Frustrated, exhausted and very teary!... - Asthma UK communi...

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Frustrated, exhausted and very teary!😅😩

Where to begin...

Just been discharged from A&E yet again after presenting with a severe attack, heading to L-T. Told in triage that I would be see by a doctor shortly and given nebs....PF 43% at the time(after nebbing myself half to death all day already) unable to talk properly (relying on Mum to do that for me) and walking into things getting to the assessment room.

Low BP, high HR, bouncy sats and reducing PF followed by passing out(and semi passing out)...thought that would raise red flags but nope🤷🏻‍♀️

Was finally seen by a doctor 2 hours later and given a lecture on panic attacks...pretty sure I can tell the difference between feeling anxious and having an asthma attack. Also anxiety doesn’t lower PF or sats and you have to feel anxious to have an anxiety attack🤷🏻‍♀️ but whatever!!😠Anyway after initial examination he decided to check PF (maybe finally getting somewhere!!) and then give an atro neb cause already had salb nebs at home so apparently didn’t need any more🤦🏻‍♀️ got PF up to a whopping 56%🎉🙄 and then immediately got told I was fine to go home...err what?!

Spent a little while explaining the situation (not even capable of using full sentences due to SoB but that didn’t highlight any issues either cause no wheeze🙄🙄) and why I couldn’t go home until I knew PF would hold up and he begrudgingly agreed to let me wait for a bit and recheck PF. 1 hour later and a nurse comes to check on me. PF back down to 46% and that lovely cough had returned 1hr post neb😅 dr comes in, says everything is great and can be discharged...no further treatment needed. He ummed and aahed about giving steroids but I had already had my dose of pred that morning so no need as I quote ‘it is still Sunday’ (this was at 23:45) and I had had my Sunday pred🤷🏻‍♀️ what about hydro etc??

Was told this is A&E...there’s nothing much more we can do (dude, you literally gave one neb treatment!!!) etc etc etc...there’s only so much we can do to help, only so much your GP can do to help, only so much resp here can do to help and only so much the spec hosp can do to help when you see them. The rest is on you...what does that even mean??🤷🏻‍♀️🤔

Anyway, now back at home, nebbing as I write this. Been told to go back to the GP tomorrow to ‘stock up on reliever meds’ and left feeling very frustrated, confused, upset and lost knowing this will probably happen all over again tomorrow(and every night after that unless readmitted)when I hit my home neb limit and start to really struggle again. When will they admit defeat and give me something more to actually maintain responses and try to fix the issue rather than masking it with salb/atro!?!?! Ugh.

Will be calling my RN team first thing tomorrow for advice on the situation as I know it isn’t right or ok but there is nothing more I can do atm other than hope this neb props up PF and calms symptoms enough for me to catch some sleep😴🤞🏻and if not...head back into hosp and hope that I am ‘bad enough’ to be taken a little more seriously this time😩

Any advice or anything would be greatly appreciated...am I being unreasonable to be wanting treatment that will maintain and maybe keep me out of the hospital for more than a couple days?...I only go to hosp when I can no longer treat myself with what I’ve got so surely that is a sign that something more needs to be done?? There is literally no point in me being there if all they are gonna treat with is nebs as that can be done at home(just not safely-but being sent home at this level isn’t exactly safe either so I’m at a loss)🤦🏻‍♀️🤷🏻‍♀️

Anyways...rant over😳😅thank you for reading if you got this far😂🤦🏻‍♀️🙈

33 Replies
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That sounds incredibly frustrating and scary. Can you ask if you can be given a care plan to give to a&e detailing how you present and what treatment they should give?

Is there another a&E you can use should things not settle?

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I have my paperwork with all of that on but none of it is ‘official’ and I doubt my local consultant would be willing to write up a care plan as it literally took weeks of practically begging to try theophylline tablets before he finally agreed...even then it was reluctantly(‘too many *possible* side effects and they won’t help reduce admissions/keep you out of A&E etc etc etc’)and tbh he has never seen me at that level as it’s always in the mornings post neb and then have the agro of explaining that yeah, I may look ok rn but give it a couple hours or ask me to walk to the loo and it’ll be a whole different story😅

It’s almost as if it’s a constant battle to keep the bed even after being admitted and over relying on nebs/vent to get through🙄

There’s one other near me but would have to either leave earlier on first signs of attack/no improvement or hope that I don’t get too bad(as in resp failure levels)when the ambo crew arrive so they can safely transport to the other rather than my local🤷🏻‍♀️

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Totally get your frustration I have severe allergic brittle asthma and am on biologic treatment every 4 weeks and in the past have been admitted to HDU and ITU. I’ve been to A&E before and been told your having a panic attack! I’ve been told well your sats are ok (which for me my sats are not usually effected) or if you don’t have a Massive wheeze they say your fine. Or you find on a ward round they will come round prob about an hour after a neb and will be like your chest sounds nice and clear etc and I’ve been like that’s fine if I sit in the bed and don’t move. Get me to walk up to the toilet and back well that’s a diff story!! I totally feel your pain if you don’t have massive symptoms your ignored and they want to send you home ASAP but actually your more at risk of a further attack. Respiratory Nurses are your best bet or asthma nurse at GP they seem to listen and have more concerns when you contact them saying you feel unwell.

