Think this is gonna be a long one... ... - Asthma UK communi...

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Think this is gonna be a long one... (cause it has been so far... 😅😴)

EmmaF91
EmmaF91
54 Replies

First up, I am an idiot 😅🙈. Monday, I decided that it was a good idea to sprint (whilst pulling a suitcase) the length of 8 train carriages and up/over/down a bridge (missed the train I was chasing by about 10 secs anyway) in the cold/damp weather... this situation was not my fault I hasten to add (thanks greater Anglia... good job 😒) but boy did my lungs shout at me for it, and they are yet to forgive me!

Since that lovely gentle jog I was needing 2 nebs (my limit) plus about 30 vent a day (and upped pred to 35 which I was not happy with 😅). Contacted my ANs Tuesday (who didn’t get back to me) then again Wednesday asking for a return call as was starting to loose my maintenance (nebs were only lasting 3hrs), and had started coughing up gunk. Spoke to an AN who told me to see GP and get them to admit me straight to AMU, as A&E super busy. Unfortunately the effort of getting to the GP dropped my PF down to 30% (which I treated with my 3rd neb in the waiting room) but GP wasn’t happy to follow the AMU plan and called an ambo.

By 5 I’m in the ambo just Nebbing and trying to explain I’ll need more than just nebs. But cause I’d reversed into the red/yellow boundary they couldn’t justify giving me hydro. Despite needing nebs basically the whole 30-40 min journey to stay around 60% (my first blue lights with the nee-naws which I feel was not needed). Then I was waiting outside in ambo on 60-90min nebs til 8.30 when they had a bed for me in majors. Still more nebs and 100 hydro which tissued half way (🤕 ouch!!!) then I was moved to the chairs waiting for medic review for admission (chairs from about 10pm-ish). Basically 2 hourly nebs through the night, on the chairs (so no sleep, having got up at 6am wed, and also no dinner as teatime was spent in ambo), stretched it to 4hrly by after my 4am, and FINALLY saw a medic at 9.30am who agreed to admission, decided to up pred to 40 and prescribe 2hrly salb nebs and 4hrly atrovent, but didn’t think I needed to escalate to anything else. 10am I managed to get some breakfast (FOOD!!!) then transferred to AMU by 10.30am.

Only on AMU for a few hours then transfer up to a surgical ward (side room 🎉🎉), and didn’t get a resp review until 6.30pm (still having not slept so 36hrs awake, on 40 pred so very teary and defo not thinking straight). Chest clear so nebs put to PRN and ‘maybe discharge tomorrow’. It took me a while to work out I basically had had a b2b neb cause my 1600 neb was an hour late then 1800 was on time. Did 4hrly nebs overnight and swapped to 2hrly vent (4 puffs) at 6am. The nurses up on surgical not happy cause start sounding terrible on exertion at the 2hr mark (and sound bad sitting at the 4hr mark).

Just seen my fav AN (yay!!!) who says the resp ward/docs aren’t happy I’m on surgical esp as I’m on level 4 and the lower severity resp ward is on level 1. She also heard the issue as had popped to smiths for shower gel. FENO up at 54 despite the pred and benra (my last one was 12... 2 days post last discharge). She wants me back on regular nebs but until a doc tells me I’m going to resist cause the regular vent is doing the job atm...

So I’m currently waiting on a bed down on resp and frustrated as I need an escalation but cause came in ‘earlier’ than I usually would (cause still show good reversibility but not great maintenance) so getting more treatment is going to be difficult (cause on the red/yellow border so not acute enough...). Am hoping I’ll see my con cause I know she’ll understand and give me what I suspect I need (a mag bag). I’m not acute enough for escalation of treatment no quibble, but also not stable enough to be discharge, so limboing on salb which is frustrating 😅. If I was at home I would not go to hosp at this level, but would have about a week before I deemed myself ‘bad enough’ (ie lost reversibility) so that I could get the meds I feel like I need...

