Does anyone else get a witching hour? / a bad a&e/amu experience (just need to rant πŸ˜πŸ˜…)

Hey everyone!

Currently in hospital but despite this my asthmas woken me at witching hour (for me usually between 3.30 and 4.30). When I'm really bad I often find myself waking for rescue meds between 12.30 - 1.30, as well 3.30 - 4.30, no matter how bad I'm feeling (in the past have woken at 4, both with just a v. mild cough, and with full blown red zone attack). Just wondering if anyone else gets this? I get surprised now if I wake up not at these times (say 5.30 instead!)

On the other hand (and feel free to stop reading as this is more for a de-stressing rant!!!!), had a really bad/frustrating a&e/AMU experience on Wednesday/Thursday. So I had seen my GP on mon/wed (and spoken to asthma uk wed), and been diagnosed with a moderate attack mon (started on sat had home neb mon/tues) and was having a severe attack Wednesday. Because this is almost normal for me now we came up with a plan to give me the best chance of staying out of hospital. Ended up having 3 nebs by 1PM (and upping my pred from 30 to 40) then tail off of vent (6 puffs in 2 hrs, 4 puffs in 2 hrs etc) with the whole - drop into red zone take a neb (I have one at home) and if this doesn't last go to hosp for further treatment (for hydrocortisone/mag sulphate etc).

Low and behold needed a neb at 6PM and by 8.30 was back in red/black (33%) so gave in and went to hospital (with a sheet explaining my diagnosis, medications, allergies, prev recent a&e visits and admissions etc) and quickly wrote them what had happened since the weekend when it all started, plus the meds I'd had that day so far (4 nebs and something like 26 vent). Saw a HCA for triage, and because I was red zoning (and scary BP(160/99)/HR(156) ) he stuck me straight on back to back nebs (sal + atro) without anyone listening to my chest and no doc heard my really audible wheeze. Didn't see any doc until I'd been there well over an hour and had finished the nebs. For the nebs I was put in what was in essence an overflow bay in minors, with no staff in the room and only the occasional person walking past.

Eventually saw a new JDoc who basically didn't know how to deal with me (no judgement on JDocs love you guys ☺️) PF in yellow zone and still coughing like no tomorrow. She listen to my chest (through 3 layers of clothing - 2 of them thick - it was cold but when I offered to take them off she refused!) and told me I have no wheeze (1. Wheeze is always my last to appear, first to disappear symptom 2. Genuinely don't think she would be able to hear it if it was only mild!) so she thought I might be able to go home. Told her my habit of dropping quickly before 4 hrs is up, so she spoke to her senior, then I was left for observation (still mid of my yellow zone. again I was alone in an out of the way bay with the advice to get help if I get worse πŸ™„).

2 1/2 hrs later I'm back to red zoning so have to spend 10 mins finding someone to help me, see JDoc who puts me on another neb, and spends time tracking down her senior for advice (it's now 1.30am-ish) and at 2.15 (neb finished back in mid yellow) she talks about how out of the way I am so she was gonna see if I can sit in a chair in majors. She leaves and triage HCA comes back and says they've found a bed for me (I assume majors cause still not really controlled and JDoc said that was where I was going with the plan of escaping/getting more treatment if needed). Sit in a wheelchair in a corridor for 15 mins whilst they find my notes, then they take me to AMU (I'm like so I'm being admitted then, thanks for telling me πŸ™„). Never saw anyone but the HCA and JDoc and I knew the treatment I had wouldn't last cause it's what I was already doing at home... (I can forgive the JDoc as she had only just started and she told me at least 3 times she didn't know what to do with me and was seeking further advice from SDoc)