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Same here being severe and brittle with a history of ICU, although not on a biological treatment (atm anyway) as I am waiting for my first appt with the spec hosp.

Literally!! Ugh they don’t seem to understand that sats won’t drop until I am exhausted and my body is starting to give up🙄 and I don’t typically wheeze at that level but drop into silent chest where you get told ‘just take a deep breath’......dude I would if it was physically possible!!

Yup to the ward rounds, show up, see that I can talk and not overtly struggling(whilst in bed-doing absolutely nothing)so assume that everything is a-ok and I can go home....usually an hour or so post neb and it’s either ‘chest sounds ok’ or ‘mildly wheezy’.

Get me out of bed and walking to the loo...*cue the passing out* totally different story😅🤦🏻‍♀️

Have spoken to my RN team and they got in contact with my cons...no need to up pred(current maintenance dose 30mg but wasn’t stable on 40mg so don’t understand the weaning), can up home neb max to 8 a day (was originally 1, then 2, then 4, then 6-will there ever be an actual limit??) and don’t need to come into hospital until PF hits 250(40%)🤷🏻‍♀️🙄

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I feel your frustration. I hope your asthma settles very soon. It certainly puts you off going to A&E when you are treated like that, but please don’t become a statistic though and if you need to go back then please go.

The asthma nurse is a best route for advice for you, particularly if she knows you and your asthma well. Good luck x

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Thank you x

It really does put me off but defo can’t leave it too long just cause they cba to treat and are ignoring all asthma guidelines🙄😅

Haven’t been under this resp nurse team for long so they don’t know me properly yet and recently changed GP as well so none of them properly know me yet which doesn’t help the situation😬

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I do get it and am in same boat myself re silent Brittle asthma! So hard being taken seriously when you don’t tick all the “normal for asthma” boxes! I have found taking in “how I present at A&E” sheet really helpful alongside “what works for my asthma”. Ok, they don’t always read it, but gives a fighting chance and I have been taken much more seriously with it. Good luck Pam x

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It is very frustrating as they always seem to be fixated on a wheeze and sats, blaming elevated hr on the salb even when 130+🙄😅

Totally agree with you in regards to using the paperwork as an aid in A&E but as you say, they don’t always read it-but still worth trying!!🙈 xx

Meant to add-glad that you have found they listen more when you’re using the paperwork!

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I’m sorry you’ve had to go through this. I don’t understand why a&e staff are so keen to minimise asthma attacks - are they not aware of the statistics re asthma deaths?

I agree with the point made above about bringing in paperwork about how you present, if this is atypical - I think they’re a bit more likely to take it seriously, or at least understand that you do know something about your own condition. The last time I went to a&e they accused me - with no evidence - of having let my inhalers go out of date. They didn’t ask about my history or severity level (I’m on 3 inhalers and montelukast, and have to have frequent short bursts of steroids), just assumed I was a mild asthmatic who’d been negligent. Rather frustrating. Anyway, I hope you feel better soon and are able to get the help you need from the specialist service.

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Yeah, I have no idea why they do. Asthma attacks can become life threatening very fast as I’m sure you are aware.

I have my paperwork printed off and when they bother to read it, they usually comment on how useful it is-but depends on who you get and if they actually take notice of it😅

That sounds frustrating-it’s just agh!! Why can’t people take notice of us, we know our condition way better than they will...and know what works best for us etc.

Thank you, hope you are well x

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Hi how frustrating and awful for all of you who have to go through this.

It's not only in asthma though but I have chronic back pain. When they see me resting with no pain or walking a few yards they say oh it's nothing. They don't see me a few minutes later bent over double with pain hardly able to breathe. x

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Ugh, that sucks. I’m sorry you have to go through that with your back too...it’s not like we want to be in A&E...🤦🏻‍♀️😅

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No exactly and I think doctors attitudes (and how they are taught) goes a long way to explaining why the death rates from asthma are high in the UK. x

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It really is upsetting and frustrating to think about. All that needs to happen is for us to be listened to properly-we know our bodies way better than anyone else so surely it makes sense for them to at least take on board what we are saying🤷🏻‍♀️🙈

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3 deaths every day. 2/3 are caused by poor decision making/actions by medics (GPS/paras/a&e/nurses/Cons). Definitely scary stats that!

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The asthma guidelines thing is interesting. I have a care plan that's been collated from previous hospital stuff and tweaks from new consultant, but prepared by me. Therefore not official. Consultant is formalising it (and has been for months.... I've seen it so he really is, and have added my thoughts to the first draft....

Anyway because some (annoying think they know best) people decide it's criminal because it's not on official paper, it has on it to please phone consultant or resp nurses ASAP. Resp nurse the other day basically said "yes follow the plan and remember most of it is asthma guidelines" 🤣.

I honestly think some drs don't like patients having knowledge of themselves and get so fixed on being in charge that the actual reason for being there (staying alive) gets lost.

