First appointment with consultant tomorrow

Hiya everyone,

I'm posting because I have my first appointment with my consultant tomorrow and I'm experiencing mixed feelings about it!!

Excited, because I am hoping it is the first step to gaining some control of my asthma and getting my life back on track with it!

Nervous/apprehensive, because its a new experience and I don't know what to expect!!

I think the main thing I want to know from the appointment (but don't know if its realistic) is how long they think it will take to get some control without being on crazy high doses of pred ...

I'm amazed its come round so quickly, my gp referred me as an ""urgent"" case only 3 weeks ago!

Cheers for listening to my ramblings!

Laura x

26 Replies

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  • Good luck with the appointment! Hope it goes well.

  • Good luck! Hope you get all you want out of it and more - let us know how it goes.

  • Good luck from Lola

  • Thank you!!

    I have a few questions for them, such as meds changes - any way to get off the pred onto an alternative any time soon? Time span for improvement?

    Is there anything else I should ask?

    Mind in overdrive with it at the min!! I know they are going to do blood tests and I am massively phobic lol!!!

    I am just concerned that this will be passed off as anxiety :-S

    Laura x

  • My first appt with a new cons (it was different with one who had treated me in hosp for 2 weeks as obvs he knew a lot more about what was going on with me) was a bit frustrating tbh. Not because he was dismissive, or anything like that, but just because he had to take the time to work out my lungs and how they worked. He said at the time that he didnt want to give me any timescales, or talk about any possible treatments as he didnt want to make promises/raise expectations if he couldnt stick to it. He spent most of the appt asking me the exact nature of my asthma, what attacks were like, my full asthma history. Asking general questions looking into whether sleep apnea, reflux, VCD etc were likely to be contributing factors, and then he ordered aload of tests. Ive had blood tests (i know they did IgE but no idea what else), chest CT, revirsibility spiro, methacholine challenge (which didnt need to be done as i was so reversible from the spiro), home sleep study, exhaled NO and then later he also did the short synacthin test to see if my adrenal glands were working. There were no medication changes at the first one when he was still in full testing mode, and no serious changes at the second one, the changes at that stage were in order to allow him to do the short synacthin test, plus stopping one i no longer wanted to take. I think it is hard to accept the slow pace that treatment will inevitably take, but it is important they rule things out too. Asthma is pretty hard to properly diagnose and it can be confused with other things, you dont want to be treated for the wrong condition!

    If i were you i would take a list talking about how attacks tend to work for you (slow/sudden, cough/wheeze which first, how SOB how fast etc), a peak flow diary if you have one (or good knowledge about how up and down you are), and list of the sort of things you've been treated with in the past, and how you were first diagnosed etc. I would also explain that you dislike needles and so is it possible for as many as possible to be done in one sitting (i find he did mine in bits and bobs as he knows i dont really care). Might be worth having a think about current meds you are on, which you feel benefit (and in what way), which you feel dont and why.

    Question-wise, i got basically none of my questions answered in the first one (yours may be different - just preparing you for the possiblity):

    timescale, medication options, any likely contributing factors (VCD, anemia, reflux, anxiety), anything like physio which may help in a non-chemical type way, what tests are being done, when you can expect them to be done, when you are seeing him again, and the sorts of things he might say (so high igE, will he suggest Xolair etc), need for an action plan, concerns about pred side effects (are you on bone protection/should you be etc). ANy concerns you have about what you should be doing during attacks, when to seek help etc. I think those are the main ones that were on my mind.

    HTH, im tired so might be a bit of a muddle, let me know if anything is unclear! Goodluck - let us know how it goes :-)

  • Good luck today Laura. I have the same mixed feelings whenever I go to appointments so know how you feel.

    I'll echo what Soph said in terms of what they will ask (mine asked me lots of questions to go quite in depth about what asthma is like and the effects it has on everyday life). I forgot to take my peak flow diary and while she didn't ask for it, it would have illustrated my points well. I had a range of lung function tests (although not reversibility tests) before the appointment and blood test after (mainly IgE including specific IgE to the things I said I was allergic to and a few more common ones but also looking for other things that can cause you to be SOB like low iron). These were the most useful as they indicated that I react to pollen and so they realised that they needed to look at hayfever treatment too (quite basic I know). Although the asthma nurse has always said my symptoms are more anxiety than asthma the consultant didn't mention it at all. The lung function tests were nearly normal and they didn't have the blood results but she said that is expected if you are not experiencing symptoms. She also could tell I was a musician/runner from my varied results depending what they were testing for (I can really control my breathing) so said that 94% predicted could be seen as quite low).

    Again mine didn't want to give a timescale and said that getting the right meds was unlikely to be an overnight success but they consider changing my inhaler/adding something else. They could only do one so went for the change in inhaler. Unfortunately this didn't work and I am back to square one in terms of waiting for next appointment. I realise now that I should have asked her what to do if the inhaler change didn't work as my GP was clueless when I went back a week later!