It's now 2.45AM thurs and I'm transferred into AMU (acute medical unit) and I'm going through processing, explaining everything again, getting obs etc. They're now confused as no ECG asked for so later on they make me do postural BP (lying down, then standing - massive difference with 118/80ish laying, 156/98 standing) no explanation given for why they wanted it or what it meant (knackered by this point so didn't ask). Fine I deal with this, 4.30 by the time they finish, and leave me to sleep get 50 mins interrupted before I give up (cause first couldn't get to sleep, then ward noise then symptoms worsening) by 6.30 I'm defo in red zone, tell nurse who lets the doc know. I struggle and wait. 8AM breakfast which I can only slowly eat, now heading to black and all symptoms back nurses can hear me and report it. 8.30 PF at 30% I'm trying to relax to calm it all down (v good at not panicking/stressing too much as I've been there multiple times) and the amu consultant doc of the day comes to see me (they switch daily and can be from any hosp department). She asks me how I'm feeling, I tell her like πŸ’©, she tells me that I can't be that bad cause I'm dressed, (only clothes I had with me still in them from a&e) sitting up in chair (cause I'm really gonna lay down in a bed when I can't breathe πŸ™„) and smiling (my coping mechanisms I've had since a child).

She listens through all my layers, says no wheeze (which I can feel/hear in myself!), therefore I'm just anxious (ignores me telling her I'm black zoning, SoB, coughing, can't breathe out, tight chest etc) and stops all my nebs and lowers my pred back down to 25 (from 40 - had been on a weaning program and been at 30 and had 5 days of attacks of varying severity)! I'm now tired, frustrated and starting to stress cause she's not listening! She tells me I'm good to go home after resp nurse sees me (I'm like, like hell I am- if she had discharged me then I would have gone straight back into a&e to the day staff which knows me!).

Wait another 2/3 hrs for resp nurse (luckily get PF back into red due to natural changes in the day and me using all the tricks I know!) and get to watch the same doc cock up on a COPD patient, stopping her o2 cause she blamed the sob on her heart. This patient was on continuous 30% o2 at home. Not too surprised when she rapidly declined and the nurse started o2 again against orders to get her sats back up to 88 (they had dropped to 75%!). I see pharmacy (who know me) who are majorly surprised/slightly concerned at the plan given to me meds wise and are looking at me like they know I'm in a bad place. Finally see resp nurse who looks at what's going on and listens to what I'm telling her, and tells me that she's not happy that I'm red zoning, and that she doesn't think I'll be going home but with check with my resp consultant first. AN wants me back on nebs immediately and ups my pred back to 40! I'm finally happy cause I've been listened too! (Eventually get put back on uniphyllin too)

Back to yellow zone after neb and feeling better again (this is where I have been sitting for months - when I'm doing well I bounce in/out of green, when doing bad bounce with red). See AN again who tells me I'm staying until I can maintain green (or at least high yellow) without meds and that she'll transfer me to the resp ward (3rd time there in 5 weeks - they also know me really well!!!).

Saw the AMU doc a few times in passing before I transferred but was so angry I couldn't look at her! I can't forgive a consultant who completely ignored me and my symptoms and just told me I was anxious (no πŸ’© Sherlock when I have you as a doc!). Got the impression she didn't know/care about resp conditions and preferred cardio! Now being passive aggressive about her with the ward staff, my AN and will be when I see my consultant- if she's that anti-resp she shouldn't be on AMU!!!

Whew! If you've stuck with me til the end thanks for listening and I hope you never have to go through what I just did! If I was less confident or less aware of my condition I could have been in serious πŸ’© if I had been released! Even now with 4hrly nebs still in yellow and have only hit green once. Heart is also concerning nurses at have v high BP and pulse and getting chest pain (related to heart) when I'm having a neb.

Rant over! Thank you for your patience!!! 😁 Feel free to rant back!!! X

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17 Replies

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  • What an experience. Unforgivable.

  • If I knew her name I'd put in a formal complaint, as it is I'm hoping passive aggressive comments and complaints to the people who know me (Resp consultant, asthma nurses, resp ward staff) will get the message across. They know me as an easy going, relaxed patient that will help out if needed (say if another patient needs help and can't get attention), so hopeful hearing it from me will underline the point (copd patient hadn't been in before so could be seen as less credible if she complains!). At least turning the hosp into my second home has some benefits!!!