Has anyone else had this issue? How did you get round it? So any of the severe asthmatics also feel like if the good to hosp too ‘early’ the hosp stay lengthens cause you don’t get the treatment needed without a fight? (Had I not gone Wed I probs would have been in today/tonight and got the mag bag in a&e, plus 200 hydro... but 2 days earlier so 100 hydro and nebs nebs and more nebs and I’m not bad just not good either). Also think this is my longest every wait in a&e... 14hrs actually IN majors plus a couple sat outside in ambo waiting... it was definitely a busy night for them... (at one point 115 patients and and average wait time of 5.5hrs to see a ED practitioner)

Ps apologies for the long windedness and if I’m going round in circles. Managed some sleep but interrupted... also blaming the pred!! 😅😂

Update:

Just been reviewed by resp. Not my con. ‘See how you go today and maybe release tomorrow’... he did not seem to understand that to stop me bouncing I need more treatment 🤦‍♀️. Oh well. I know I’m not that bad atm, and realistically wouldn’t come to hosp at this level. But suspect it’ll be a slow spiral if I am released like this until I am bad enough for escalated treatment....

54 Replies
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CDPO16

Gosh Emma, yet another dreadful experience. The disagreement I had with one of my GPs this week pales into total insignificance compared to your problems. I hope you are soon able to see your cosultant, get the treatment you need plus some food and sleep before finally managing to get back home.

Love and hugs Carole xx

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EmmaF91
EmmaF91
in reply to CDPO16

Ha! The GP I saw was like ‘once you’re discharged see me. We’ll come up with a plan for your asthma’ 😅😂😂. Hope the issues weren’t too bad with your doc!

Just been reviewed by resp. Not my doc. ‘See how you go today and maybe release tomorrow’... he did not seem to understand that to stop me bouncing I need more treatment 🤦‍♀️. Oh well. I know I’m not that bad atm, and realistically wouldn’t come to hosp at this level. But suspect it’ll be a slow spiral if I am released like this until I am bad enough for escalated treatment.... he also asked ‘have you tried montelukast?’.... erm 😅😂

Thank you and hope you’re not too bad (barring GP fight 😉)

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CDPO16
CDPO16
in reply to EmmaF91

Not a good week but pretty good compared to yours. Fingers crossed that someone listens to you soon. Hate to think of you being discharged only to go downhill again xx

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EmmaF91
EmmaF91
in reply to CDPO16

Ugh. I’m sorry to hear that. And it’s not a competition 😉. Compared to my friend I have absolutely nothing to complain about... and dw if I get discharged it’ll either be a slow recovery or a slow decline, it’s just frustrating when I know getting 1 drug now will make me good and sort me out here and now! Xx

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CDPO16
CDPO16
in reply to EmmaF91

I know it's not a competition, my friend, I just wish you well asap xx.

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EmmaF91
EmmaF91
in reply to CDPO16

My thanks. And I wish you the same. Hope whatever’s gone down gets sorted for you soon too!! Xx

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Junglechicken

So sorry about what’s going on for you at the moment. You are such a lovely person and support everyone! Keep warm and take care x

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EmmaF91

Thank you. I feel like this is payback for boasting about my lack of admissions since starting benra... cause this is 2 in a month now 😒😂😅. Look after yourself xx

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Junglechicken

Oh no don’t think like that. None of this is your fault what ever you think you have done or not done. It’s the fault of this horrendous condition called asthma that gets you down and then just continues kicking. It lets you get up for a little while then knocks you down again. Sending positive thoughts and vibes your way x

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EmmaF91

Nah... I just tend to think I tempt fate.... like I’m pretty sure had I not told my spec con last week that I’m not gonna have another admission before I see him again next year I probs would have recovered like I was expecting from the train run this time (esp as had to do a train run the day of seeing con and it resolved with salb).

Defo gonna be stealing the positive vibes tho! The pred has run off with all of mine 😅 (tho luckily had the doc I’ve had to argue with before and he has now learnt to listen to me! 🎉 finally gonna get the mag bag I feel like will be the solution to getting out of here!)

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Wheezycat
Wheezycat
in reply to EmmaF91

But both occasions have been slightly out of the normal, as it were. One linked to a cold and one due to running round a train and station in the damp and the cold. Neither things you would do on a daily basis, even if we all have had experiences of both. In normal daily living your med has worked well. And long may that continue, once you are fully back on your feet.

I am so sorry you are having such a frustrating time. It would be good if there was an asthma action plan for doctors etc working in A&E etc, one that spells out what works for you. Maybe something to discuss with your specialist? And then hope that more local doctors are willing to follow direction. Including your GP.