    You sound like you have thought about it a lot so are well prepared. I hope you get some answers.

  • Thanks soph and kayla :-)

    Will post properly later to update!

    Laura x

  • Hiya

    I had my first appointment with my consultant today, and actually came away feeling listened to and reassured, although also have some mixed feelings!!

    I have been diagnosed with having severe and brittle asthma, he has said that I have aspects of both type 1 and 2 brittle asthma, so cant state whether I am type 1 or 2, told me exactly when I need to seek help and that in not doing this is life threatening given how quickly I deteriorate. I found this quite difficult to hear, but think I am more likely to call 999 now when I am having difficulties.

    I have been given a verbal action plan, which basically consists of when I need to call 999. But he is booking an appointment with his asthma nurse within the next few weeks to come up with a written action plan of how I NEED to be treated in A&E given how ""brittle"" I am. I have another cons apt in the next couple of months too.

    I am not CVA, but also had it explained why I don't often audiably wheeze and has said that my action plan will make this clear for A&E.

    He listened, answered all of my questions (even if he couldn't actually answer them, gave reassurance) and didn't dismiss me. Even with the ""severe, brittle type 1/2"" I feel more settled this eve.

    He has changed my meds too, now on Symbicort SMART, with a maintenance dose of 2x400/12 twice a day with upto 2x2 puffs PRN when having an attack, he wants me on a higher dose of ICS than I was, with the option of increasing if necessary. He has said I can go back to Seretide if I don't get on with it, but would rather me be on the Symbicort so to give it a good go - I have been advised to go upto the double licenced Symbicort daily if required :-/ . Plus the other stuff and tapering towards 20mg pred, where I have to stay. I am also on salbutamol/atrovent PRN, montelukast and citerizine.

    Even with all this, I have been told to expect at least a couple of bad flares per year which land me being admitted - this is a bit worrying!

    I coped well with the blood tests,I have been told that in an emergency I NEED IV HC/magnesium sulphate/aminophylline, which I think I will now cope better with now I've had the blood tests.

    Its a shock to have been diagnosed as being *so* severe!!

    Laura x

  • Glad you came away feeling listened to and reassured at least :)

    Sounds scary to have been diagnosed brittle but at least now you are with the right people to manage it and have / are developing a proper actio plan.

    *hugs*

    Take care x

  • So glad to hear you had a good appointment

  • I'm glad you had a good appointment even though it is scary at least they are being proactive about your treatment which should help you get a bit more control. It is good too that you are getting an action plan (one of my ongoing arguments at the moment) and that they recognise you don't usually wheeze. I ended up at OOH last night (reluctantly as I thought I would just be sent away again) after spending the day enjoying the sun and half term. To my surprise the nurse actually heard me wheeze and then asked why I looked so shocked! They still wouldn't prescribe pred but gave me nebs as an extra boost and told to phone back if it got worse. My docs still seem reluctant to accept this as a flare and said I sounded fine on the phone this morning so wouldn't prescribe pred. I am currently obsessively noting symptoms, meds taken and pf everytime I take my reliever to show them on Monday and will certainly be chasing up that action plan when I next see my consultant!

    Take care

  • My docs still seem reluctant to accept this as a flare and said I sounded fine on the phone this morning so wouldn't prescribe pred.

    Hi KaylaCP,

    I just realised that the 'good practice' for people with asthma that has required oral steroids in the past is that we are supposed to keep a minimum of 48 hours at our normal burst-dosage (usually 40mg/day) at home so that we can start them immediately when we need to, even if it's a weekend.

    Not only do my surgery staff not second guess whether I'm having a flare - the reason I phone them is to let them know that I've started my steroids. They then expedite a script for another X+2 days, so that when I finish the intended course I've still got a spare 48 hour supply for next time.

    I'm actually in a different situation now, being on hydrocortisone 'for good', I get a few months at a time and am in charge of my own 'sick day' dosing, including upping for asthma, and I have injectable for emergencies. But it has been a good 4 or 5 years since I last didn't have a couple of days of pred in the cupboard.

    You could urgently contact your consultant's secretary and see if they'll get you a script so that you have pred for back-up. It has only just occurred to me how far from the good-practice guidelines the way your surgery are behaving is.

    Cx

  • @KaylaCP I cannot fathom a nurse/GP that wouldn't take ""I'm having a flare"" as the beginning and the end of the discussion as to whether you are having one! After all, you are living with your lungs 24/7, whether you have a 5 minute or even 5 hour period in which things are good enough to talk on the phone shouldn't diminish the fact that you are feeling that your symptoms are unusually severe. Do they think we like the side effects of pred? Bonkers.

