i think im being a bit panicky and silly. i have been having a lot of trouble with my asthma lately (as ive mentioned in other posts) and when i was home from uni for christmas a new consultant saw me and wants to keep me being treated under him while im back at uni, this is fine by me as i have heard bad stories about my old one, and whilst his reg is lovely, he can be a bit patronising, and disorgansed. I have just got back to uni and two of the tests he ordered have come through. the one for general pulmonary function testing and the mannitol challenge the next day. firstly i am terrified of the mannitol challenge, i know in my head that they arent gonna give me something thats gonna kill me but i feel scared that they are TRYING to induce an asthma attack, even in a medical setting doctors seem to find it hard to get me back under control when im bad and the idea really freaks me out. i also do NOT like the idea of stopping my seretide, i can tell when i've missed a dose and i really struggle, but i'm also scared that if i dont stop the medication then my lungs will be less responsive and so i'll get a negative test result and what if they use that to stop the meds that whilst they havent stopped severe and scary attacks, they have JUST started making my everyday life possible. and what if i am undiagnosed (i dont know what the proper word is) with asthma, then what do i do when i have attacks? would they still give me nebs? magnesium? hydrocortisone? because surely these are asthma treatments, and thats what works, but they might not give me them, and my o2 sats are always fine, its my co2 thats a problem, and they might not know that as they dont always do ABGs surely? i am really good at spirometry, i personally think i do it without really relying too much on my lungs due to years of flute playing (i did a flute exam during an attack and was still getting notes out - i couldnt talk in sentences but could just about play - i really dont know how!) and because this consultant was reluctant to say anything at all about the problems ive been having before he'd seen all the test results i'm scared he is going to be relying on these really heavily, especially as he's unlikely to ever see me when im having an attack as i'll still be at uni, so won't be in his hospital!
sure i'm just being a bit mad, but needed to have a worry somewhere or i wont be able to stop thinking about it!!!
hi soph i'm sorry i've never done that test so i can't help but thought i'd say hello from a fellow flautist who can also play whilst feeling bad!
I once went on a pilgrimage with my parish and the priest had asked me to bring my flute (he gave me the place for free so i couldn't really refuse LOL). Anyway this was pre-smoking ban and i was surrounded by smokers 24/7 - literally as i ended up sharing a room with a smoker ggrrr. Well by about 3 days in i couldn't stop coughing - in fact i stopped saying the prayers during masses cos speaking made me cough but somehow i still played all the hymns!
Sorry but i also dont know the mannitol challenge and not sure ive entirely understood the post correctly...
However I suppose it is best to stop preventer as instructed. Just have to ""grin and bear it"" re extra symptoms for a few days. And i wouldnt be too worried about it as it seems to me docs always have another trick up their sleeve is the iv magnesium and hydrocortisone what you usually get for a severe attack? If not then yes thats some possibilities. I would also imagine that cons would never even suggest this if he thought it was really too dangerous etc.
I've never actually managed to do the mannitol test as spirometry has been too bad or lungs have been too twitchy. Don't worry, they check your spirometry before the test and if its not great (different cons have different cut offs) then you won't be allowed to do it. With me they've also made me neb saline prior to the test as if your lungs are mega twitchy like mine they react to the saline so no point/too dangerous to do mannitol. They also check spirometry between goes with mannitol and the aim isn't to induce an attack but to see if it reduces your fev1 by 10-15% (again different cons have different numbers).
Can't really suggest anything re stopping meds before the tests as I've never been allowed to do this due to twitchy lungs. They just noted what I was on at the time, though I still reacted to everything!! How many days are you meant to stop meds, as usually it's only 24hrs which may not be too bad?!
Best advice really is to just do the tests to the best of your ability ... Something is obviously going on otherwise you wouldn't have been so poorly and hopefully these tests will help find some answers and treatment that helps.
B x
jinglfairy: do you find you have good peak flows and low fev1s? but that both are pretty consistent even when youre symptomatic? its soo annoying!!
hannahrose: yeah soorry, im not good at expressing myself when im worrying, im doomed for my philosophy essays! i guess i know i just have to cope without the meds, i just dont wanna end up back in A&E. yeah i quite often need magnesium and hydrocortisone to stop my attacks now, im usually struggling too much to even get the nebs into my lungs where they could actually work! when my breathing starts to improve and i can get the meds in i tend to improve pretty quickly! i think i feel like with an asthma diagnosis i know just about what im up against, i dont want them to not know whats going on!