When are you starting your med school lecture tour? Sooner rather than later would be good!

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EmmaF91
EmmaF91
in reply to Wheezycat

Yeah. I suppose my brain was thinking ‘well you ran for train on wed in the cold to see spec doc and it all resolved with 10 vent’... but yeah... just frustrating esp with how this admission has gone down...

Luckily saw a con today I trained up back at Easter (with the hydrocortisone argument m 😅). Was on his possible discharge list for today (despite needing a neb yesterday when dropped to 36% PF🙄)... he is writing up mag infusion no quibble!

Next time I see local con (or ANs which is in 2weeks for benra) gonna ask them for something... even if along the lines of ‘Emma has maintenance issues not reversibility. If shes not maintaining and starts telling you to escalate (after 24hrs) please listen, or contact me for advice’ cause I do know usually what I need (and usually want to try the minimalist approach but once I can tell it’s not working I really don’t like having to wait around til someone listens...). My con is fab. It’s the others really (con has done some training tho...). GP is usually fine (cause my named GP will just give me what I ask for), but we’d was an emergency appt with someone I’ve never seen before who freaked... hopefully we can get a plan together (and then NEVER have to use it!!!)

I’m waiting to hear from con... I really do hope it happens cause I’m dead keen!

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Wheezycat
Wheezycat
in reply to EmmaF91

Yes, that’s it, all of it! But that thing if pushing ourselves beyond what is sensible, it is what we do though, isn’t it? After all, do we really want to admit we can’t do things? I am something like near three times your age, but it still applies.

As you said it is not a competition, and my asthma (which is also an inherited thing, with traumatic events in the family history, which doesn’t help) is moderate not severe, but there are things I do struggle with regularly, especially this time of year, things that were straight forward not long ago. And so I switch between being perhaps overly careful and in full denial. It is a seesaw asthma management style. And it is due to me just being a pretty normal human! ............and then, when we don’t get away with it we have to pay for it...........oh, damn! But worth counting all those days when it is good enough, even if not perfect.

Hope things are improving for your friend. Poor girl, what a thing to have to deal with at a young age.

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EmmaF91
EmmaF91
in reply to Wheezycat

Where’s the excitement in life if we don’t take a few risks 😉😅. (Ps suspect you’re closer to double my age now not triple 😉)

Have posted an update about K on ‘her’ post...

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Blue-Breeze

Take care and hope you feel better soon, on the correct treatment for you.

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EmmaF91
EmmaF91
in reply to Blue-Breeze

Thank you. Finally had a doc whose listened to me today. Getting the mag bag that I usually get in a&e but didn’t cause ‘responding to nebs’ (lasting about 2hrs if that this before dropping to red 🙄). Very glad it was a doc I ‘trained up’ around Easter with the hydrocortisone fiasco cause I do not have the mood/energy/inclination to to fight today. But he has prescribed no quibble! Hoping it’ll get me maintaining so I can leave tomorrow 🤞🏻🤞🏻

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Echoblue

Oh Emma, sorry to hear that. Your “Mag bag” comment did tickle me! Never ceases to amaze me the hoops we have to jump and how you can see what path this will take. Whatever happened to “the expert patient”?! with the complexity of a chronic condition why can’t they listen to us? 🤷🏼‍♀️😳🤔🤦🏼‍♀️ take care Pam x

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EmmaF91
EmmaF91
in reply to Echoblue

My mag bag is on its way (soonish I hope!) 😅😂. Saw the doc I argued with at Easter about hydro... he remembered I am an expert patient and has written it up no quibbles (esp as PF chart shows what happens when I back of salb ↘️ 😅). Glad no fight was needed cause no energy fr that today...

