for the last few months my asthma has been completely uncontrolled, i'm in A&E ALL the time, and it's driving me a bit bonkers. i just feel so out of control. i'm taking seretide, fluticasone, montelukast, theophylinne, prednisilone and meds for reflux. no-one is ever gonna give me home nebulisers as they all know how much i HATE ringing 999 and will never trust me to be sensible with it (i would be, but they just dont believe me - but tbh i dont want to need home nebs so i can cope w/o). they've found my ige levels to be high and implied they were thinking about xolair (but i dont know if its suitable as i didnt ask the actual numbers)
does anyone know what sort of things could be tried next? i know it depends on individaul circumstances, but i just feel like i need to know that there is more they can try, and that its posible for me to get off these stupid steriods!!!
also, during my last attack they did my ABGs (ugh) and found my CO2 was a 'little' high, i got the impression it was still just about normal, but borderline. what does this mean, is it the same effect as when people hyperventilate, or the opposite? it seemed to make them more worried but my oxygen levels seemed normal so why would this be?
thanks for any advice - i'm finding it really hard to feel this rubbish and like my life is on standby all the time! x
I am a complete stuck record, I ALWAYS seem to say this lol but...I would first of all give the AUK adviceline a ring and see if they have any suggestions. They may just tell you to discuss it with your consultant but they may also suggest some options for you to discuss.
If your consultant(s) really are at a loss about how to proceed, I'd suggest you ask for a referral to a specialist centre like Heartlands (in B'ham) or the Royal Brompton (RBH) in London - there are others around the country as well. Because they specialise in difficult asthma (doesn't even have to be severe, they deal with me, which is how I know how they operate!) they have more in-depth knowledge about it all than a 'general' respiratory consultant might, and tend to also be good at finding and treating anything else that may be going on alongside the asthma and messing it up. You'll
Crossing fingers you do get somewhere as this must be so frustrating, but a fresh look may well find something no-one else has thought of, so I'd definitely ask to sit down and go through things with your consultant when they're not just trying to sort the emergency things.
EDIT - was trying to explain the CO2 thing but Stray has done it way better than I could!
Think the high IgE as Stray says indicates a general 'allergic' response (I didn't put that well but it suggests you're reacting to something; my total IgE was also really high the first time it was measured though normal later I think). Have you had skin prick tests to see if you have specific allergens which you could try to avoid where possible?
Like Philomela, I think it's good to talk to the AUK nurses, as they have time to talk through many different options that you don't really have time to discuss with cons, so that when you do see cons you know what they're talking about. And if your cons is stuck on what to do then I'd be wanting to be refered to a severe/difficult asthma clinic.
I hope you can get some control soon, as it sounds like you're having a really rough time. Hugs.
i have asked about being reffered to a difficult asthma place, but they dont seem to want to, they keep saying 'we need to do ______________ first"" and so now im waiting for a chest CT. it's a little frustrating, but i understand they need to rule out other stuff, but it feels like they're being really patronising by not telling me everything they need to do and then just doing it.
they also said there are a few more things that they can try, but with a bit of googling the only stuff i could find were things like xolair and sub-cut terbutaline which only seemed to be available at specialist places? is this wrong or are there other things that i just couldnt find? someone once mentioned oral salbutamol liquid stuff, but they said that they had it a long time ago and it was outdated then, but its not someone i knew well so dont know how reliable this is.
i'm just getting so frustrated, i seem to spend all my time in hospitals and the thing about my lungs is they are either really really rubbish, or i can struggle along at home, i never 'feel' like i need to be monitored in hospital so as soon as ive been treated i want to go. i can barely cope with waiting for prescriptions anymore - i just want to go home. sigh! back to my usual hopsital soon, and i can't wait to be with nurses and doctors that know me and not only will take me seriously but are really friendly. i can relax a little as i know they know that if i do snap (i try so hard as i know its there job but when im feeling really awful and they come at me with ABG needles its soo hard) they know that im not horrid. and theyre much better at realising when im going back downhill again. i just feel much safer there. i'm quite looking forward to it! hope everyone else is doing ok!
Hi soph,
I totally empathize and understand your frustration. I've had asthma all my life but in the last 3.5 years its got worse and the last year has been ridiculous.
I too have beeb trying all sorts of meds but nothing is controlling my asthma.