B: glad to hear that they do actually take the current state of your lungs into account, it says they do but i was worried that they'd have to be REALLY bad before they'd cancel! i didnt realise that lungs even could react to saline lol! shows how little i pay attention. so did you mean that you didnt actually stop your the meds? some meds have to be stopped 4 days in advance, but the ones i really think i'll struggle without are 48hrs. i know i'll have to be on at least some pred which i guess they'll take into account. you might not know because you didnt actually do the test part, but do you do a best of three spirometry type thing between each one (so like doing peak flow but with more info) or do you do more than just basic spiro, or do you not do best of three?
They will do reversibility test first usually. This involves best of three spirometry then a neb/salbutamol in spacer, then spirometry again to see how much it improves. If spirometry hasn't improved by a significant percentage, or to above 70% ish predictive/best then they usually won't go on to do provocation tests like mannitol.
Most people don't react to saline, or if they do its to hypertonic saline ie 3% but my lungs are special!
Nope I've never stopped meds as cons thought it too risky. It's beneficial if you can to stop bronchodilators for 24hrs before (LABA, theophylline etc) a d try not to use salbutamol for 4-6 hrs before test to get best result from reversibility test. Maybe ask what's necessary as like you say pred may be an issue.
It's usually best of three, my hossie have spirometers which measure fev1, Fvc and pf so does all three!
Hope this helps
B x
soph, i have no idea about fev1 i presume that's only tested when your asthma is really bad cos i've never had it tested at all. BUT, yes my peak flow tends to stay consistent regardless of symptoms :-s
I've done the mannitol test. For mine they had a lung specialist there the entire time, and they give you some of the triggering mist, then do a PFT, then triggering mist etc. I was sick so having lots of trouble breathing. Mine was actually negative, but I have some other breathing issues as well which were positive.
It was kind of amusing though, because the doctor sitting in the corner had a respirator/mask on as he was asthmatic, and wanted to be able to breathe too! At least he was sympathetic.
Bee
you got a negative test result? and they stuck with an asthma diagnosis, what did they change as a result of the negative result? did they stop/alter any meds? i'd be really interested to hear your experiences as i'm worried that just as i'm starting to regain control i could get a negative test result that would stop the meds which seem to be helping!
jinglfairy - yeah fev1 they do with spirometry, although i have a piko1 peak flow meter which also does fev1, ive noticed that this is the most representative of whats going on, but still not perfect!
I'm glad you posted this because I have many of the same concerns/question. I see the pulmonologist at the end of February.
The idea of skipping a day of meds is also worrisome to me considering that my symptom diary makes it really clear that I'm sensitive to the occasional missed or overly delayed dose.
FEV1-PEF: I have an old spirometry test from years back in my files that shows a really big gap between FEV1 and PEF - PEF was normal whilst FEV1 was moderately severe. From what I've read, FEV1 is considered the gold standard for lung function not PEF, so I doubt anyone is going to say you don't have asthma if the PEF is normal.
Negative tests: I've mixed feelings about this. One part of me wants negative tests precisely so I can say ""this is all in my head"". That would mean I can make it go away simply by changing the way I think of things. The other part of me wants to numbers so that I have some objective confirmation of what is going on.
Mannitol challenge: also sounds ugly to me.
stray: i have a bit of paper that i carry with me that says my best peak flow and that i usually end up in resus and that my o2 sats WILL be fine. fortunately for me i am usually very tachycardic so they like to do an ecg, so at least i get to see a doc quickly, and the docs usually work out that im suffocating! my appts are early in feb, so not too long to wait, tbh im impressed as to how quickly the consultant got them organised, it took about three onths for my old consultant to do a lung function test!
beth: im not organised enough to keep a symptom diary (im trying to be good but its soo annoying) but i can deffo tell if ive forgotten to do them. glad that fev1 is more 'important' than PEF, one less thing to worry about! See i have thought about negative results, i know that ignoring it doesnt work to make it go away, i do lots of denying it type stuff, i listen to music whenever i have to walk anywhere so i cant hear my lungs, and watching TV when im dying to distract me. so im really scared that if its in my head im not going to be able to stop it, as i always seem to assume its in my head and that doesnt work! i just want a test that shows how rubbishy i feel!