    @Lollie88 - wow, what a life-changer. It's a bit of a shock when you find out that you've got something so serious. On the one hand it's a huge relief (I found) to know that it isn't all in your head, but on the other hand you'll have the slowly-sinking-in 'life is genuinely the way I think it is, and that's pretty hard and quite dangerous' experience as well.

    We all know that no matter how official your DX, you will occasionally run in to people in charge of your care who think that they know more than the person who wrote your diagnosis letter, or that you aren't having a 'proper' attack right now, but hopefully you'll be in a much better position to easily access the level of help you need to keep you safe.

    So - this reply is a 50/50 ""oh god, I'm sorry* / *congratulations!* - I'm sure you'll have lots of ups and downs as you get your head around it. Have you got support with those?

    Cx

  • I am so pleased you had a good consultant appointment, so sorry that you have been diagnosed as being brittle it must have been a shock for you, at least you have a very proactive plan now.

  • Gosh Kayla that's terrible!! I hate the fact that so many people are dismissed as not having any issues just because for that few minutes your lungs decide to behave themselves! As curiouser said, do they think we like the side effects of pred? I personally hate the stuff, but beginning to realise they aren't going to let me off it any time soon lol! Keep persevering, if necessary go to ooh/a&e and demand it lol it's not worth risking getting really bad! Thanks for sympathising, was feeling overwhelmed when posting last night - but on the bright side, *fingers crossed* I won't have to jump through so many hoops to convince my local a&e that I'm having an attack next time!

    Curiouser - I was genuinely shocked when they came out with the ""brittle"" I thought they'd say severe or something along those lines, so it's taking some processing! Is was a serious oh.my.gosh moment. I was even more surprised by this (don't know why?!) becuse I was having a really good day - pf 90% and above of pb. I am trying to think of it as being helpful to have a formal diagnosis, because as you say I should be able to get the necessary help. Your: 'life is genuinely the way I think it is, and that's pretty hard and quite dangerous' comment has totally summed up the way I feel right now! But I hope I don't run into too many of the ""i know better than your consultant"" people :-/ ... Sorry, I'm waffling again!!

    I have spoken to a couple of friends about this, but not my mum (who I live with even in my mid 20s lol) I don't know if its lack of understanding or that she's just anxious, but she seems to have an issue with the ""asthma dx"" cos I wasn't dx as a kid ... Just another barrier to overcome!

    Just out of interest, how will this effect job apps etc, I am a teacher and beginning to look at moving on from my current school, do I need to disclose the ""brittle asthma"" or can I tell them later? That seems a bit cheeky though.

    Jen G, thanks for the hugs :-) it is a bit scary, esp as felt as though it came out of the blue!!

    Beth, thanks for support :-)

    Asthmagirl, thank you :-) my plan (though its only verbal at the min) consists of call for 999 at this point lol - at least it's very clear!! I am going to have a proper written one though asap though when I have the apt with the asthma nurse in hosp!

    I also want to add just how good my consultant was, was stressing in case he wasn't understanding etc, but he was very approachable - don't think I'll be as nervous before the next appointment!

    Thanks again everyone :-)

    Laura x

  • Laura - wow! That must be a lot to take in, but I think Curiouser's pretty much summed it up with the 50/50. I'm glad you had a good consultant though, as the only thing worse than having severe brittle asthma (I can imagine, not having it myself but having more than enough symptoms for my taste) is having them dismissed/ignored/not getting the help you need - so a really good consultant who listens properly is a great thing and defo good that you don't feel nervous now. I've been burnt enough in the past by consultants who didn't listen and dismissed me to now be horrendously, nail-chewingly nervous before all cons appts (whereas I can quite cheerfully go to the dentist for a major filling without worrying at all!) The nerves are not good and do not help me; in fact they get me into a vicious cycle where I babble, don't get across my points, come out feeling unsatisfied and then feel even more nervous next time (though it doesn't seem to affect my breathing - sod's law says I tend to be better during cons appts)! So I am really glad to hear that your first experience of a cons was so positive even if the diagnosis was a scary one to hear.

    Kayla - :( I really hope you get the pred you need soon. I've often wondered why they are sometimes under the impression that we want it for no reason when it tastes minging and we have to suffer the side-effects! My now former cons was convinced that I was asking for it unnecessarily and would 'never need it' - which would be nice if it does happen, but as he expects me to get flares every winter despite being 'well-controlled', this seems rather contradictorily optimistic...

  • Curiouser - Thank you for the information on 'good practice' this is something that I will definitely bring up with my GP (I did used to have pred at home but a few years ago I was put on maintenance pred and after coming off it they said that I could always get it from the surgery!) My GP is usually really good as I see then for a host of other things too. I also have never had problems getting pred in the past even though my symptoms have been pretty similar. The doctor who is being particularly difficult didn't hesitate to give me morphine a few months ago when all I wanted was Tramadol! The ironic thing is that at the beginning of the month my consultant said that I probably wait too long before seeking help so need to seek help sooner and 'nip it in the bud'!