  • You can still place a complaint even if you don't know her name. They will be able to tell who it is from the rota and it will also be logged on the system who your consulting doctor was and therefore who the juniors were as long as you provide dates and times etc.

  • I have stayed with you to the end. It is, unfortunately quite common for us long-term Respiratory Patients to have experiences like this.

    Could I just say, I am concerned about the amount of Ventolin you are/were taking, as this is one of the reasons why your heart rate was so high.

    Did you manage to provide a sputum sample? Did they do an x-ray? Did they check your blood gases? What was your oxygen level?

    Try not to think so much about your zones. More important are your symptoms, how you feel.

    Has anyone suggested you use one on the joint steroid/ long acting bronchodilators such as Symbicort, Duo-Resprimat or others I can't remember at the moment, on the SMART regime, so you can reduce your use of Ventolin? Are you on Spiriva? Another one being prescribed for Severe Asthma/COPD patients?

    Think that is about it.

    Once I was told in hospital, next time you are bad, don't come here as we can't do anything for you, tell them to send you to Addenbrookes. I did get an apology 4 days later when I was back in.

  • Hi thanks for listening/reading my rant (just needed to get it off my chest to people who would understand πŸ˜…)!

    I know that the vent sends my HR up - I've been trying to cut down the vent - it's just the days pre a&e I was doing a lot of tail off regimes with it, which can quickly add them up, plus in the middle of the night if I'm really bad I'm more likely to 10 vent then to set up a neb (which also sends my numbers high!) then on top if I need to go anywhere I usually have to and 2 pre vents and still may need some when I get to where I'm going (happened on tues - 2 vent walk 200-300m to friends house [on flat] then needed 10 when I got there cause I couldn't talk, breathe etc).

    I'm one of the few patients that having a home neb has greatly increase the amount of help I seek from GP/hosp (cause of the rules I have over it - i.e. Dropping to red before 4hrs is up means go get help, not just vent-ing my way through the day) whereas before I would just try to keep going and keep using my blue like it was going out of fashion (think on my worst day ever I went to over 70 puffs - I was 19 had been given inhalers from age 13 but no advice or info was given to me about how much was too much, what signs to look out for in an asthma attack etc - had seen my GP after 2 weeks of severe SoB who told me I didn't have a chest infection, 2 weeks later saw another who told me I had been having an asthma attack for over a month 😳) Consequently I know I can over use my vent (cause I was initially uneducated and now it's a problem I'm trying to stop) but usually my GP knows what's happening when I'm at that stage (when I'm 'well' I'm usually at between 0-8 daily depending on what I'm doing)

    I've been told to 'listen' to my PF cause again I will just try and continue on no matter what (like on Monday when I was having a moderate attack I wasn't even seeing my GP about my asthma cause to me I was only a little bit wheezy/coughy/SoB) and because I've been so bad so often in the last 18 months I underestimated how bad I am, hence why I now focus of zone as well as symptoms to rate how bad I am cause I can just ignore how I'm feeling and comparing it to the past usual means in my head I'm not too bad so don't want to waste docs time etc. Also use the PF to keep in check how much vent I'm using and if it's lasting (again have a 'rule book' about it) so...

    I've been diagnosed official as an atopic asthmatic, but have multiple non-allergic triggers. Have also had most docs call me severe/difficult but official diagnosis is waiting on RBH appt. I'm on Fostair Nexthaler 200/6 for almost a year (2x2 daily plus MART regime) and spiriva for about 9/10 months (recently put on Handihaler from respimat cause I struggle with MDI inhalers, other than ventolin through my spacer - can't have airsalb etc for the same issue). I'm also on montelukast, uniphyllin, carbocisteine, fexofenadine, prednisolone (aiming for 10mg maintenance), flixonase (and omeprazole & adcal-d3). Shake me and I rattle! I'm waiting for an appt at RBH for Xolair trial in the hopes of improving my control and reducing how many drugs I'm on!