Stray and Soph: I don't think my asthma is as severe as yours but I do completely understand how you're feeling! I've never been to A&E; don't think I've ever *needed* to (still here, anyway...) but I probably have needed to go to OOH a few times, and sometimes have done but not really got anywhere (all I really wanted was more than I could do at home eg a neb, not 20 questions, but I never got it). It tended to be a mix of 'wait for the consultant's opinion' (yes, great, but I am SOB and having trouble NOW!) and 'it's just anxiety' (no it bloody well isn't, I don't even feel anxious now when it would be reasonable given I'm having breathing issues, but how can I argue when you're not listening and I feel rubbish?)
My metrics make no sense at all a lot of the time - partly technique I think, though it does seem that it's partly because the 'best' for everything is better than it should be, and I do respond well on reversibility, even if it's just to get my screwy results making more sense. I don't even know how bad my asthma is except that it's not severe, but like you both I have been really, really scared that when I finally got medication that made a difference (and it took a while of me being not able to do that much even if I wasn't going to A&E) someone would decide it was all in my head (again) and take it away.
I also had a negative challenge test (histamine not mannitol but same idea, followed by a Ventolin neb which really improved my results) and was so disappointed when it was negative because everything I'd seen suggested it was the 'gold standard' for diagnosis (the physiologist doing it clearly thought I had some weird issues so I had to explain why I didn't want it to be normal). But while I don't know why it was normal (not sensitive to the challenge stuff? not stopped meds for long enough before?) the consultant - and this was a specialist asthma place - didn't seem that bothered and didn't tell me 'oh you can't have asthma'.
SO best of luck to both of you with the tests; really hoping you find some answers but I don't think they will just say 'oh you don't have it'. Not that it doesn't happen and it's happened to me at least twice but there are some very good consultants out there who will listen! Plus unlike the A&E ones, they have a bit more time and a bit more expertise.
Soph - telling myself it is in my head doesn't work very well for me either. At least one factor in most of the sudden flare-ups I had the first two months of this exacerbation (started end of October) was my ignoring symptoms and telling myself to ""just push through it"".
It works up to a point, and then it doesn't. One of those earned me a visit to urgent care, doctor's orders. One landed me in the nurses station at my doctor's office with a neb mask on my face. (I was walking to the surgery to pick up something and arrived right in the middle of a flare-up that started on my way there. I didn't want to 'give in' and take a taxi or even a bus.). Not as serious as ending up in resus by a long shot, but still not really the best or most responsible way to manage asthma and not really worth the ""award"" of pretty little pink pills.
For some people, ""in my head"" actually does solve a problem, but for some of us it makes things worse.
Doctors, at least the good ones, are supposed to care about symptoms and not just numbers. Your experience that telling yourself that its in your head causes problems rather than helps matters, or at least it should. Your experience that the drugs you are taking help matters. Even if they don't fix the whole problem, if you can give some examples of how you know they prevent some of the problems, that in itself is telling.
Your landing in resus is enough to believe that there IS a real problem. The only goal behind all those tests is finding clues to what will solve the problem. If the first set of tests don't find the reason, they'll just do ""more tests"" until they do. No one wants you to keep racking up resus visits or being so ill that you can't complete your studies.
beth: yeah i once walked into my GPs, with a really loud wheeze, and couldnt talk at all and i was in full denial mode and so instead of wanting to see a doctor i happily went along trying to order the repeat prescription i needed until the terrified looking nurse sent me to sit in the waiting room while she went to find a doctor. when i got into the docs and optimistically tried to order the prescription (in the hope that the receptionist had just been concerned about when i would get my meds) and when the GP mentioned the horrible sounds my lungs were making i managed to wheeze ""i dont want to go to hospital"" she laughed and said ""well, im going to ring an ambulance and while we wait for it to arrive you can tell me what you thought i could do to fix you"" hehehe! so cruel! my mates have now learnt that while im violently protesting and not letting people ring 999 i'm probably going to be ok for a while longer, the second i accept that i might possibly, sometime in the future maybe need a little bit more help than i can get at home then im in real trouble! lol! the denial stage of my asthma attacks is a fun one! i try so hard to be sensible but as bad as it is and as much as it shouldnt be the case, my care is so much better and more efficient and i'm treated so much better if i go in while im really ill.
philomena: i'd probably cry with a negative result. i cried when i was denied a really painful and unpleasant op, which i didnt want but i so badly wanted to have SOME treatment, even if it was horrible it was something that might make me feel better! thanks for sharing the 'good' response to a negative test result, makes it much less stressful, and therefore probably better able to do the test! what did they say when you got a negative result, did it change treatment options?