    Philomena - I'm sure they think I must just feel like taking it. There are a few doctors who are willing to listen to me and not just go on what they see in that 10 minutes (appreciating that it has taken a few puffs of my inhaler to get me to the surgery and my appointments are usually in the afternoon when my asthma is generally better). I think one doctor gave me pred a fortnight ago just to get rid of me (which at 30mg seems quite a low dose as I usually have at least 40). My preferred GP is back from his 3 weeks holiday on Monday and I have the first appointment with him (complete with my symptom notes from the past week when I have been doing very little due to half term, peak flow, action plan from AUK). I don't think he can deal with it all in 10 minutes but I am hoping he can perhaps explain things to the asthma nurse so she can do the action plan. Thank you to everyone for being so understanding!

    Laura - I am guessing being brittle will make a difference but I have recently (last Summer) changed teaching jobs with a severe asthma diagnosis (was on step 5 and had had several flares in the previous year). At a few interviews (including the job I got) I had to fill out a form that stated I had a medical condition (although I was told that I could decline to fill it out and it would not be seen by the panel) and out of choice I explained to them the various conditions that I have been diagnosed with. Some of the application forms also asked for number of periods off work and reasons but I think these were older forms (and I still got some interviews). My old head was asked this on the reference form but said he could not answer due to some act. When I was offered the job subject to CBR and medical clearance, I had to fill out a form and my GP was asked to write a short report (about a paragraph) for which they paid the fee. HR then talked to me over the phone and suggested that I met with the new head to discuss my asthma. This was not as scary as I thought (I had already accepted the job) and was actually really helpful in allowing me to explain my triggers, treatment and things that help me to control my asthma. This has resulted in the school being very understanding and they have put a few measures in place to support me (eg I have a walkie talkie in my classroom which I can use to ask office staff to come into my classroom if I need help, I do indoor rather than outdoor playtime duties as changing temperatures and pollen are my worst triggers and I can arrange to swap with other teachers when I am bad so that they take my PE sessions/modroc etc). At my old school, if possible, I had the classes with statemented children in so there would always be another member of staff with me which made taking inhalers/taking time out so much easier too (it was a large school with lots of additional needs). Clearly, my asthma is not brittle and this may not apply but I hope sharing some experiences will help you in some way. It might also be a good idea to discuss this with your current school too, if you haven't already done so, as it does make a huge difference.

    Take care

  • am with curiouser and philomela with the ""good practice"" being for all asthmatics having a few days of pred at home (enough to get over a bank holiday weekend). I didn't have this, but I've never had an issue getting pred over a weekend - that might be because when I do I crack off spectacularly lol, or all I have to do is phone my gp and say my pf is x or I am having these symptoms my gp will prescribe over the phone. Things are slightly different for me now also, because I am tapering the pred with a view of being on maintenance 20mg for the foreseeable future to try and maintain a degree of control. I would discuss this with your normal gp on mon or even your consultants pa/asthma nurse.

    I am sure no one wants to take pred unnecessarily, it's got to be about the foulest drug there is out there, but if it helps to stop it turning into an emergency, surely they should want to avoid that! Grrr this annoys me!!

    My current school is a bit hit and miss with how they are when my asthma is playing up, which it seems to enjoy doing at the min lol. Sometimes they are great, like when I am there and really shouldn't be I get looked after, but then when I've been told by my gp I am not well enough to go in and been signed off I have got the ""it's only asthma, why you taking time off?"" Comments lol. Though I am not in any particular rush to move on and I am sure the cons would write something for me when I do decide to change schools if necessary.

    Philomela - I think the 50/50 sum up is pretty close to perfect too, scary and daunting as the ""severe brittle"" dx is at least there is something to work with now. I think I am starring to get my head around it now. I just hope I can have a good weekend now, because recently everytime the sun has brought the pollen out recently I've cracked off, even on pred!! Your former cons sounds like a bit of a prat tbh, is that why you don't go to him anymore? What's your current one like? It's an awful feeling being so apprehensive before an appt, and nothing worse than feeling as though you haven't been able to get the answers you need. Re the breathing behaving, I was thinking about this, and perhaps it's a good thing that they see you when you're well, because then they have something to compare it to when you're really bad? Mine saw me when I was really well, so if I see him next time I'm admitted at least he can make an accurate comparison. When do you next see your cons? Good luck with it!!

    Thanks :-) Laura x

  • 'Only' asthma, hmm yes! Funny how I'm sure they wouldn't mind you taking it off for other things which don't kill three people a day... Hope you get a bit further with them next time you need time off - your cons would probably provide something for that if necessary.