I am currently on (and I only mention these incase you want to discuss them with your consultant):
Symbicort smart
Salbutamol inhaler
Spiriva handihaler
Montelukast
Salbutamol 4mg tablets (3 a day)
Omeprazole
Prednisolone
Cyclosporin (steroid sparing drug as trying to get off the pred)
Adcal
Alendronic acid
I am about to start home nebs which had been ruled out as I go downhill very fast but as meds are not having enough effect and I still end up in hossie he now feels I need them (he didn't want to.give them before due to risk).
Will start uniphylline in next couple of months.
If this doesn't work then I will be going to the royal Brompton but this eill mean a weeks stay for lots of tests.
I too am a CO2 hoarder who rarely drops oxygen sats unless I've been having a severe attack for hours and hours.
I will also say I will be starting speech and language therapy next month for VCD as I have this alongside brittle asthma, has your.cons mentioned this at all? Just q thought.
Well I hope the ramble helps, I just wanted you to know there's more that.can be tried .
X
Sorry but just to add I am always desperate to leave hospital and as soon as my attack is finished I'm nagging them to let me go home.
I totally get the not wanting a neb, friends and family have been nagging me for a couple of years about it but to me it just seemed like a step too far from 'its just asthma' 'ill be ok in a bit' to 'im nebulizer controlled'.
I just.didn't want.to admit I'd.reached that point but now I'm at a stage where it will give me a better.chance of getting out and about rather than just sofa surfing and that's now a better option but it has taken me a long time to be ok about needing it so maybe.not yet for you but don't discount it for the future.
God I've rambled again, sorry!!!
Lol x
First thing I do once I can speak in sentences is ask to go home, usually during a neb, after magnesium, sat in resus! at my local hosp it's now a joke! I don't mind tho, nice to have people who treat you like an actual person, they also know that I need food pretty fast once I can breathe again lol (and oxygen through nasal cannulas if its been a long attack for while I eat) hehehe! Can deffo tell which staff have met me before was having a horrible moment when I had been exhausted when an attack started so rang an ambulance faster than I normally would have, also was alone so reliant on myself to deal with my breathing (no one to ring 999 when I couldn't talk) usual 10 puffs hadn't helped so trying to be good after a couple of self-discharges I went in. Had 4 back to back nebs, and then registrar came in and said I only had a very slight wheeze, certainly not a severe attack like the last time he'd seen me so I could go home, had a bit of a cry due to being frustrated that he was so dismissive (surely 4 nebs isn't an everyday requirement) when the nurse asked what was wrong I said I was just annoyed that I was in hospital so much and she just said ""we'll you didn't need to be here now!!!"" At the time I just accepted it but afterwards was really cross! Drives me mad when people are so ignorant about it!
Anyway, is the spiriva inhaler a bit like atrovent? A doc mentioned he was surprised I want on summit like atrovent but never actually started me on it! Sigh! In other people's experiences are they likely to tr me on different steroid inhalers/ long acting relievers given that what I'm on clearly isn't working or will they just go to the 'stronger' drugs first? Also, should I talk to my GP or consultant about pain management? I'm finding I'm struggling a lot more while my asthma is bad all my ribcage, stomach, neck, back and jaw absolutely kill for days after a severe attack! I normally get a lot of discomfort when I'm ill but can manage with paracetamol but after attacks it barely takes the edge off (had one idiot suggest ibuprofen as the pain was muscular lol!) does anyone find when there asthma is bad the strong need to sigh, or yawn, or kind of arch their back? I just feel like my lungs are too small and not being filled up! It's really weird, and whenever I get that feeling I feel all fidgety and odd!?! Just my body being weird or does anyone have an explanation??? thanks for all the replys I LOVE reading other people's rants and feeling less alone!
Re: sighing yawning etc. This is known as air hunger and is a sign of difficulty breathing. I get this quite a lot along with the feeling that my lungs arent big enough or wont fill up properly. This is the same i think as having a tight chest so also a symptom of asthma.
Rose xx
I absolutely get the air hunger yawning etc, I can literally feel my lungs trying to get air all.the way down.
The spiriva handihaler is a med that is usually.for copd but is good for me as I felt for a long time.that the bottom third of my lungs weren't working properly and able to get oxygen whereas with the spiriva I get air all the way doen again (hope that makes sense).