Soph: nothing to do with mannitol test lol but youre last post reminds me of me. Lately i had one really bad attack when i was almost losing consciousness was outside with some friends. One said: i need to make abphone call"" so i wheezed out my reply: youre not ringing an ambulance for me are you? He wasnt but i got my blunce soon enough... Another time the nurse came round to help me get up like she does everyday. Me pretending like it was a perfectly normal day but when she heard my breathing she promptly called an ambulance. Also i completely broke down when i was told the surgeon wasnt gonna remove my spinal tumor: even though his reason was that he didnt think i could survive the op. I stilll wanted to try...
Rose xx
that would be me. if i cant talk anymore i just type 'no ambulances' on my phone and show them, and my mates try to find sneaky ways to ring one anyway! i once spent agees walking around campus trying to find someone who would sit with me incase i stopped breathing, but who i thought i could persuade NOT to ring 999, found someone who immediately rang 999
and yeah, my op was unlikely to be successful and involved breaking lots of the little bones in my feet which would mean not being able to walk for ages and possibly not being able to walk again. still wanted something to stop being in pain! sigh!
i very occasionaly sound really bad and feel ok (i think its when i have a chest infection starting and i get something a bit loose but havent coughed it upand it just rattles aroung in my lungs not doing much but making noise) and i'm happily carrying on and everyone around me starts panicking. its actually kinda funny when you CAN breathe!
lol Soph! I am shocked hehe but this is also pretty funny imagining you staggering round campus in denial! I'm very glad your friends don't listen to you.
I completely understand about wanting some kind of treatment even if not nice, but often drs don't; they won't get why you want ANYTHING that might help and start looking at you like you're some kind of nut. I used to be desperate for something about 18 months ago; I had no asthma medication at all except Ventolin because the consultants kept insisting it was in my head and I didn't need asthma medication which would be 'bad' for me (the stuff the GPs tried hadn't worked, though given the recent thing in the news about mutations and Serevent I think I understand why now). The cons I was seeing then hated the fact that the GP had tried me on pred because she was so sure I couldn't have asthma and therefore wouldn't need it; I was just desperate to try something!
Eventually I think my GP had had enough of seeing me come into his room like an old lady who'd been smoking 20 a day for 50 years (turns out my current housemate, who I first met in the middle of this phase and is a medic, actually thought I'd been a heavy smoker who'd got unlucky and had COPD - in my 20s!). So GP prescribed montelukast, which finally worked and gave me a diagnosis.
Re the challenge test: I'm not really sure what it changed. I think it may have just meant they didn't change anything as it apparently meant I was well controlled. They also found a breathing pattern issue caused by the asthma (perhaps not surprising, I expect I picked up bad habits without noticing when I was uncontrolled) and wanted me to focus on that. They are still saying it's well controlled and I did have a good month or two but kind of slipped back so if this keeps happening I may say that the breathing is improving after my work with the physio, but the asthma still seems to be up and down at times.
Philomena - just wanted to say that your persistence in listening to yourself and getting help is really impressive. I would have been only too happy just to give up and assume doctors had nothing to say, and that I was just designed to be huffing and puffing had I been in your shoes.
Thanks Beth! Actually for the first year or so it wasn't so bad so I did kind of accept it when they said it was 'overbreathing'. But then it got worse steadily after another cold (originally it was after swine flu) and eventually it was bad enough that I was being overtaken by old ladies with walking sticks and any sort of effort left me knackered for ages, so at that point I really felt I had to do something because I was 25 and they were saying I was fine when I couldn't even walk up and down the corridor at work a few times without getting SOB and exhausted.