    Philomela - I think the 50/50 sum up is pretty close to perfect too, scary and daunting as the ""severe brittle"" dx is at least there is something to work with now. I think I am starring to get my head around it now. I just hope I can have a good weekend now, because recently everytime the sun has brought the pollen out recently I've cracked off, even on pred!! Your former cons sounds like a bit of a prat tbh, is that why you don't go to him anymore? What's your current one like? It's an awful feeling being so apprehensive before an appt, and nothing worse than feeling as though you haven't been able to get the answers you need. Re the breathing behaving, I was thinking about this, and perhaps it's a good thing that they see you when you're well, because then they have something to compare it to when you're really bad? Mine saw me when I was really well, so if I see him next time I'm admitted at least he can make an accurate comparison. When do you next see your cons? Good luck with it!!

    Yep I can see how it's good just to have an explanation. While not nearly as serious I was v glad to finally just get a diagnosis of asthma as it seemed much easier to have a label for it and an explanation for me as well (though I had been thinking that was what it was all along as I had it when I was younger and it felt similar but worse, and was triggered by most of the same things).

    hehe former cons is technically 'current' as I'm waiting to be referred back to one I saw before who I found much better, but the NHS reforms make this a very slow process (wrongly, according to what the Choice Framework says). My history with consultants is...complicated, which I HATE as I'm aware that it reflects (unfairly) on me and makes me look like a doctor-shopper, whereas actually I would much rather have stuck with one. I saw one a few years ago to establish a diagnosis as GP wasn't sure - he ruled out lots of things which was good but didn't read my notes or listen to my history and was very hung up on PF and normal spiro (I couldn't of course have just been having a good day...). He eventually discharged me but as I wasn't that bad then I didn't care too much and just thought 'oh well, if I'm breathing badly I'll just do the exercises and that will sort it'. DIdn't work, got worse, moved house so was referred to a different cons. She also basically decided it was in my head and down to anxiety (despite the LF guy, an OOH dr and my GP thinking there was a definite physical problem there and me actually being not at all anxious, though I had reason to be with that attitude) and completely ignored the fact that I basically couldn't do very much then without getting really SOB and tired (even a short walk down the road was a big effort). GP got fed up with me being told it was in my head, tried some medication which worked, then referred me again when he couldn't control it. Much better this time - got the cons I now want to go back to, not necessarily 'sympathetic' always but he really knows asthma and always listened and explained why he was thinking a certain thing; also didn't treat me as stupid.

    Had been referred earlier to specialist asthma place which is where I've been till now - they are meant to be good and I know are for some, and again I had some tests and some really, really good physio which helped with additional breathing pattern issues on top of the asthma. They made me pick them or the 'good' guy (fair enough, was getting contradictory messages, picked them because of the physio). But - yes, the cons can be a bit of a prat, though he is mostly a nice guy and he picked up my Vit D deficiency, and would ring me at home to sort things. And I agree, it's good for them to see you when you're well too - I really kicked myself for not doing PF/symptom chart when well as he had nothing to compare it against and just assumed I was stuck at that level instead of up and down.

    On the other hand, I've never actually got anywhere seeing him, other than the Vit D thing. He has seen me worse and better but doesn't seem to compare them - so when I got an FEV1 of 3.7 that was fine, but an FEV1 of 2.7 (not the lowest but when you compare it to my PB as measured there is not what it should be) that was 'no airway obstruction at all' and put down to technique. He's also very confusing and doesn't listen properly a lot of the time, and he's now said he can't help me/just told me to do 'more physio' when the physio herself said she doesn't think this is getting any further (not sure he listened to her either judging from various things she said). So asked GP to be referred back to previous cons.

    Anyway....sorry for that MASSIVE ramble! Bet you wish you hadn't asked now...and apologies to anyone who's read all this before and is fed up with me. But that's basically why I hate seeing consultants. I'd much rather not see one again, but while my GP is excellent, he's not sure what's going on exactly. I basically would just like a plan so I know what to do (like now, when I'm not 'optimal' but don't yet feel bad enough for pred - but should I be trying to nip it in the bud? Don't know, but want to avoid bad (for me) flares which make me miss work/sleep badly - got an interview next week!)

    OK will shut up now. I really hope you can enjoy your weekend without your lungs complaining!

  • Don't worry about ""rambling"" I do it all the time lol and enjoy reading what you post! Always very interesting and informative, and its good to hear what other people's experiences are :-)

    Ahh, I see why that is very frustrating and confusing. I think they need to know what is good for you purely for comparison when you are bad! How often do you to to see your cons? Hope your referral comes through quickly, even I it's just knowing that you have that additional port of call when you know you're not at your best etc.

    You sound quite like me, I like things to be in black and white of what to do and when, otherwise it just feels too subjective. It amazes me reading this forum just how few people seem to have an action plan, this was something my cons seemed particularly hot on, he gave a very strict verbal plan the other day and he's wanting me to see his specialise nurse ASAP to come up with a formal written one, but then he was concerned at how not seriously I've been treated in a&e until I've become really bad. I also *think* he understands why this adds to my reluctance to call for help until its becoming dodgy and wants to obviously avoid the big dramatic do's lol.