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I really hate when hospitals refuse to follow guidelines (asthma or any other tbh) with no reasoning behind it other than ‘I don’t want to follow them’... they are there for a reason!

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I know, it’s so frustrating!! Like if you’ve got a clinical reason then fair enough (like if someone didn’t get benefit from IV mag then that may as well be skipped!) but that hardly ever seems to be the case 😂

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My consultant said there's no need to adhere to the discharge guidelines rigidly, when kicking me out. I get that there is room for some clinical judgement and if I'm doing ok I'm happy not to stick to the absolute letter of them re 24 hours off nebs esp since I have my own now. However, when still struggling and being told basically 'we don't care about the guidelines OR about how you are, we're just going to apply our own random judgment based on pretty much no actual information, and assume the way you are sitting in bed is how you will be moving around'...well why even bother having them?! (And no, having home nebs is not enough when you need one just to get to the bathroom. I don't have them at home just to make me well enough for basic self care, and I'm not a 90-year-old in a nursing home).

Sorry...rant on your post over KatieJ! But I absolutely know the frustration, especially when they see you for 5 secs in bed and decide you are fine, or even see you walk to the loo and decide that's also fine to be like that, even though your arthritic granny would be faster and less SOB.

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It’s always good when the 80 year old on the ward can get around faster than you 😂

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Yep...or one fun time when everyone else in the bay would vanish for smoke breaks. I mean I didn't want a smoke break (I'm not insane) but I did want to get off the ward. I guess if I had been a smoker it would have been one way to make me quit!

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Honestly don’t think the hosp has even read the guidelines...apart from one senior doc who insisted the A&E doc admitted me(went to speak to his ‘boss’ when I questioned him on what I was meant to do to get myself better if they were just gonna send me home😅🙈🤦🏻‍♀️)

Very frustrating!! Like sure, I totally wanna be bedridden when I’m home...the con always seems to show up about <1hr post neb and assumes that they way you are then(sitting in bed)is how you will be when walking round the house without the salb...🙄😅

Ha! Couldn’t have said it better myself, esp when it comes to the home nebs and being treated like a 90yr old🙃

Maybe if they experienced being SoB etc for just a day(I bet even a couple hrs would be enough)and told to carry on as normal they would start to understand(not that I would wish feeling like this on anyone)🤔🤷🏻‍♀️

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I don't understand much about your condition but it sounds terrible and frightening. You have every right to be frustrated. They should know how to treat you so as you maintain a decent quality of life and are not in such a terrible state for days at a time in and out of A and E. Are we living in the 21st century? This sounds terrifying. You must be in a lot of distress and have done very well putting it down when you are so exhausted. No, you are right to demand treatment which will hopefully keep you from going to the hospital all the time. The problem is they see £ signs and not human beings and give cheapest drugs and treatment instead of looking on the benefits to the patient. Hope you get a result to give you some life back. Take care.

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Was just talking to Mum about it and we’re at the point where I may as well stay at home and just treat myself if they’re not gonna give more than nebs...obvs we won’t do this as it’s stupid and dangerous to not go into hosp at that level(and there’s always the possibility they will actually give the treatment that is needed🙈 can hope😂🤞🏻😅)

Yup, it’s incredibly frustrating and scary when they don’t listen as they are literally putting my life at risk by doing so...but all I can do is keep going back when things are bad and hope that they will spot a pattern and do something🤷🏻‍♀️

Thank you, you too x

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Did you manage to get in contact with your asthma nurse?

Having a clear “cut off/this is rock bottom and do not go below this line” drawn between you and asthma nurse may help in your situation?

As you know from our previous discussion, I have been in similar situations and I am now able to have a clear “my peak flow is x and I have been advised by my AN to come to A&E and not allow it to go below that. May be worth a try as it offers some clout 🤞🏻 x

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Yeah, I spoke to my resp nurse who got advice from my con.

New rules-can have up to 8 nebs a day and I have to come into hosp at PF 250(40%) but they also said that 350(56%) is a perfectly good score so if I have super good reversibility(which I usually do)they will still likely kick me out before waiting to see if it drops further(which it always does-usually within up to 2hrs-if nothing other than nebs are given)🤷🏻‍♀️😅

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A tangible number to work with makes sense and gives more credence 👍🏻. Hope that gives you a bit of confidence 🤞🏻and that helps keep the path a little smoother x

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Yeah-will be a good idea to put it down on the paperwork

Thank you🤞🏻🙈 x

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Absolutely agree, definitely have that written down on the plan 🙌🏻 x

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Sounds so frustrating and frightening! I just wanted to say I'm sending healthy vibes and hoping you're doing a bit better. Keep advocating for yourself and remember you have a big community here who has been there and empathizes deeply!!

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Private appointment with respiratory consultant if possible as that situation was mind boggling

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These written plans sound really useful. My asthma is nowhere near that bad, but where can I get something like this in case it gets worse?

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If you mean a generic asthma plan you can print them off from the AUK website and take them to get filled in by your GP/AN. If you mean an emergency form for a&e pm me and I’ll send you a template 😉

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