I think it was mainly this forum that kept me going - I learned a lot, including that other people with asthma had v similar symptoms to me. Plus I had mild asthma as a kid and my mum's family is stuffed with asthmatics so I found it really hard to believe I could have asthma-like symptoms after infections and it not be asthma! I did hate, hate, hate the whole 'it's in your head' thing so much though, because it felt so dismissive and like they were calling me some kind of hysteric or hypochondriac who was just making a big fuss - and it was never like I even thought I had severe asthma, they just didn't seem always to understand that any kind of uncontrolled asthma can be miserable.
Also, my GP is a 'think outside the box' type and he went on what he saw and what I said, because he actually trusted that when I said I could or couldn't do something, I was probably right; he also said the tests weren't the be all and end all if someone was evidently symptomatic (and I definitely was; medic housemate only told me recently what he'd thought at first about the smoking and then said 'but it's much less obvious now, massive improvement').
oops sorry for rambling on about myself again. I hope this helps you though Soph and anyone else with a similar experience who's not already read my many rambles on this subject lol! I have found being a pain in the arse pays off in the end, but it helps to have drs who are willing to be a pain in the arse on your behalf. The AUK adviceline was/is great too.
My take away from your two posts is that it pays to listen to one's self. Your life seems a lot better for your having done so. Most of the time it's me that needs convincing, not the doctor's I've dealt with. I see the symptoms. I see the price I'm paying by ignoring them. But I don't want to interpret them for what they are. I'm reasonably good at asking for emotional support when I need it, but I REALLY hate asking for help for physical/medical things or even the idea that I might need help.
Not quite sure how to be a pain in the arse to myself.
(I am getting better at it, but that's why it helps to hear the experiences of people who are better at it than me.)
Well, I still had a lot of doubt at times. And I've never really liked seeing doctors and having to talk about my health (or lack thereof); I still don't like it because I make an idiot of myself in front of them (though I think part of that is me being always worried, however much they have shown they're not like that, that they will tell me it's in my head, or just send me away without any treatment - nerves make me babble like an idiot and forget things, I do it in job interviews too though not with public speaking).
I'd actually much rather ask for help with something physical/medical than emotional though! I do not like talking about my emotions at all so I never really said properly to any doctor how much this bothered me at times and how it was affecting my life - I'd much rather go and say 'my lungs are doing x' and they deal with it all on a physical basis. I tend to think of sympathy as fussing even if it isn't, though I do like it when drs treat me as an intelligent individual with a life beyond their consulting room.
Maybe your doctors need to be a pain in the arse to you? Though of course they're not there all the time - perhaps you should ask them to record some basic phrases like 'Beth, are you coming to see me with a PF like that?' and 'Beth, is that a good idea?' lol.
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perhaps you should ask them to record some basic phrases like 'Beth, are you coming to see me with a PF like that?' and 'Beth, is that a good idea?' lol.
LOL. Interestingly, what has worked is doing something like that to myself. In the last month or so, when my emotions are playing the part of an annoying adolescent saying ""I'm invincible. I can control anything."", the more analytical part of my brain tends to grab me by the metaphorical neck and says ""You are using the ventolin NOW. You are going home to rest. And you are going to call the doctor in the morning even if you don't 'wanna'"". It usually does work. But I don't like it.
But this is really Soph's thread, so I'm going to shut up now.
Ooh this is all getting my head running round in circles again...
Philomela I HAVE actually been given a copd diagnosis last year at 22 but thats with at least 3 different problems attacking my lungs at the same time (asthma, bronchopulmonary dysplasia and wegners vasculitis). Also I keep badgering my docs to start ky chemo even though obviously rhis is probs gonna have devastating side effects. But then if I didnt oeep hoping for the chemo the alternative is not very bright to put it nicely. So yes im also always being a pain to the docs. Though some are pretty dumb. First lung cons i saw at my local said he didnt know anything about bpdysplasia and didnt want to know cuz he reckoned it was all in my head. (yes i do have a serious mental illness but that doesnt mean i cant have other probs...) a few weeks later had my first coma in the icu at specialist centre. Also in icu was my ex room mate from local lung ward. She had a lung and brain tumor and no one at local had cottoned on. I could rambpe for ages about the scary stuff that happens. But i think i have a warped view on this as i over use the health system
Sorry dont suppose that was helpful to anyone but i got it out
Rose xx
yeah, its probably for the best that my mates have least to ignore me, in fact the more strongly im resisting 999, the more keen they are to ring now!
