Feeling low after time in hospital - Asthma UK communi...

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Feeling low after time in hospital

CindyID
CindyID

Evening all, I came out of hospital a week ago after 5 days in with asthma exacerbation and unidentified infection. I've got a nebuliser on loan for a few weeks and was needing fewer nebs day by day, until Sunday when they started going up again (and peak flow down).

I was supposed to have a follow up at home with a respiratory nurse after discharge as well as a consultant phone appointment a week out. Neither of these have happened.

I rang my gp yesterday as I'd got worse and not been sent home with enough nebules. He hadn't been sent any discharge paperwork so I had to fill him in on everything.

I've phoned my consultant team today and got a call booked for Friday and my GP was brilliant yesterday, so things are on track now.

I've just been really tearful and down today and I knew you guys would understand, or at least I hope you do. I'm frustrated that I've had to do all this chasing and that I'm still poorly after weeks of struggling.

Just so sick and tired of feeling pants. Thanks for listening xx

47 Replies
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EmmaF91
EmmaF91Community Ambassador

Hi

I’m sorry to hear you’re doing so poorly.

I really don’t think you should have been discharged. Not whilst still needing nebs in hosp - only those already on home nebs should be discharged on them! I have a home neb, but it’s for emergencies only (max 2 a day), and whenever docs have put me into your position (ie abusing it at home... one told me to neb every 2hrs etc til it calmed and not come back... it didn’t calm and GP eventually sent me back where I was bordering on needing intubation 🤦‍♀️) it’s dramatically worsened my control and lead to a much bigger fall out (longer recovery, tired and tears constantly, no ability to do anything etc). Did they at least tell you the dos and donts for the neb and when to go to hosp?

It sounds like you need to head back into hospital imo

If you can try giving AUK a call tomorrow and they’ll be able to work out a plan with you on what to do. The AUK helpline nurses are great and can be reached on 0300 2225800 M-F 9-5.

Please be sensible and if the nebs aren’t helping get help!

CindyID
CindyID in reply to EmmaF91

Thanks Emma, I've got cough dominant asthma, rarely wheeze and been instructed only to use nebs for the cough. If other symptoms get worse I'm to seek help as normal. I don't drop my SATs with the cough, however distressing it might be, so I guess it's not considered life threatening like wheezing asthma?

Good idea about calling AUK. I had got great help from one of the nurses the week before I was admitted. I was in and out of A&E being told it was a viral cough, despite my diagnosis and nebs really helping it. Ah well, more work to be done there. I'll ring tomorrow. Thanks xx

EmmaF91
EmmaF91Community Ambassador in reply to CindyID

Cough variant asthma is just as potentially dangerous as ‘wheezing’ asthma. Sats don’t drop in asthma until it really is life threatening and even then not necessarily (I know someone who can be tubed cause CO2 retaining by the bucket lid but the Sats were 95 so ‘normal’).

You should have been given guidance with the nebs. Like it should last 4 hrs and if it doesn’t (ie cough returns) get help. And most people have a limit on the amount they are allowed per day (some have it at a max of 6, most are like me with a lower limit). Salb nebs just mask the issue, just like ventolin does. You have used up all the nebs the hosp provided and have said you are getting worse. This suggests the hosp thought you’d be better by now and as you’re not you should be admitted.

Speak to AUK tomorrow and your GP to see if they can admit you (most GPs have this ability). You really don’t sound like you should be at home, especially without the support and follow ups you said you were meant to have...

(Sorry medics making asthmatics abuse home nebs to ‘get you out of hosp faster’ is a bug bear of mine... ones giving it with no rules of when to get more help is just dangerous...)

I agree with Emma, I don't think they should have sent you home anyway, it doesn't sound like you were anywhere near sorted for that, and especially with no clear instructions or guidance.

When I first had a nebuliser at home, it was so that I could go home sooner after an admission (it took a long time to recover and I was then picking other stuff up in hospital), and only allowed when on nebs twice a day and they knew it would be like say 1 or 2 more days of that and then I'd stop. They wouldn't have done it any earlier as it needed to be proven that the other treatments had worked and I was fit enough.