    I know the troubles we all face with certain docs/hospitals I just needed to rant! Usually my local hospital is great with me - must have visited a&e at least 15 times in the 18 or so months I've been bad so most of the staff know me. The day shift staff are excellent in a&e, listen and except I know my condition and that I won't come down unless I think I need something more than salbutamol that I could do at home (ie I wouldn't feel safe to go to sleep, I can't eat etc).

    Only met the a&e night shift twice (I usually do my best to wait til the morning cause I don't want to wake people up to get lifts etc, so I vent it through - I know naughty!!!) and both experiences were terrible! First time I was told I was having a panic attack based on my PF (my best PF is 2x the expected for my age so 50% is near the expected best, and 75% of expected is just above my 33% which is where I was at he ignored me telling him what me best is) and 96% sats (having OD'd on vent), really low BP (normally really high my I get to hosp) and no wheeze. Gave me 1 neb begrudgingly then made me wait for over 2 hours. Saw me slight improvement on PF so asked me if I want to go home. I said no, was told only option was majors, where they would 'put needles in me, which would hurt' etc πŸ™„, finally got to majors 3 1/2 hours after admittance, who went into melt down (all docs I had seen before) - was having a life-threatening attack, wheeze returned with further treatment etc (they told initial doc off as I was a known asthmatic patient with prev history and low BP is a red flag). This was my first AMU issue tho!

    This time had o2 sats of 96/97% at triage (having had A LOT of salbutamol to help me), 2 hrs after treatment these had dropped to 93/94%, lowest I got yesterday was 90% but managed to breathe my way back up to 91/92%. Yes for chest X-ray (never shows anything) and abg (managed to get to hosp before anything too significant happened to them again unlike last time where I put if off for too long). No sputum was asked and I wouldn't have been able to produce the goods til last night! Think they read the initial numbers and just ignored the background and symptoms.

    I hope that eventually all hospitals will train their staff to understand that patients with severe chronic conditions usually know what's going on and know what's best for their situation (my hosp does seem to have a good % of these docs luckily and I've only had a couple of bad experiences!)

    Fingers crossed these are the last bad experiences for us for a while (and you don't get told to go else where again!)

    Stay well x

    (Another long reply 😳😳😳)

  • This all sounds very similar to my last 18months or so. Meds and all. Got told today at St. George's that they are surprised I haven't needed to be ventilated in the last year!! I too have a habit of keeping on going through it! I do get told off quite a lot by family and friends for trying to keep going. I was placed on xolair in Feb of this year. It has helped but by no means solved the problems. I am currently unable to get off of the pred I try tapering it then keep having dipping peak flows and having to increase it again. I have severe atopic allergic asthma with other triggers too such as infections viruses stress tiredness exercise and cold air. Have you managed to get on a xolair trial as yet? X

  • Nope still waiting... had my initial appt at Brompton waiting for a 3/4 day stay over to review meds etc. I'm just hoping they approve the Xolair injections... fed up of being in hospital! I have a home neb now so I can try and prevent weekly nebs at The GP.

    Had a great 6-8 weeks when I got put on to uniphyllin but now I'm back in hospital and I can't work out the cause 😩. I'm now acknowledged by many docs/nurses as a 'serious' patient not a time waster as I only go in when I stuck in red/black territory (around 30-40% PF or lower) after nebs at home. Yesterday I freaked out the new triage nurse who had never met me before, I bussed in so he didn't think I would be that bad... 5 hrs in resus later I got admitted πŸ˜³πŸ˜³πŸ˜…. My docs are all surprised that I still haven't been to itu/icu/hdu yet and still haven't been intubated! Don't know whether to be proud or concerned!

    I also appear to be stuck on pred (16 days at 40-30 mg and 3 trips to hospital so far...). Glad the Xolair has helped you if only a little bit! Hope you get off the pred soon!