I wouldn't worry about the silly comments from hossie staff etc, we've all got corkers that have been said to us at one time or another. My personal favorite was from a junior Dr who told me he didn't think I had asthma.and should throw all my meds away....... Erm I won't follow that advice if that's ok with you?! Lol
X
ABG's are horrid arent they - especially if you get a new SHO who isnt used to doing them... ARGH! At Papworth they measure blood gases by getting it from your earlobe. Its MUCH less painful. Not sure if they have the appropriate equipment to do this in A&E or if its only in specialist places, but thought I would mention it
yeah - i have really tiny earlobes so they have to dig about for ages to get enough blood, whenever they do it on the ward they get it from my ears but are rarely willing to try in A&E i much prefer them, ABGs are awful! i once had someone spend ages and EVENTUALLY got a sample, which turned out to be from a vein in my wrist anyway!!!
i deffo understand what you mean about not getting air all the way into your lungs, i hate that sensation, its like suffocating. and i get that feeling with no wheeze whatsoever! i much prefer attacks when i really wheeze, i have so much sympathy for asthmatics who never wheeze, i dont suppose anyone has any particular information (web links etc) that talk about non-wheezing asthma, i'd like to have something to refference when i make a complaint about someone who was very very rude about me in a discharge summary (basically said i was trying to get more meds than i needed because i asked about different options for my treatment, and that i was using nebs when i didnt need them, none of which was mentioned to me at any point and noone actually listened to my chest at all during the last 3 days of my admission!!! they also incorrectly claimed to have started me on meds that i had been on for about a month before admission - i wouldnt care but as a young person i find that people really try to pin non-complaince on me and i dont need a letter like that on my file)
so is air hunger just mean i'm not getting enough actual 'air movement' or is it a sign that my blood gasses are going off? never heard of this before, glad its not just me
Angelica: what gave the junior doc that impression? that's mental!!! i'm so glad that its not just me, it makes me feel like such a fraud - if asthmatics that are more severe (i think) get treated like that then it really can't be just me! thanks guys!
in reply to
yeah - i have really tiny earlobes so they have to dig about for ages to get enough blood, whenever they do it on the ward they get it from my ears but are rarely willing to try in A&E i much prefer them, ABGs are awful! i once had someone spend ages and EVENTUALLY got a sample, which turned out to be from a vein in my wrist anyway!!!
bummer, I thought that might be the case about A&E. Perhaps they should all have to do ABG's on each other, it may change their mind - or improve their skills LOL!
is air hunger just mean i'm not getting enough actual 'air movement' or is it a sign that my blood gasses are going off? never heard of this before, glad its not just me
Sometimes you may feel as if you need to take a deep breath or sigh to get enough air. This is called air hunger. Its a description of what you are feeling. The respiratory physio at Papworth taught me diaphragmatic breathing which has helped my air hunger (I used to have it almost all the time), now my breathing is much improved. Interestingly the Buteyko breathing method has been proven to improve breathing in people with asthma, so I wonder if this also improves symptoms of air hunger.. its a horrid feeling, like you cant fill your lungs up. Its nothing to do with your blood gases Im told. Makes sense otherwise I would have been a permanent hospital resident LOL.
Lynda
Soph - do you have a doctor who is supervising your asthma care? One thing that might help you out when you go to A&E is to have a letter from your doctor that summarizes your case and explains why you'e asthma isn't yet under control.
I found that helped a lot and shifted the interaction from 'what, you again?' to 'OK. I'm here to help you through a rough patch until you can see your GP'.
Even for people like me in their 40's A&E people tend to assume that if you are spilling your asthma guts all over the place then you must not be taking care of your asthma or else your GP is falling down on the job. When you are young and people already presume (yes, not fair) that you are irresponsible, then that suspicion only gets worse.
Hi Soph
Yes another co2 guzzler! i always have high 02 levels during an attack and the nursing staff don't believe me and my heart rate is skyhigh. I just wish the doctors and nurses will listen to patients. You know your body more than they do. The might think they know the clinical side but every one is different and no one seems to grasp that. Like you i am sick to death of them saying are you sure you are not panicking etc, well... yes i might be abit but that is only because my asthma symptoms started and was a little upset i could not get my breath then natural thing happens you panic - who woulden't.
Sorry for the sort of rant but i am right behind you on this one just get well soon
I have no idea what made him think that! I'd been treated in resus (which is the norm for me) then moved to A&E for observation before they decided whether to discharge me or admit me so he had only seen me once my attack was mostly over (and after lots of meds)!!