With the things deteriorating on top of that you definitely need to be back in I think.

CindyID
CindyID in reply to twinkly29

Oh, I was (am still) on 4 regular nebs a day plus prn when sent home! Seems like this has been totally mismanaged. I'd really rather be at home though and it's so hard getting them to listen when I'm "only" coughing, I'm not confident they'd even re-admit me

twinkly29
twinkly29 in reply to CindyID

Yeah that's not good

And disgraceful actually when you don't normally have nebs at home. Might be worth calling AUK to discuss it?

Edited to say sorry just seen you've done that!

It's not the best is it. I was admitted on Thursday with an exacerbation. PF was down to 180 when paramedics arrived. Finally got discharged yesterday as had trouble getting off the nebs. Trying to manage it at home but having to use quite high doses of Ventolin every three to four hours. Ok if I don't do anything but normal activities set it off. Trying desperately to avoid going back in. Resp nurses will phone in a week but I can email at any time. Full spirometry booked for 6-8 weeks time. Just been added to severe asthma register. Feeling a bit teary (probably the pred). I am sorry to hear that you have been unwell too. It really does affect quality of life and get to you after a while. My boss thinks I am better because I have been discharged. People don't really get it. Hope you feel better soon. Sometimes it is good to just know that you are not the only person struggling. Wishing you a speedy recovery.

twinkly29
twinkly29 in reply to redstar9

Oh arghhhh to your boss. If only we were discharged "better". Actually no because we'd never leave ,😅. But it is really frustrating when people don't get it.

I hope things continue to settle for you. The not being able to do anything takes me by surprise every time. You'd think we'd get used it! I'm now able to do a little bit a week post discharge but definitely had to go through the "ok ish if sitting still" stage, in case that's reassuring at all?!

redstar9
redstar9 in reply to twinkly29

Thank lovely. It helps just knowing that there are other people going through the same thing who understand. It is so debilitating. I am on the sheilded patients list and was furloughed last time but have since changed jobs. Can't afford to be off with just SSP so need to get back to work asap.

twinkly29
twinkly29 in reply to redstar9

Try not to go back too soon. I know that's really really hard in your situation 😔 but I used to do that and ended up worse long term for it. I will send quick recovery vibes to you!

redstar9
redstar9 in reply to twinkly29

Thanks lovely.

redstar9
redstar9 in reply to twinkly29

I phoned the GP today to get signed off work for another week as still needing high doses of Ventolin every 3 to 4 hours to prevent my PF from going into to the red zone of my plan. Staying out of hospital so far but definitely not well enough to do anything, let alone go back to work as a support worker.

twinkly29
twinkly29 in reply to redstar9

That sounds very sensible, while obviously rubbish in other ways. Hopefully this will mean that, by next week, you'll be a lot better.

CindyID
CindyID in reply to redstar9

Glad you're off for a bit longer. Fingers crossed you start to improve quickly now so you can feel better xx

CindyID
CindyID in reply to redstar9

How are you doing redstar9 ? Hope you're feeling a bit better xx

redstar9
redstar9 in reply to CindyID

Still not great but managing to stay out of hospital just. Dropped down pred from 40 to 30mg yesterday as per discharge plan. Still having to take Ventolin every 4hrs to manage symptoms. Added in extra mid day dose of 1 puff of Fostair 200/6 (already taking 2 am and 2 pm) so that's max I can take. Wish that recovery was a bit quicker. Have got a phone appointment with resp nurses on Thursday. Just resting and trying to get myself better. Trying not to get down about it.

CindyID
CindyID in reply to redstar9

Bless you, I'm sorry you're still not feeling great. I'm still on 6+ nebs a day, 40mg pred, 4 puffs fostair twice a day plus loads of other junk. And hardly able to do anything. Here's to us both turning the corner this weekend xx

redstar9
redstar9 in reply to CindyID

Sorry to hear that you are still struggling too. Fingers crossed we both start to recover over the weekend. It's less isolating knowing that other people are going through the same thing. Take care, rest and hopefully the pred will kick in soon. Xx

CindyID
CindyID in reply to redstar9

Yes, at least we know we're not alone xx

CindyID
CindyID in reply to redstar9

Sorry you've been through the mill too. Yes, as much as I tried to understand how it was for my severely asthmatic friend, I never appreciated the exhaustion that came along with it. Hope you feel better soon and get plenty of rest xx

It sounds as though they shouldn't really have sent you home. I wasn't allowed home until I had been off nebs for 24hrs and my PF was 75% of my best.