    I agree that it's good to have a formal diagnosis (even if I'm still processing it!) because it gives you something to work with - again I love black and white lol. It stops that doubt in your mind that you're being a hypercondriac. It must have been difficult when you knew what it was, but all these medical people were being unhelpful. I think they do get too hung up on LF and spiro etc, though suppose they have to cover themselves. I'm glad that I seem to have a good cons :-)

    You'd think the specialist hosp would have been more helpful! I'm in a different situation though, and think I'm being looked after by the right people.

    Work will be interesting next week with the new diagnosis, though I don't know what level of understanding there will be with it, but it might make them more understanding when I need time off. Though I do tend to go in when I really shouldn't and then get a telling off by my TA. When I have a difficult time my gp always recommends that he signs me off, he's really good too, just struggles to know what to do with me most of the time and I only ever see him for asthma!

    As for you not feeling too good, would it be worth ""nipping it in the bud"" before it gets too bad? This is the advice I've been given. It's such a hard judgement to make though. I went out this morning and am reacting to the pollen, so staying in this afternoon, will try and avoid what's happened he last few nice weekends!

    I've rambled too hehe

    Good luck with your interview :-) Laura x

  • Thanks! Lungs better not interfere with that, it's for a PhD I really, really want.

    I've been seeing my cons about every 4 months, but they also, to give them credit, have mostly been good at fitting me in when I contact the specialist nurse and say I have a problem and what do they advise? This is a great idea in theory and another reason why I chose the specialist place over my other cons (thought more support in between appts). but practically speaking it's not been that helpful as the nurse is rather textbook-focused (odd IMO for a difficult asthma clinic where most people by definition are not textbook, whatever their severity), and the cons generally has just got me in, got me to do spiro etc and then told me that I'm fine, well-controlled and don't need pred - it has tended to be at the 'coming out of flare' stage but I know now, in hindsight, that I was worse last time than I realised, just better than the really bad stage. (Another example of why it's good for them to see you well, but then I thought he had!) So really made me feel 'what was the point of you insisting I come in if you are just going to dismiss what I say?' But - agree with different situations and people; partly a matter of fit as well. I know of others, with much more severe asthma than me, who have also not got on with this place, but also know of many who have found them fantastic.

    tbh my GP is great, does not have hang-ups about pred when it's needed (he used to but that was because he thought it didn't work for me; he's ok with it now he knows it does), and should be fine to deal with the immediate flare-up problem; like yours though he's not sure what to do with me longer-term about making these less likely and giving me a plan.

    Still not sure about what to do - I think you are right about nipping it in the bud, and intellectually speaking it's sensible, but it just doesn't feel bad enough for me to pester my GP yet again (I've had to see him about a shoulder injury and scan referral for that as well so while he doesn't seem to mind, I feel like I am pestering him far too much).

    I have to say, while I don't at all envy your severe/brittle asthma, I'm massively envious of your cons hehe! He sounds awesome, though while I would love a cons like that if I have to have one, I'm very happy that you've managed to find him first time. I wouldn't want anyone else to have to deal with all the aggro/miscommunication etc. I don't want to over-dramatise - there are far worse things - but it doesn't help to have the additional layer of stuff to deal with and feeling like you have to defend yourself, like you say you've had with A&E (somewhere I will not go even when guidellines suggest I should, because I am convinced I will be dismissed - so far I've got away with it). Even with severe asthma I think things will be easier for you having a cons like that backing you, and it should definitely help with management and avoiding A&E. And you won't develop too many odd complexes - ironic that the 'it's all in your head and down to anxiety' attitude actually just gives me minor anxiety issues (not breathing-affecting...) about doctors/asking for medical help where I didn't really use to have any.

  • Hiya, the ""is it, isn't it serious enough yet?"" question is a tough one, but with PhD interview I'd advise to go get sorted and give yourself the best possible chance!! What are you hoping to do? I'd love to do one in SEN at some point :-)

    The fact you can get cons advice/fitted in between apts is good, but its not so good you don't come away listened to. From the sounds of it I'm going to be seeing a fair bit of mine :-/ I am happy that I seem to have a ""good"" one first time round, and tbh as concerning as the ""severe brittle"" diagnosis is, at least he hasn't faffed around with it! You should move closer to my *local* hospital.

