 is 458 and for 5 foot 3 is 461. I have used my inhaler today, but about an hour ago. However, my neighbour is cutting his lawn on one side of the house and the field on the other is full of that horrible yellow stuff so hayfever may be acting up a bit without me realising. Also, the machine is very old and it says valid for 3 years on the back!

  • Does your mum have asthma then, if she has a PF meter? That ups the chances of your having it if she does, or anyone else in your family (as you might already know). What sort of meter is it? Does it look like this?

    allsportmedical.co.uk/Produ... (remove spaces when you paste, this forum randomly adds them).

    Never heard of them not lasting more than 3 years, but you never know! Maybe they've switched the way things are measured - I would ask the nurse about getting a newer one on prescription (as you're 18 and still at school it should be free). Your PF will be higher if you took reliever an hour before - if you possibly can try to wait till you've not had any for at least 4 hours, though I know this isn't always possible - I find it pretty hard to do my evening PF without any reliever.

    Think not being trusted can be quite hard so can see you must be looking forward to uni and getting a bit more independence. Sorry to hear about things messing with the interviews (I know asthma makes my brain mush at times!) It may help you in the long run to do the longer route though; where I was at uni (I wasn't doing medicine or anything related) everyone had to do a 3-yr medical sciences degree for undergrad and only did the clinical stuff once they had that - 6 yrs in total I think and it is a different route but I'd imagine you get more in-depth knowledge that way - and you'll be good at understanding asthmatics when you do qualify, from your own experience! I've found even when some drs really know their stuff, they can sometimes be a bit dismissive of symptoms as they don't live with them - you'll know what it's like, and probably will help even with treating people with things you don't have yourself.

    btw I imagine you have exams coming up - make sure you know what to do if you get problems with asthma etc during these - maybe ask asthma nurse? Don't do what I did and run out of reliever in the middle of an exam...

  • My mum doesn't have asthma. I think it's because she had pneumonia really badly so she was given one to measure her breathing as something went wrong during the surgery. It looks more like this one allergyasthmatech.com/SP/Mi... and it's about 20 years old, unless she's got a newer one after she had pneumonia. I can't see a date on it, it's worn off.

    I'm not sure that I should tell the nurse about this reading. The machine might not be accurate and I don't want to mess up my treatment- I'm fed up of not being able to dance!

    I'll definately ask about getting one though- make the most of free prescriptions before October!

    In some ways it'll be good doing medsci degree. It covers the first years anatomy, we do dissection and the majority of the modules are choice, and I can choose anything from the biological sciences faculty. I'm definately going to do a lot about the lungs now!

    Yep, I have 8 or 9 exams coming up. I hadn't thought about exams with asthma, it's usually the sneezing from hayfever that appears on exam day and I've learnt to deal with that by holding a tissue to my nose for the whole exam! I get weird looks from invigilators, but it works! I'll speak to the exams officer on monday about taking my inhaler into an exam. I'm not sure if its allowed- water bottles can't even have labels on them incase we cheat! I'll speak to the nurse about exams. I think I may have left it to long to get myself stronger hayfever stuff. Still, my exams are 5 weeks away so time to get a bit more control of my chest!

  • Your mum's PF meter won't be the same figures as the doctors are using now - that picture is the same as my PF and mine is about the same age actually. The meter ranges changed in 2004 to bring them in line with European meters. The new meters read a bit lower but you can convert them here tinyurl.com/cyf7h8u

    I personally don't hold much stock with PF readings - i can get good readings even when i feel totally pants, i put it down to a very active lifestyle and years of playing wind instruments.

    Definitely get yourself a new PF meter if you can get it on free prescription - my doctor's wouldn't even give me extra inhalers about 3 weeks ago even though i put a note on my repeat form to say i wanted them before prescriptoin price rises this month *sigh*

  • So using the converter, my value was 387? Are the normal values the same, or have they changed too?

  • I think that calculator link I put further down *should* give you the newer values so should be ok. Or Google 'peak flow calculator' and do a few.

    Degree sounds good - does seem like you'll get more of the theory as well (and imagine you'll get top marks in the modules about the lungs! Nice that there's loads of choice too. If you were American you'd have to do it this way!)

    Re the exams: might not be an issue for you with the asthma but probably best to check beforehand so you're prepared. And definitely check about the inhaler - I would have thought they'd have to let you have it, dangerous not to. I don't know for sure as I didn't have active asthma when I took my A levels or finals so no inhaler needed, but if they're that bothered that you might scribble equations or formulas on the inhaler label they can always check it first!

  • From google, all the peak flow results were pretty similar. If the nurse doesn't do one when I go, I'll ask as she'll be able to get me pretty accurate results I assume. I'll let everyone know if I learn any secrets while I'm at uni! I'll talk to the exams officer and get a note from the nurse to say I need to have the inhaler with me. I suppose I could give it to the invigilators and ask them to bring it me if I need it. And yeah, like you said, they can check it as much as they want before the exam, there's no way I'd cheat!

    I was talking to a friend yesturday who sid that when his mum was diagnosed with cancer she kept a blog about everything that was happening as she went through it. I looked on the internet and couldn't find one so I started my own. I find that writing stuff down helps, and tbh I don't care if no one else reads it- it's helped me!

  • Hey x

    I know how you feel, I ended up on the bench in my football team coz of my horrible breathing problems..

    And that was nothing, compared to what am experiencing now - sometimes not able to hold a pen and draw, a nightmare !!

    About your readings: I don't know how much I can trust them, but am between about 5,6""/5,7"" and NEVER have over 400 ..

    Well anyway, I have my 1st asthma clinic in 3 weeks, hope yours goes well & keep us posted!:)

    xx

    ps. U becoming a doc?? Good thing, we defo need more good ones!

  • Hi :)

    I've never been that bad- have you been officially diagnosed then or just passed across to the asthma nurse like me? As nice as my doc is, I think he was trying to fob me off a bit!

    From reading around on here I think that peak flow is a pretty rubbish indicator by the sounds of it! It just worried me that mine is still too low even with a few puffs of my inhaler straight before.

    I'll make sure I post what happened after I've been. My appointment's next thursday at 4:30. Not sure how long it'll last though but I'll write on here while it's fresh in my mind!

    Hopefully going to be a doc yeah, it's the only job I've ever wanted to do. Asthma stopped me getting into medical school this time round so if anyone comes to me thinking they have asthma I will definately not turn them away! I want to be a GP too so I am probably going to get loads of people coming to me about it in the future!

    Not looking forward to the appointment really, I don't want to be told to leave off dancing for a while. My Latin and Ballroom dancing exams are in May and they only last about 10 minutes. I think I'll refuse if she tells me to leave it!

    Thanks for the reply :)

    Rachel

    x

  • Good news you're thinking of being a GP, we need more who'll listen!

    Just wanted to say re the dancing - sounds like you're pretty serious about it if you're taking exams etc and probably spend a lot of time doing it; I imagine this would definitely push your PF up as dancing seems to be a pretty intense activity - no wonder you have trouble doing it when SOB! Saying this as you should probably mention it to the asthma nurse - don't just say you dance, mention medals/exams so she knows you don't just mean dancing in front of the telly lol.

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