CindyID
CindyID in reply to redstar9

I think you might be right, and this was after I pushed for an extra day! My pf was 59% of best at the lowest when I was discharged and I think I had at least 8 nebs that day. Now I am out though, I'd rather stay out, with the right support and information

Hi CindyID. I'm really sorry you're feeling so low and I understand where you're coming from. At a time when you're so poorly you need support and treatment and trying to cope on your own and having to chase that support is the last thing you need. It's quite distressing & no doubt you feel abandoned.

Emma & Twinkly are right about you being discharged too early (& everything else). And to find that the nurse visit just didn't happen, along with the consultant phone appointment AND the hospital hasn't issued your GP with a discharge letter is a series of bad practice. An early discharge has to be supported carefully and if the hospital can't do it then it becomes an "unsafe discharge". Thank goodness for your GP. If you weren't so poorly I would recommend a complaint to hospital PALS.

When we're severely ill, we depend on things being there to treat us according to our needs and the fact that we're not in a position to wrestle for every bit of care and treatment pertinent to our recovery should be obvious to those responsible for our care.

In your case the hospital should have also given you clear instructions on what to expect in your recovery and if symptoms deteriorate to come back into hospital. I agree with Emma that a readmission to hospital was the right thing when your symptoms deteriorated. Never be afraid of seeking care, even if you call 111 first, they will support you with the decision to admit yourself to hospital or, in this case, readmission to hospital. (I've been there).

Good luck with your phone consultation on Friday and don't hold back about your symptoms and lack of a recovery plan (ask for one). 🤗

CindyID
CindyID in reply to Poobah

Thank you, abandoned is definitely the right word. I'm waiting for a call back from asthma uk to talk it through. Not sure what action I'll take, as I'd much rather stay home, but obviously with the right support and info xx

Itswonderful
Itswonderful in reply to Poobah

Exactly my thoughts on PALS. Nothing will change unless the hospital knows what they are doing wrong.

CindyID
CindyID in reply to Itswonderful

I will definitely write to them, thank you xx

Quick update: I've spoken to AUK and GP. Increased pred, anti histamines to try, I'm going to hang on till consultant call Friday unless I feel i need to be in hospital, in which case get myself in.

Still very tearful and tired but at least feel there's a bit of a plan. Thanks for all of your support xx

EmmaF91
EmmaF91Community Ambassador in reply to CindyID

Glad you managed to talk to people and get some support. Look after yourself and good luck on Friday

CindyID
CindyID in reply to EmmaF91

Thank you for your support Emma xx

Itswonderful
Itswonderful in reply to CindyID

It’s not in the least surprising that you feel tearful and exhausted. Accept that it is normal to feel like this and forgive yourself. The whole experience takes massive amounts of energy from you and the medications can make you feel really emotional. So give yourself a giant hug and allow these feelings to come and go, because that’s what all feelings do! Allow yourself time and don’t expect to feel on top of the world straight away. X

CindyID
CindyID in reply to Itswonderful

Thank you, you're right I'm expecting a lot of myself aren't I? Will endeavor to let myself off the hook xx

Needed 3 nebs in the night and another one at 7.45am that didn't help, so had to call 999. They gave me a neb on O2 that helped a lot. Plan is still to stay home and review with consultant tomorrow.

twinkly29
twinkly29 in reply to CindyID

Hope things didn't get any worse. Can't believe they gave you oxygen (ok for neb but they still gave it) and it helped and they still left you at home. If you see this before your appointment, please try and impress in consultant that none of this is ok - being sent home on so many nebs (as clearly the underlying issues not dealt with enough), it getting worse and, despite AUK and GP support and additional prednisolone, it's still getting worse.