  • I bet you are fed up of hospital. I'm with you on that one with a visit to resus on Thursday and magnesium infusion. They wanted to keep me in but managed to escape. I too have a home neb and can be a little reliant on it. I'm a little better being on school holidays from teaching but nervous over going back in September ready to pick up every cold and Infection going. Fingers crossed they will approve xolair for you. It has stopped me reacting so violently to things such as dogs cats and pollen. I have a consultants app in two weeks to see if she thinks it is beneficial enough or if there is another option. Hope you are home soon. X

  • Thanks! Hate the 'freshers flu' season too! I coach gymnastics at the weekend and get every cold they bring in- glad I don't have to do it full time! (Osteopathy is my FT job - so lot of colds there too 😷).

    Good luck with everything!

  • If you don't mind me asking where do you coach? X

  • Beat you too it - I've PMed you!

  • Thats ok, good to talk, so to type. I take more or less same as you, but I use DuoResp instead of Fostair, start at 4 maintenance, upto 12 a day on the SMART regime, or MART, ( we know what we are talking about), so only use Ventolin when can't get to water to rinse my mouth out. I only have oral steroids when I have an infection, usually every other month. Instead, I have Budesinide nebules twice a day. Have you considered reaching for your Fostair instead of your Ventolin, as you are on that regime anyway?

  • Have tried it and it doesn't really have much effect. Spoke to asthma uk in part about the fostair MART regime and apparently it really only works and is prescribed for fostair MDI 100/6 up to 8 puffs daily because they found that the bodies most therapeutic range is 800 of the steroid. Cause I'm on the 200/6 I'm at the 800 with my normal 2x2 which they said was probs why the other 4 puffs I get in the MART have a minimal effect, so I only really take it if I feel like I need/have had a neb/10 vent. The few times I attempted just fostair, it did nothing, waited 30 mins and symptoms didn't change/got worse so ended up having vent anyway.

    Haven't tried DuoResp (is it DPI?) have gone through the symbicort inhalers but they stopped working 18 months ago another thing I can ask about if my lungs rebel again!

    Just re-attempting uniphyllin (there was a cock up on initial trial) which has helped a lot so far and did last time til I got v bad side effects but if it ends up that I can't take it I will ask about the budesinide nebules!

    Thank you for your ear (eyes 😜) and all your advice 😊. Feel free to message me if you just need to shout/rant over life... we all go through it!!! Sounds like you're doing well ATM tho so πŸ€—πŸ€žπŸ€πŸ€ x

  • I was on Fostair 4 years ago, then changed to Symbicort. For some reason people on Symbicort were swapped to DuoResp Spiromax(Budesinide/formeterol), last couple of years, I think. Dont know if everyone was asked to swap. I know it didn't suit some people, so they asked to go back to Symbicort, I believe. I have been on Uniphyllin for about 30 years now. I had to come off it for a fortnight last month because it interacts with Ciprofloxacin, and boy did I know it. What were the side effects you had to the Uniphyllin in the trial? I ask because my dose was increased, but I felt that it started to affect my heart, so we dropped it back down to 200mg twice a day.

  • Started on 1 tablet x2 daily and it was brilliant. Had my baseline blood test on day 9 (Easter happened so couldn't do day 5) then few hours later got a headache, dizzy, blurry/zooming vision, palpitations, tachycardia, tremors, got better 3 hrs later, then the next day it happened again but worse. GP took me off until baseline came back, then found out that the HCA hadn't sent it for theophylline levels just liver function test. Everyone was cross and had to stop it until I saw the consultant again for advice. Now back on it 1x daily for a week then up to 2x daily once I've got used to it.

    Hope that answers your question!

  • Sounds like how I felt when my dose was upped to 3 a day. Back down to my 2 a day and happier for it. No-one mentioned side effects, they just said my results showed room for movement.

    Thank you for that. You have put my mind at rest.

  • I was warned of the side effects by my GP cause they are the first signs of toxicity and if levels are too high can get seizures so... glad you're back at the right level for you ☺️

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