    Am I remembering right that you're on the symbicort smart? I've been put onto that (2x2 400/12 per day + upto 4 extra, so a total of 3200/96 if necessary) as well as the salbutamol and atrovent MDIs (plus montelukast, tapering towards 20mg maintenance pred :-(, citerizine and alendronic acid) he cons wants me to use the symbicort if necessary before the others so that the extra steroid component also starts to build up. But when I saw the gp yday (my normal one is on hol) they didn't want me to use the symbicort unless salbutamol wasn't working as its a lot of steroids and that if I am needing that much then helps needed, though that contradicts what my cons has said. I had to explain to her what the brittle asthma meant and even then she didn't seem convinced lol. So, I do what my cons says?! Lol. The reason I ask is because it leads into me next question lol.

    I started off a bit earlier (I'm ok now!), waited for a while, tho did use the salbutamol (duhh no clever) and knew when my finger nails started to change colour that I needed to do something, so used the symbicort (thankfully I am ok now! Damn pollen!), but then started to feel sicky, do you ever find this? Or could it just be coincidence? Obviously it makes me shaky etc, but so does salbutamol! This brittle business is frustrating to manage given how highly medicated I am, I *should* have more control, but at least I now know why I'm not, lol.

    Oh and the a&e, it's frustrating when ill to have to try and explain what's going off, but generally my experiences have been positive and at least if you get there within what the auk guidelines (I am terrible for not doing this and refuse to call for an ambulance, though now been told I cannot be as stubborn :-( lol) say, then you are more likely just to be nabbed and given pred and monitored til you're more stable, and they are *mostly* good. And at the end of the day you know your condition better than they do, if they're dismissive then that's their problem, at least you're in the right place if things start to go wrong! Although I am hoping the cons helps me to have less emergency visits!

    Take care, Laura x

  • Thanks! Good to know A&E isn't that bad. I just feel like I'd be overdoing it but actually I have exceeded the AUK guidelines for going quite a few times now but didn't want to go. Usually I call 111 and they send me to OOH who are a bit useless on the whole... some exceptions but it's mainly like a rather futile GP appt with someone who expects me to justify my diagnosis. If it gets to the multiple puffs again I might just go to A&E if they don't mind people who aren't a 'major' asthma emergency.

    I can't say I've ever felt sick with Symbicort - v shaky and a massively pounding heart, yes (I tend to notice the side effects more when I have lungs acting up - probs all the salbutamol but it's worse after the Symbicort. So can't help, sorry- hope it was a one-off. I'm on it but not on SMART - 400/12 2x3 puffs a day (so 2400 mcg total). Cons said it was too much and I should reduce because I didn't need all that, but when I tried I definitely noticed the difference between 2 and 3 so my GP said I should go back up.

    Defo not trying to second-guess your cons but if you need the extra steroid a lot but are getting side effects from the LABA, perhaps you could ask him about having the steroid component prescribed as a separate inhaler - or does he specifically want to in/clude the LABA part too? Like I said don't want to second-guess or anything as I'm not a dr - also it sounds like you are getting the care everyone should (but doesn't always). Our of interest where roughly is your local? I promise not to kidnap your cons hehe. Hope your usual GP is a bit more helpful - if there's doubt I'd definitely go with the cons as he clearly knows what he's doing and has a specific plan in mind for you. Crossing fingers you can avoid A&E most of the time.

    PhD would be in cognitive neuroscience (doing part-time masters in this atm), and specifically on motor skill-learning and how that works in the brain, particularly with ref to elderly drivers - there would be a practical element too which I like.

  • Thanks :-) I live in the middle of the derbyshire dales.

    I am hoping he sicky feeling is just a coincidence. I still had the shakes lol. My cons wants me on the smart regime, because of the laba as a ""quick relief"", but thinks that the extra steroid will help cumulatively too. I'm on a preventer dosage of 1600mcg, obviously with the flexibility of doubling it. He isn't keen on me going back to the seretide due to him feeling I need a higher dose of the ICS and he didn't seem too keen on the salmaterol component.

    I am unsure as to whether to try and book an apt with my regular gp next week, but will probably wait and see what happens over the next few days, and doing what the cons says :-) I am sure he is sick of the sight of me, although I would love to know what is in the letter cons writes to my surgery - will I get a copy?

    I think most of us are bad for not seeking help tbh, I have point blank refused to call 999, insisting instead of 111/OOH even when pf has been 30% which then normally means I get sent to a&e anyway lol. Though I think with the diagnosis I have now I'll be more likely to call 999 if I can't get control at home.

    I think the thing to remember is that while it might not be a major asthma emergency at the time, there is always the chance it could turn into one pretty quickly, I think that's why auk guidelines say what they do, because if you get to the point where the 10xsalbutamol is not helping then its a bit dodgy. I am sure a&e would rather neb you and send you on your way instead of waiting til you need resus and at he rest. Though I say, I'm a nightmare for not heeding my own advice!

    Your PhD sounds interesting :-) love neuroscience!! Good luck!!