EmmaF91
EmmaF91Community Ambassador in reply to twinkly29

Completely agree with twinkly. This is not ok, and they shouldn’t have left you at home. If O2 helped that much it either means your body is getting tired and needs more support, or it may mean your lungs are and they now aren’t exchanging gases properly...

CindyID
CindyID in reply to twinkly29

Had a better night last night but will definitely make it clear when I speak to them later xx

Call with consultant today. Went ok. She has apologised for their letting me down and will investigate.

Face to face booked for Monday.

Continue on 40mg pred until I see them

Continue as I am with nebs

The cough in itself not considered life threatening. Low PF caused by cough, also not life threatening

But

Still get help if needed or distressed

twinkly29
twinkly29 in reply to CindyID

I actually can't believe that. Coughing is a symptom of asthma, just like wheezing is for others. Nebs are masking the underlying issue (albeit giving relief while they are helping). Not actually treating it. And sorry but coughing 2ith asthma not life threatening?! Cough is one of my main symptoms and have had plenty of life threatening attacks - including involving ITU and ventilation on standby at one point.

CindyID
CindyID in reply to twinkly29

Honestly I did what I could, questioned everything. I asked what would happen if I didn't neb or call for help and kept coughing and she just said I would get exhausted and that's why I need the nebs. Asked specifically if it was life threatening and told categorically no.

This was the consultant that saw me on the ward and tried to send me home the day before I actually went. She relented when I was visibly upset. Mentioned today about how I was "anxious" when she saw me. I genuinely don't think she believes I'm in danger, but I just don't know what to believe.

Mentally and physically exhausted tbh so just trying my best to get through it. Xx

twinkly29
twinkly29 in reply to CindyID

Well done for doing all you could. Not sure what you do now. Maybe try and talk to AUK on Monday morning? Salbutamol isn't given for exhaustion! I mean it's like saying wheezing isn't life threatening. No, not itself. But the reason for it (constricted airways..... bronchospasm..... the same as any asthma symptoms) could be!

CindyID
CindyID in reply to twinkly29

ThanksReally hoping i see some improvement before Monday. Will see how my appointment goes on Monday then give AUK a call. Thank you for your kindness x

CindyID
CindyID in reply to twinkly29

Twinkly, I don't know anyone else who mostly coughs. Would you be willing to share how it presents for you day to day and during attacks? There's so little info online. Obviously no worries if not. Xx

CindyID
CindyID in reply to CindyID

Huge thanks for chatting in private. I really appreciate you taking the time to message me, and talking to someone who's experience is similar has been invaluable ❤

Had a face to face consultant appointment this morning. Really struggling today with constant cough and low peak flow (52% of best) and now have sharp pain as well - pulled chest muscle. She's started me on an additional medication (uniphyllin) plus extra saline nebs and I'm to stay on everything else I'm currently on. Got to go back in 2 weeks. Being referred to specialist in Exeter. She has also asked for 4 sputum tests on 4 separate mornings and has advised regular huff technique to try and reduce coughing. Importantly, this consultant has agreed to write out a personalised asthma treatment plan so that i can get what I need in emergencies without having to fight for it just because I rarely wheeze.

A very productive appointment overall.

Thanks again to everyone that's replied to this post, you helped me feel less alone when it all seemed quite hopeless. I've been feeling more positive over the weekend, although obviously still exhausted. A potentially long road ahead but I will get there.

Take care xx

twinkly29
twinkly29 in reply to CindyID

So glad it wasn't a complete dismissal. Glad you're being referred on and that a plan for a&e/admission is going to be done. Hopefully the Uniphyllin will help too. Word of warning with the coughing technique....it makes me cough more if I do it (and respiratory physio said if that was the case not to continue - think is often used for bringing up phlegm so is designed to make you cough). This could just be me though....am weird!

CindyID
CindyID in reply to twinkly29

Yes, definitely felt more listened to this time. Ok I'll bear that in mind and discontinue if it makes the cough worse. Thanks 🦄

twinkly29
twinkly29 in reply to CindyID

Haha yes 🦄!It might be ok - or might even help to bring up stuff which in turn reduces coughing.

CindyID
CindyID in reply to twinkly29

I'll try anything right now tbh! 😃

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