It was a good pick me up tho after catering forget to give me breakfast (or a morning drink) so food was an hour later than the the patient in opposite side room (and yes the lack of food and being forgotten made me 😭... that’s defo the pred +/- the situation getting to me 😅)

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Echoblue
Echoblue
in reply to EmmaF91

Awww Emma, it so shouldn’t be like that! Hope Mag bag been and done it’s job 🤞🏻🤞🏻 take care and speedy recovery x

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EmmaF91
EmmaF91
in reply to Echoblue

Thanks. Still waiting on the mag bag... hoping it’ll come with the lunchtime med round (if it doesn’t I’m not gonna be impressed 😒😅)

Hope you’re well x

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Echoblue
Echoblue
in reply to EmmaF91

Never ceases to amaze me!! We know Magnesium sulphate works so well .... and it’s cheap!! You’d think you were wanting something that would break the bank to provide 🤷🏼‍♀️🤔 x

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EmmaF91
EmmaF91
in reply to Echoblue

Ha. Nurse was not even aware that a mag bag was happening... I really hope it’s been written up (pretty sure they were doing that in the room with me...)

Hoping she’s on the case now cause what to sleep and can til it’s been started at the very least...

And yes the cost of a mag bag for a patient who is very experienced v the cost of ignoring experienced patients advice... which is more expensive do you think? 😅

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Echoblue
Echoblue
in reply to EmmaF91

Now why doesn’t that surprise me 🤷🏼‍♀️😳 ........ do they want you to get better?!!! Sleep well when you can get the chance. Am tempted to bring you some of my magnesium sulphate that I currently nebulised with and slip them in your nebuliser!! 🤔😉🙌🏻 x

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EmmaF91
EmmaF91
in reply to Echoblue

😂😂. At this rate I’ll take you up on it 😉. Never nebulised mag sulphate before and always up for trying something different 😉.

I’m either memorable or this admission is way too close to my last... had about 9 people recognise/remember me now 🙈😅😂 x

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Echoblue
Echoblue
in reply to EmmaF91

That’s awkward isn’t it when they recognise you!! Apparently nebulised Mag sulph is rare (or is that “special”! 😂😉) but has certainly helped prevent my fortnightly then weekly A&E trips! Is a bit of a fiddle as have to draw it up and mix with sterile water and the salbutamol but have it down to a fine art now. GP has been amazing at prescribing it once specialist centres requested it. Personally it works just as well as the IV without any risks, but I know it absolutely isn’t suitable for everyone and in fact even the specialist centre said their small cohort of patients that they used it on 9 years ago when I previously had it from them was even smaller now as many get benefit from the biologics. Sadly not for me so very relieved I still have that alternative at the moment.

Let me know if you need me to smuggle it in 😉x

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EmmaF91
EmmaF91
in reply to Echoblue

Ha. Doc still hasn’t written up the mag bag apparently (not impressed 😒). I had been so proud of his improvement too 😅. Any backhanders of mag will be appreciated 😉😅

You’re a unicorn 🦄😉. And I get you... anything to reduce hosp trips..! I am very thankful that I am eligible for the MABs and that the last one has worked so well!! C

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Echoblue
Echoblue
in reply to EmmaF91

On the positive (and ok, you have to dig deep for it!) you know now and hopefully someone has grabbed him by the scruff of the neck and written it up now! You couldn’t make it up! X

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EmmaF91
EmmaF91
in reply to Echoblue

Digging very deep for something positive. Cause it’s no where in/on notes so has not been ordered. And the doc who ok’d it went off duty around lunch. So now waiting for a stranger to order it. Which won’t happen. Cause ‘not acute enough to warrant it’....

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Echoblue
Echoblue
in reply to EmmaF91

I would swear if it was allowable! Absolutely ridiculous!

I have so many people who tell me I hold off too long to seek help but it is for the very reason you face! You have to be pretty much past the point of no return before they will do what is needed. If they jump in sooner with what you KNOW works for your variant of asthma, you would probably have been home by now and well on the way to recovery!! Stay safe and give the docs tomorrow verbal! You shouldn’t have to double check that what is agreed between yourself and a clinician is actually followed through. Unacceptable 😣🤬🥺 x

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EmmaF91
EmmaF91
in reply to Echoblue

Exactly. I even said that to the doc today. Next time I’m waiting til I deem admission needed. Cause that way a&e will give what’s needed (tho tbh they could have given it this time cause 2hrly nebs but ‘its reversible’ 🙄🙄). And tomorrow is Sunday so what’s the likelihood of getting anyone who’ll listen? Pretty much zilch cause bet it’s a junior who’ll stick to the script. Could go home at this level, struggle at work and just come back in a couple weeks when ‘bad enough’ again 😒. Not something I want to do (cause 3 trips in 6 weeks looks really bad for my Mab trial). Defo gonna bring out what spec con suggested ie tell them I’m on a drug trial costing x amount and if they screw it up for me NO ONE will be impressed... 😅. Or offer to go run round the hosp so he sees me bad enough so can get the drug I need to give me back my maintenance...