all the little rants and moans help me feel like its not just me so thanks guys starting to feel really rubbishy today (maybe getting a chest infection as i dont usually cough much with my asthma and im starting to) an my pred is the lowest its been in three months, down to 15mg had a hard time getting to my lectures today, just want to be well enough to go to tea at my mates tonight. think i might be heading down to my GPs tommoz if i manage to avoid A&E tonight. sogh! so frustrating! i just want to get on with my life!!!!!!!
rose:its always shocking the stories you hear about the way some people get dismissed until they're in a lot of danger! but it helps convince me to stick to my guns when i am ill and make sure i get treated right. i dont understand how some doctors can know so little! its impressive! i was in hosp with one woman who CLEARLY had a bad chest infection, o2 sats were down and she was producing a load of green gunk. was diagnosed with tonsillitus and given penicillin for two days until the consultant came round and laughed at the embarrased looking reg who just feebly said ""well her tonsils look quite big"" lol!
i hate thinking that anyone isnt taking me seriously, i cried when i got better after two nebs in the ambulance as i thought that even though i needed more than i could get from my inhalers, that the A&E docs would think i was fussing. it seems to me like once your asthma counts as 'severe' you arent allowed to come in unless its a really bad attack and requires more than just a couple of nebs, whereas a mild asthmatic would be fully expected to go in for a neb. this is a problem with a lot of medical peoples attitudes and needs to change!
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it seems to me like once your asthma counts as 'severe' you arent allowed to come in unless its a really bad attack and requires more than just a couple of nebs, whereas a mild asthmatic would be fully expected to go in for a neb. this is a problem with a lot of medical peoples attitudes and needs to change!
That's exactly what I've noticed. Visit number three, when I decided just to show the referral letter to the pulmonologist rather than tell the whole story yet again, the doctor who checked me out was like ""ho hum. You need to do a nebulizer treatment - you can do it here or at home."". (I do have a home nebulizer).
But in your case, you have to go in, because your doctor isn't letting you have a home nebulizer because it seems when you go down, you REALLY go down.
Actually, from the point of view of self-management of asthma, I'd ignore the ambulance crew and anyone else who gives you a hard time. The fact that you caught things in time early enough that it took only a couple of nebs in the ambulance means you are on the right track. That's a victory, not a failure.
dont worry, i can share
i try hard to see it like that, and i'm really not sure what they expect me to do at home, as like you say i am not allowed a home nebuliser! but i think as most of us on here experience at some point, medical professionals seem to treat asthmatics as either overreacting or irresponsible!
lungs really unhappy today, so i've updated my 'bit of paper' which tells paramedics what to do with me (most importantly, and the only think in capitals is DONT CANNULATE MY HANDS!!! they love the veins in my hands but i find it equally painful to ABGs most of the time) fingers crossed i can make it to tommorrow and see my GP, if i can walk that far! (dont worry, i'll be a good girl and go if i need to!)
you must find it even more frustrating than me when you go in and ""only"" need nebs! sigh! thats one disadvantage of home nebs!