One word, NUMPTY!!
yeah - i sometimes find that doctors don't seem to expect all the medication they give me to actually work. my asthma is fairly 'on' or 'off' so when they see me as i recover there is only an hour or two where i have a 'slightly wheezy' chest before i go to completely clear again - in my opinion this just shows that the attack is over. i have a VERY pronounced wheeze when i have a severe attack, my heart rate goes to about 150 usually (its funny, i barely count anything under 120 as tachy at all, its weird when people who dont know me see my heart rate and go all panicky!) me resp rate goes up, along with my co2 levels and yet they seem to think that the back to back nebs, steriods and magnesium they have given me to do nothing! i asked a doctor in A&E about this, after a comment from my consultant and she just looked at me funny and said ""i'm a good doctor, i stop your asthma attack - dont let them take any credit away from me!"" lol! cheered me up and reinforced that i am doing the right thing when i ring 999!
had an appointment with a new consultant at a new hospital today. ordered a whole battery of tests and took a load of my blood. had a weird breathing test done, i think it was hydrogen/helium or something like that. i know it was looking for inflammation and i had VERY VERY slighly elevated levels, only just within the second 'level' does anyone know what this means??? i always worry people will think im a fraud unless my test results are awful! stupid doctors dont massivly help. i with there was some kind of test that showed how rubbishy my lungs can be! sigh!
in reply to
i always worry people will think im a fraud unless my test results are awful! stupid doctors dont massivly help. i with there was some kind of test that showed how rubbishy my lungs can be! sigh!
I agree, there must be a test that catches naughty lungs out, mine are always on best behaviour when they're being tested or have a stethoscope waved anywhere near them!
in reply to
i always worry people will think im a fraud unless my test results are awful! stupid doctors dont massivly help. i with there was some kind of test that showed how rubbishy my lungs can be! sigh!
I agree, there must be a test that catches naughty lungs out, mine are always on best behaviour when they're being tested or have a stethoscope waved anywhere near them!
hehe mine too! Have always wondered how they seem to know when in the presence of a doctor or LF testing machines. I seem to have a habit of starting an infection which affects my asthma the day after appointments (cons or GP for something else). Which is very annoying, not to mention inconvenient - if I were there already hacking away it would save me a trip. But completely agree - I've had a lot of normal tests and the usual 'well this all looks fine, are you stressed?' thing grr.
Soph, hoping you can get the reflux followed up. And to you and Lynda: thanks for discussing it as it's possible I may need to think about this too.
hi Soph, are you sure it wasnt a nitric oxide test? That tests for inflammation in your lungs. Basically healthy lungs absorb the nitric oxide you breathe in, unhealthy lungs don't. You have to breathe in the air from the machine and then blow it out (if its the blown one) and wait for the reading. Or they do a nasal nitric oxide test.
Lynda
nitric oxide!! thats what it was and cool, interesting to hear how it works. i was really good at it apparently, did it first time i was weirdly proud! then they took 5 bottles of my blood (my veins were NOT in the mood and it took about ten mins, drip drip dripping through) to test all my IGEs and stuff like that! it seems like MOST of the tests they do are ruling stuff out like aspergillus and bronchiastasis and stuff, they dont seem to do many to rule asthma IN! its weird! if i had normalish nitric oxide test results does that make certain types of asthma more/less likely (eg allergic asthma etc)
when I was in hospital before christmas they re did my nitric oxide and I came out normal. I was VERY frustrated at this, because my lungs have been appalling. But the doctor was explaining how different inflammatory cells are involved in inflammation and its of course not as simple as a=b... It was complicated and I was in a bit of a pickle so I cant remember exactly what she explained to me.
I was crap at the test, either blowing too hard or too slow! lol
Its GOOD that they are checking out all that other stuff - they should be! Being asthmatic doesnt rule you out from getting other things which could be muddying the waters. I am regularly tested for things like aspergillus. They are redoing my CT to recheck for bronchiectasis and other things, and also doing a bronchoscopy to take biopsies and have a visual nosey around.