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Echoblue
Echoblue
in reply to EmmaF91

🤔 a few plans there Emma!

It does beggar belief! Keeping everything crossed that they see some sense before you have to do a quick cross country or obstacle course around the ward! Maybe a couple of flights of stairs may give the response required, but why should you have to?

I like your thinking of referencing the trial as that tack could be a winner “let me just take a note of your name as I shall hold you personally responsible for my withdrawal from the trial on the grounds of incompetence!” Or words to that effect! 😉🤞🏻🤞🏻 good luck Pam x

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EmmaF91
EmmaF91
in reply to Echoblue

Or maybe i should charge them for the unnecessarily missed work cause if I’d had mag wed/Thurs/yesterday (or even today) I’d probs have been fine for work Mon (Ties latest), esp as was just about able to work all last week (til admitted but would have worked if i haven’t have come to hosp) cause can’t afford not to unless I really need too. I’m self employed, can see up to 12 patients a day at £38 each (usually it’s 6-8patients at £38-£48 each)... a day off cuts a large amount off my income. And already had a week off, and a week of 1/2 days, and a day of for hosp appt and a day off for last week...(plus the added expense of about £50 JUST for travel to/from hosps)

So atm I have a) offer to really trigger myself off to get the drug (cause today has been a ‘sit in bed waiting for the drug’ day so very minimal triggers/activity), b) point them towards the ‘if you screw up my trial’ line of thought or c) ask them for compensation for the extra days missed at work due to following suggests cause told ‘will get you sorted before you get too bad’/their bad communication... cause rn this is a longer stay than other attacks I’ve had in the past which I deem worse, but were treated appropriately in a&e...

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Echoblue
Echoblue
in reply to EmmaF91

They just don’t get the impact delays have on our lives 🥺

Also, just sat around isn’t real life so you know that as soon as you get home and start to move around, how easily it can be tripped off again if it hasn’t been properly and fully brought back under control!

Use your frustration and anger to make them listen. I know it’s hard when you don’t have the energy, but it’s your only hope to try and move forward xx

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EmmaF91
EmmaF91
in reply to Echoblue

Exactly. Tomorrow I’m going back to my ‘wandering the hosp so everyone can see I can’t cope at home’ trick. And if mag not given I’m going to back off salb to 2 puffs 4hrly. Cause rn I’m doing 4puffs 2hrly so that I don’t need nebs. Yesterday when I tried for 4, 4hrly I ended up needing a neb... atm I’m getting comments when I walk the ward cause at the 2hr Mark cause they can hear my wheeze... it’s just very frustrating.

I’m hoping frustrated/angry Emma will come out to play tomorrow, not fed up, depressed, tired, CBA to deal with it Emma who’s present atm (thank you pred... you’re so helpful 🙄😒). Atm I’m liable to cry instead of being calm and forceful (which is what I feel like I need to be to make them listen to me...). Maybe I’m being too pessimistic. Maybe I’ll have a doc who will listen (or maybe I can make them call Dr P (today’s doc), Dr H (my local con) or Dr G (spec con) to make them listen...). Just very much in a gah/ugh mood. Was so happy when I thought ‘yay don’t have to fight for the mag’ this morning.... anyway. Gotta stop the pred head from taking over rn 😅 (and maybe I’ll tell them I’m dropping to 35 again cause been 5 days tomorrow of 40 and I won’t do any longer if they aren’t going to give me what I need. Cause it’s me having to deal with the side effects...)

(Having said all this I bet on me bursting into tears tomorrow, and getting nothing but a discharge stating anxiety... 😅)

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Echoblue
Echoblue
in reply to EmmaF91

You have every right to feel cheesed off, Pred head or no Pred head!! Keep the faith and the focus and maybe write down your questions/points just in case you start to crumble tomorrow and then you can just hand them over and ask them to answer 😉 x

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twinkly29

Ugh what a frustrating admission. I just wouldn't go in unless it's terrible because I feel they wouldn't do anything so I completely understand what you're saying about not being bad enough.