just had the most horrible trip to A&E. firstly i got the kind of paramedics that think one neb is gonna be enough to wait till the ambulance gets there, and then all the way to hospital. secondly they didnt take me straight to resus when im fairly sure that was the best place for me tonight. and then i was left, for a really long time, so long that in the end i started taking my ventolin again, so i was at least getting SOME medication. by the time a doc actually came to see me i was definately ready for resus, still no. one more neb and another good hours wait. and then not for more treatment but for a cxray which im sure is important but at the time not the most pressing concern, surely. i was still unable to talk in more than syllabuls. anyway, cxray came back showing that i was starting to get a chest infection. was i given any antibiotics? no! she said i'd get some, but never actually bothered to give me some. despite me giving them a list of my medication and instructions (such as, try to avoid giving me tablets when im really struggling as i find it hard to take them, and yet was still given predtabs, not the soluble stuff) they still didnt seem to realise i was on maintainance pred, so seemed surprised when i queried wether they meant to give me the full 40mg, then a lot of messing around while they checked, one doc told me to take all of them, than immediately after i had taken them another doc came in and said to take out the three that i had taken this morning - too little too late! after a long time with no further treatment i was given some magnesium, by this point i was feeling very very out of it and unable to really stay awake, but there were no buzzers near me and i still couldnt talk, no-one noticed this for about half an hour, by which time the magnesium was beggining to take effect and i was feeling a little more alert. anyway, after all this, a doctor came in, noted my audible wheeze, tachycardia, fluctuating BP, and said i was free to go home. i was still really struggling but so shattered (i wonder if my co2 was up as thats the only other time i have felt so out of it, not just tired, more than that - although in the 4hrs i was there noone did an ABG despite the fact that my instructions mention that i can get high co2) that i didnt think of all the questions i should have, such as, what am i meant to do with my pred, why have i not been given antibiotics, i forgot to remind them to take my cannula out (fortunately i know how to do it) and also didnt ask when i was meant to ring 999 again. i was so wheezy and SOB that if i'd been at home i wouldve been doing 'last minute treatments' before ringing 999, but if they were sending me home i surely couldnt come back in without getting worse. fortunately as i got home i took a load of my ventolin, and coupled with the delayed effect of the magnesium (and possibly atrovent/steroids) i am now feeling much better. still wheezy, but manageably so. i will obviously be going to see my GP tommoz, but just so frustrated at how poor my treatment was today, i've had some really good experiences in exactly the same hospital, but all the staff tonight seemed rushed and disinterested. wasnt really sure where to post this, but just had toget the rant out of my system! sigh!
You got a negative test result? and they stuck with an asthma diagnosis, what did they change as a result of the negative result? did they stop/alter any meds? i'd be really interested to hear your experiences as i'm worried that just as i'm starting to regain control i could get a negative test result that would stop the meds which seem to be helping!""
So I love this thread because I can so relate to a lot of what you guys have said. My doctors told me my breathing problem was all in my head after the challenge test, and I was taken off all my asthma meds at least three times for 3-6 months at a time. Well, it was a disaster. I coughed/wheezed the whole time. My co-workers (who are doctors) were horrified, and my actual doctors kept telling me I was was crazy.
Well, it just kept getting worse and worse. I have a vascular ring, so eveutally I was diagnosed with repeated cases of aspiration pneumonia and had major aorta surgery. Yes, really.
Then, I ended up with my pulmonologist's partner, who was actually nice to me in the middle of the above crazy senario. Well, I offered to do a second challesnge test, but he was like ""what's the point. If the second one is negative we'll be in exactly the same problem."" So I think eventually over a few years I wore him down! Now he agrees I have asthma, I'm back on the inhalers I was on before. And I have pred. I can take at home if I need it. So much better.
But in the end, I get symptoms when my allergies are bad outside. When it rains. And certain specific times of year. I just kept asking, ""really what else could it be?"" Also, my PFT and other tests were diagnostic of asthma. So even though the challenge test is the gold standard, I was told it is still wrong 10% of the time. And the meds. help. So there you go.
And the irony of the whole thing since my famiy doesn't believe in illness, and then my doctors all told me I was crazy, I also put off going to the docctor/hospital crazy long. So if you actually hear me at that point, I tend to scare people. Oops.
Bee
Oh my Soph, what an awful night!
Soph, that's terrible, I hope you feel you can complain when you're feeling up to it. Just leaving your cannula in would stand as a 'near miss' surely. You're not trying to get anyone in trouble, but the staff need to know how badly you were treat and learn from it, the only way to do this is to complain.
Hope you're feeling better today and you get more sense out of the GP!
Really well said, Stray.
They messed up my pred order on the ward before Xmas. The doc ordered a week of 40mg. I pointed out that I had already been on it 3 days. So the doc said ""A week less 3 days"". The order was written down as ""A week plus 3 days"".
Between that story and the canula(!), we really do have to be ""expert-patients"". Don't we? Not really ideal when the main thing we're trying to do is get the next breath.
Soph - how did the GP appointment go?
Sorry to hear about your crumby AnE visit. Hope you feel better soon and GP gets something sorted.
