Taking so long to recover

[Js706]

After being on hdu last week with my asthma I’m now starting to realise I might have rushed myself out a bit quickly! (Hindsight is 20-20 I guess!)

It’s annoying because I’m used to severe exacerbations and admissions and tend to pick up fairly quickly once I get out of hospital and on top of things. But this time I’ve been out since last Friday and my peak flow is still sat at 210-240 (440 normal). I’m waking a lot throughout the night coughing, and while my chest is fairly clear at rest I’m getting a wheeze when I start to do any sort of activity - even showering!

I’m still on 40mg of prednisolone and will be starting to reduce it on Thursday. So I’m at a bit of a loss as to what to do, as while my general function is pretty poor, I don’t really feel “acute” enough to head back in (nor do I want to!).

Any ideas for helping everything to pick up? Or to fill the time while I wait for everything to start working again!

[EmmaF91 Community Ambassador]

Hi sorry to hear you’re feeling so rubbish!

I’d try ringing the hospital asthma team or your consultant. If your still around 50% PF post hosp and on 40mg pred you possibly do need something more... I’d definitely cal them or at least you GP before you try and taper off the roids!

From my experience when I’ve been in a similar situation I’ve been told to head in to either a&e or amu outpatients 😒. It’s no fun but usually I get to go home afterwards 😅😜. It does sound that you may have been granted freedom a little too early 😔

Hope you start to feel better soon, and obviously if you start to feel worse don’t faff around just head straight in! Docs prefer to see us sooner rather than later - resus requires more paperwork than just a neb would 😉

Thinking of you xxx

[Js706 in reply to EmmaF91]

Thanks for your reply! Yeah I think I’ll give the severe asthma nurses at my hospital a ring and see if there’s any way I can up some of my regular meds too.

I think part of the issue was my fault! I felt so great while I was on the IV aminophylline that I thought I was recovering pretty quickly! And the bad news about further treatment meant I wanted to get home and mope a bit!!

Fingers crossed I can avoid anything major x

[EmmaF91 Community Ambassador in reply to Js706]

Yes hospital meds can make us feel sky high and good enough to leave, until we come off them! I’m surprised they did let you go as quickly as they did, especially as the ‘rule’ technically is you can’t leave until you’re stable, at least 75% PF and at least 24 hrs post additional meds/intervention (ie no extra nebs that what you usually would do at home in normal meds regime etc).

Aminophyllines a wonder drug (when it’s therapeutic!), and my lifeline to stabilise was theophylline (a similar drug in tablet form). I hope to be able to come off it soon (as I’m now on Xolair injections and it’s not a drug docs really like us to stay on) but it’s worked wonders for me!

I completely understand the drive to leave asap, especially if you’ve had some bad news/news you didn’t want to hear whilst you were in. Poor sleep, depressing environment, no privacy to breakdown if you want too 😔. I’ve managed to wrangle daily outpatient treatment for a week before as I didn’t want to stay in and my local knows me really well and trusts me to be sensible!

I hope they sort you out soon, and that they don’t admit you (or at least that you’re not in for too long if you do!) Good luck with the phone call x

[Js706 in reply to EmmaF91]

I managed to hit my 75% after 24 hours off everything. It just dropped right back down again as soon as I got home and started trying to do things 😔

I know! I also take theophylline regularly and while I’m still not particularly under control it did make a huge difference! 😁

Thank you x

[ChrissieMons]

Maybe 'trying to do things' is the key here!

[Js706 in reply to ChrissieMons]

Very true! But those things are only showering and walking up the stairs to my bedroom!!

[Js706]

Managed to get hold of the severe asthma nurses and they’ve said I need to at least head to an urgent care centre (as staying with parents) to get checked over 🙄😕

[EmmaF91 Community Ambassador in reply to Js706]

Sorry to hear this... hope things are better for you now and that you’re getting the help you need xxx

[Js706 in reply to EmmaF91]

Being admitted...again! They’re planning to get their resp team to ring mine in Leicester tomorrow to see if they can make any changes to my regular meds

Thank you x

[EmmaF91 Community Ambassador in reply to Js706]

Hope you start to feel better soon, and get granted freedom with no parole 😂. On a serious note I hope that they fix you up quickly and enough that you won’t have to return again! Hope you manage to get some sleep xxx

[EmmaF91 Community Ambassador]

How are you doing? Hope you’re starting to feel better and that you are hearing good things about how long you’ll be in for xxx

[Js706 in reply to EmmaF91]

They did let me out today - even with Sats of 94 and raised white cells on my bloods.

But they don’t really know my asthma and didn’t bother to ring my normal team. So as I felt ok after some nebs I thought I may as well head home and I can get seen when I’m back in Leicester this weekend if I still don’t pick up! X

[EmmaF91 Community Ambassador in reply to Js706]

😕 - glad you’re out even if you’re still feeling dodgy. Finger crossed for you that it holds and you don’t have to head back in when you get back home xxx

[Js706 in reply to EmmaF91]

Thank you! Hopefully I just needed a few nebs and will pick up over the weekend x