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EmmaF91
EmmaF91
in reply to twinkly29

VERY frustrating... luckily finally been listened too. Told this doc (one who I trained up around Easter 😉) next time I’m doing my own thing and not listening to ANs/coming in early unless I have a letter from con saying to escalate treatment if not maintaining past 4hrs (cause that’s when I start to make waves but ‘good response to salb’ means most docs don’t listen)

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twinkly29
twinkly29
in reply to EmmaF91

Excellent plan. Hopefully your cons will do that for you - it would save everyone so much stress, mostly you and therefore you'll be better quicker! X

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Denae011

Get well soon and good luck. X

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EmmaF91
EmmaF91
in reply to Denae011

Thank you. Hoping things will be on the up now that I’ve had a doc listen and prescribe what I strongly suspect will be the solution to this issue! 🤞🏻🤞🏻

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Ghoulette

Oh Emma....what a nightmare! I truly hope you get sorted soon and receive the treatment you need. Wishing you a speedy recovery xxx

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EmmaF91
EmmaF91
in reply to Ghoulette

Thank you! Not a happy bunny but have finally been listened to today and getting my mag bag 😉. Hoping I’ll get the response I suspect I’ll get cause that means freedom should be tomorrow! X

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Echoblue

Have been thinking about you Emma - hope you are doing ok today and have managed to drag some common sense into the equation? 🤞🏻🤞🏻x

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EmmaF91
EmmaF91
in reply to Echoblue

No docs about yet (and not sure when there will be). Nurses (yet more who remember me) are understanding the frustration. But on the plus currently a slightly better mood rn which is something. Have escaped the ward to sit and chill in the community teepee 😅

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twinkly29
twinkly29
in reply to EmmaF91

Really hope you get your meds soon. You could always ask them to contact PALS. That often gets things moving!!

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EmmaF91
EmmaF91
in reply to twinkly29

Thanks - Rn I’m safe. Just limboing on the not acute enough to escalate but not safe enough to discharge line (and need the escalation to meet that criteria). It’s very frustrating! And very much doubt I’ll see anyone today... 🙄

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twinkly29

How's things? X

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EmmaF91
EmmaF91
in reply to twinkly29

Massive breakdown on another con I’d never met before (plus her reg, junior, med student, the physio and pharmacist and a nurse)... 😅

BUT I’VE HAD MY MAG!!! Seeing if it will hold so I can go home today, or I’ll have one more night just to keep an eye...

Am shattered and worn but feeling good thanks 😅. Hope you’re well x

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twinkly29
twinkly29
in reply to EmmaF91

Glad you've had the mag! I've done that many a time - sometimes it's needed sadly. The irony is that they'd free up a bed quicker if they did the right thing in the first place!!

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EmmaF91
EmmaF91
in reply to twinkly29

Had the mag and a neb. Got to green. 2hrs (and a lot of ward walking) later I was still happily in green and not noisy (pre mag got noisy if I walked, and also dropped to red zone every 2hrs even if I stayed in bed). Told them I’m 95% sure I good to go home, cause lungs still feeling good etc. Followed up with ‘safe to be at home, but not safe to get home’. So guess who’s now home (via taxi cause not eligible for hosp transport... host paid tho)... think I proved the point that all I needed was a mag bag to get my stability! 🙄😒😅. At least I can sleep in my own bed tonight 🎉🎉🎉

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twinkly29
twinkly29
in reply to EmmaF91

Well done you! Such a fight all the time, isn't it?!

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Echoblue

How’s it going Emma? 🤞🏻🤞🏻🤗 Pam x

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EmmaF91
EmmaF91
in reply to Echoblue

I am home and very much enjoyed my own bed last night 😅. Unfortunately the cold that has been threatening for a while is out in full affect now (thank you timing 🙄) but PF saying above 50% so won’t complain (esp as not needing to OD on vent to stay there!) 😅😂. I’ve just swapped out my wheezy cough for a chesty one... plus banging headache, popping ears, painful sinuses and the need for sleep is extreme 😅😂😂

Hope you’re well xx

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Echoblue
Echoblue
in reply to EmmaF91

Oooo, the gift that just keeps giving!! 🤧😷🤒 take care x

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