  • Philomena - good luck with PhD - definitely don't let anything asthma related stop you : even if from time to time breathing is so much of a distraction, you have to fit things in and around breathing problems. We're breathing for a reason : our hopes, dreams, and passion are a large part of that reason. (Note to self: reread and apply to self)

    KaylaCP: want to echo what others have said about recording good days/time periods: it is important for docs to know what your healthy energy level, symptom level, PF is, and not just assume you are chronically in the dumps and that there is nothing that can fix that - no one gives medicine for a problem that can't be fixed.

    I know it made a big difference with my GP when I made a ""well"" appointment one day so that he could see me when I was doing well. Until then he understood intellectually I was up and down, but didn't really get it on a more intuitive level. I also made an appointment to see him right after a few days where I returned to something close to my historic personal best both in terms of activity level and PF. Even though he didn't see me well (by the time the appointment rolled around I was beginning a minor exacerbation), I got the impression that seeing close in time to when I was well also made it more real to him. His response to my report was ""now we've proved that you can get this well"".

    A similar process is beginning with my pulmonologist. In a recent conversation about whether to continue a prednisone taper, I told my pulmonologist that I was averaging 75% of personal best. His first response was ""that's pretty good"". I got a little upset at that and told him ""That might be good if I had COPD and I was always that bad, but when I left the hospital three weeks ago I was at 100% so 75% is not good at all"". My pulmonologist is not an asthma specialist - his research interests tend to lung cancer and sarcidosis and he runs the hospital COPD clinic. So from his perspective 75% probably IS stellar. He wasn't being dismissive, just not thinking about what reversibility really means.

    Action plans: I think having a written action plan is great, but I've had trouble getting one from my GP even though I know he believes in the idea. My action plan boils down to ""call if things get worse"" to which I've added from time to time ""make an appointment when things are good so he knows what good is"". Personally, I think this is very labor intensive for him - there are times he hears from me two or more times a week. But I think it helps him know he is doing the right thing. Early on I didn't call and just managed things myself, but that ended up with me going to urgent care after hours and left him cleaning up the mess after the horse broke out of the barn: not really fair to him. This way, even if I do end up needing after hours emergency help, he's had a chance to help me avoid that if possible.

    I think it is a difficult balance when asthma is uncontrolled. Written plans with instructions for self-management are good because they help us feel a sense of control - which is really important if asthma is uncontrolled, but they also reduce the doctor's ability to monitor the situation which makes a doctor uncomfortable.

  • Philomena - good luck with PhD - definitely don't let anything asthma related stop you : even if from time to time breathing is so much of a distraction, you have to fit things in and around breathing problems. We're breathing for a reason : our hopes, dreams, and passion are a large part of that reason. (Note to self: reread and apply to self)

    Thanks Beth! And thanks Laura also for the good luck. Hoping to do this is part of my motivation for wanting a more coherent plan etc - I don't want to let flares get out of control and end up missing work again if I get this PhD. Or anyway, but particularly for work reasons, since I seriously dislike having to tell people at work if I am really struggling. (Ditto my family, and at the moment I work with my mother...).

    Laura - I have mostly had copies of cons letters so you should get one yes though it seems to vary.

    I think most of us are bad for not seeking help tbh, I have point blank refused to call 999, insisting instead of 111/OOH even when pf has been 30% which then normally means I get sent to a&e anyway lol. Though I think with the diagnosis I have now I'll be more likely to call 999 if I can't get control at home.

    I think the thing to remember is that while it might not be a major asthma emergency at the time, there is always the chance it could turn into one pretty quickly, I think that's why auk guidelines say what they do, because if you get to the point where the 10xsalbutamol is not helping then its a bit dodgy. I am sure a&e would rather neb you and send you on your way instead of waiting til you need resus and at he rest. Though I say, I'm a nightmare for not heeding my own advice!

    hehe me too, if I were someone else I'd have told me to go to A&E several times by now! I would actually appreciate someone telling me what to do; AUK nurse told me off for not taking it seriously enough and I kind of felt like saying I used to but it didn't seem like anyone else did a lot of the time even when I fulfil the criteria for needing urgent help. Problem is, I have 'got away with it' a lot ie NOT needing resus which makes me think I can again. Also, a lot of the time all the salbutamol will kick in later, which if I'd gone to A&E would be around the time I was getting assessed, so I am reluctant as I'd be seen just as I'm getting better and would worry that they'd think I was being massively overdramatic even though I'd been struggling earlier. (The time when this didn't happen and I should have gone, I had a GP appt the next day and thought I could wait.)

    (I""m completely aware that much of this may not make much sense or hold up in any way as a sensible reason for what I do - it's just how I think. I need someone sensible to tell me what to do and whether I'm being overcautious or not cautious enough (I sure as hell wasn't thinking straight the time I didn't go because I had the GP appt...as I discovered when picking up the pieces of work I'd been trying to do while taking loads of Ventolin and trying to breathe! Definitely not the time to try working).

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