Have you had a ph oesophageal monitoring test for reflux...? Reflux totally wreaked havoc with my lungs, it wasnt until I went to Papworth that this was tested for, and radically changed my management.
i havent had the ph test thing, but i do want it as i know i was VERY VERY refluxy when i was little and do find that i'm symptomatic when ive had a big meal (especially if i go to bed soon afterwards) and in fact a lot of my admissions end up being late evening because of this! they did ask me a few 'does this patient have reflux' type questions, i dont really get any of the symptoms but i mentioned a few times that i though reflux was a possibility. dont know if they took what i was saying on board, i'll mention it at the next appointment if not!
and i know its good theyre checking the other stuff, its just so annoying there isnt a simple test they can do which says 'this person has asthma, its triggered by x, y and z and a, b and c will make them better during an attack' if someone could invent this test they'd be my new best friend! it is annoying however as i've just had a load of these tests done but i'm home from uni and the consultant here wants me to be treated here, and my consultant at uni wants to refer me to a third place. its all getting very complicated and i keep trying to explain to them that its getting silly but they just carry on! sigh!
nurse furby: what do they do differently when its triggered by reflux? do they stop any of the asthma treatments or just increase reflux meds?
argh Soph this drives me nuts.... so you have a history of reflux, uncontrolled asthma, and they have asked you about it, but not bothered to actually test you!? Let me tell you what Papworth (biggest heart and lung hospital in UK) said to me: something like 80% of their respiratory referrals have untreated and previously undiagnosed reflux. Of this 80% OVER HALF have no symptoms! (like me).
Reflux has completely wreaked havoc with my lungs. I am now on high dose omeprazole (40mg twice daily) and 20mg of domperidone three times daily. I sleep elevated at 45degrees as advised by Papworth. Anything less than this results in aspiration pneumonia constantly. If you think that isnt you, bear in mind that aspiration pneumonia doesnt simply mean classic pneumonia, it means constant inflammation in your lungs from stomach contents entering your lungs when you are sleeping flat. After a couple of years of sleeping (badly) on loads of pillows with a frame under the mattress which my hubby made, we are getting an electric adjustable bed delivered next week. I also have a travel mattress elevator for if I sleep elsewhere. One night of sleeping less than 45 degrees is enough to have me coughing and wheezing and breathless in the morning.
I would beg for them to do the test. Its one of the first things Papworth consider..
Lynda
clearly this is just evidence that lungs have eyes and the ability to read appointment letters so they can time symptoms inconviniently!
Also had a thought, the nurse yesterday said that i have normal levels of inflammation in my lungs, and the doctor used this to suggest it might not be allergic asthma and so reduce my pred, but surely being on a high dose of inhaled steroids, as well as 30mg of pred wouldnt th leverls on inflammation be low??? and in fact, i was just above normal so surely this is evidence that my lungs might have been very inflamed without the meds???
reflux-wise i will have a think about where i want the test to be done (like i said its all getting a bit complicated as where i'm being treated) and i dont want to have to do the test more than once lol!
thanks for all the help guys. glad i got a whole load of tests done yesterday, but just want to hurry up and get answers!
in reply to
clearly this is just evidence that lungs have eyes and the ability to read appointment letters so they can time symptoms inconviniently!
LOL
They also have ears it seems - I swear mine were listening back to the dr once and when he said he couldn't hear any obvious infection sounds they spent the next week taking that as a challenge!
There was also the time I was up most of the night with lungs being annoying, couldn't lie down to sleep and when I went to GP at 3pm they were behaving themselves (then promptly started bronchitis later that day). (I'd rung OOH at 4am but her only suggestion was come to the OOH place which was halfway across town and I was coughing so much when I moved around).
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was having a horrible moment when I had been exhausted when an attack started so rang an ambulance faster than I normally would have, also was alone so reliant on myself to deal with my breathing (no one to ring 999 when I couldn't talk) usual 10 puffs hadn't helped so trying to be good after a couple of self-discharges I went in. Had 4 back to back nebs, and then registrar came in and said I only had a very slight wheeze, certainly not a severe attack like the last time he'd seen me so I could go home, had a bit of a cry due to being frustrated that he was so dismissive (surely 4 nebs isn't an everyday requirement) when the nurse asked what was wrong I said I was just annoyed that I was in hospital so much and she just said ""we'll you didn't need to be here now!!!"" At the time I just accepted it but afterwards was really cross! Drives me mad when people are so ignorant about it!
i much prefer them, ABGs are awful! i once had someone spend ages and EVENTUALLY got a sample, which turned out to be from a vein in my wrist anyway!!!
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