Rose xx
hi guys, thanks for all the nice replies, glad i wasnt being ridiculous! rang gps this morning, and they said if u want same day apts then u need to wait for a phonecall to assess you. but when i explained y i wanted the apt the receptionist agreed to just give me one. anyway, when i got there the nurse listened to my lungs and stuck me straight on a neb. no improvement and peak flow well below 50% so they rang 999 much to my disapointment. sigh! was seen by an annoyng doctor who was convinced it was vcd (i have ha this ruled out based on symptoms, with the possibility of looking into it when my asthma is more controlled) but then this really nice consultant came and was really helpful and listened to how i felt. he also accepted that my HR was due to difficulty breathing, not just nebs. and that good o2 sats didnt mean i was ok. and made it clear that vcd would be a secondary diagnosis. more magnesium,hydrocortisone and back to back nebs and i feel the best ive felt in ages despite being stuck in hospital, i can breathe!!! yay! fingers crossed for home tommoz and see my consultant as an outpatient! hope everyone is well x
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i feel the best ive felt in ages despite being stuck in hospital, i can breathe!!! yay! fingers crossed for home tommoz and see my consultant as an outpatient!
Breathing feels good doesn't it! I'm glad you finally got what you needed.
Hoping things stay up and you get home soon.
Soph, I'm glad you have finally got the treatment you needed and are feeling better
I have brittle asthma and VCD (VCD only recently diagnosed) but whenever I end up in hossie (like u usually resus) they always treat the asthma first. (which so far has responded to the asthma treatments un resus so was asthma on those occasions).
Drs should definitely treat VCD secondly if you're not responding to asthma mrds (that's what my cons has advised anyway).
X
Hi Soph. Glad you got the treatment you needed and are feeling much better now. Hope you escape assoon as is reasonable!
Rosexx
thanks guys got home late yesterday, and despite being completely exhausted i'm not feeling too awful. got another appointment with my GP tomorrow, hopefully this one will go a little better (about a multitude of issues so its gonna be a rushed one!) my usual consultant was quite unhelpful and told me how obvious it was that i've gained weight, especially on my face and that i shouldn't be on steroids at my age. so i asked what alternatives there were and he said none, and increased my dose of steriods which if i'm honest didn't make me feel particularily great in myself, but there you go. i just rose about it. Im now seeing the ENT people as an outpatient, would've rather done it while i was in but there you go. they remembered to de-cannulate me this time, although the one that had been left in didnt have the bung fitted correctly so it fell out while i was asleep, fortunately i woke up before i lost too much blood, but quite shocking!
glad to hear that asthma is always treated first. i dont really seem to have VCD symptoms, but clearly something the doc heard made him suspect it. and if its a contributing factor then i guess it has to be conidered! hope you're all well! x
Hey Soph glad youre home!
I sympathize with the stupid comments about steroids at your age etc been there done that wow another shocking cannular mishap. They dont seem to have a very good record forthis at your local?
Hope the gp appt goes ok.
Rose xx
ugh, your consultant needs training in communication skills. That is so rude and unhelpful - why would you tell someone that about their weight when there's nothing they can do about it? It's bound to make you feel rubbish and he really didn't need to comment. Plus how stupid and pointless - at what age are steroids ever a 'good' thing?! If you're unlucky enough to need them then you need them.
Best of luck with the GP appt, hope you get a nice one who takes their time. Mine is always really good about giving me the time needed and not rushing so hopefully you'll get a good one and get everything in!
Hi Soph,
Glad you're feeling better! What a nightmare. I'm glad at least your GP sent you back to hospital. And that is a terrible comment from your consultant. Everyone keeps telling me I need to lose weight too, but it's so hard when I'm hungry all the time due to pred. Oh, and I went to my GP the other week and he confirmed the pred. has caused my blurred vision, due to affect the lens on my eye, and the swelling below my left knee (that has been tested for a blood clot three times) is caused by fat redistribution from the pred. He said if I could stay off the oral steroids for 6 months, it might go away. But I just don't think that's going to happen!
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is the iv magnesium and hydrocortisone what you usually get for a severe attack? If not then yes thats some possibilities. I would also imagine that cons would never even suggest this if he thought it was really too dangerous etc.
Asthma team and Consultant visit!
Chest Infection and new Biologic
fed up😭😭
