Deciding whether to go in or not...

[Kashwi1]

So it’s is the magic 6 weeks since my last admission and thinks are starting to go down hill again!

I and slowly getting more shirt if breath and tight but an not overly wheezy ( but that is not unusually). However I had a bit of a disagreement with my consultant last time I was in and have not seen him since so feel really apprehensive about the prospect at having to go in!!

My Pf is sitting at 60% and I am using my nebuliser every 4 hours!

Ahh sometimes I wish someone would just make the decision for me!

[Snowdrop27]

Hi Kashwi1 From what you have described you need help. My asthma isn't as bad as yours but needed a nebulizer every 4 hours isn't asthma under control but going out of control.

Pdf at 60% is not good at all when I hit 70% I'm in trouble. So it's time to get yourself to A&E. They are the people you need to access you and treat you to get you right.

As for the consultant be brave and if you met him again if your taken in be polite but firm. God bless.

[EmmaF91 Community Ambassador]

Hi

To me it sounds like you need to go in...

I’ve been in similar situations where I’ve been home nebbing but not getting PF above 70% and dropping to 30% or lower if I miss or delay a neb...

Don’t know what ‘rules’ you have for your nebuliser I know with mine I am only allowed to do 2 back to back without seeking further help. Once I’ve sought help I’m allowed to self manage on the neb at home on the understanding that if I feel worse at all or like I can’t cope anymore I’ll go back into hospital.

General rule is if I can’t get myself up to 70% and maintain there I have to go in, especially if I’ve been at 40mg pred for a while (Although TBH I often wait til I’m struggling to maintain at 50% and I’m frequently told off for it!)

I know it’s a pain to go in, especially if you feel like you have to fight to get the treatment that you need - luckily (or unluckily) I’m now known at my local hospital so I don’t have to go through this fight as often but I remember the dread of getting someone who doesn’t know me and insisting on just give me nebulisers when I’ve already taken a load at home! Just remember you know your body so fight for what you need (or get someone else to). If you know that you will drop before 4 hours is over post neb, and they neb you and try to send them home, tell them you’ll wait around to see how it holds (last time I did this I dropped badly about 30 mins before the ‘deadline’ and they finally realised what I meant and gave me more than nebs!)

Just remember it’s always better to go in early and get out quickly then wait til the last minute and get really ill and be stuck in hospital for weeks! It’s annoying hanging about in hospitals but if that’s where you need to be that’s where you need to go!

Hope you start to feel better soon! Let us know how you get on

Emma x

[Kashwi in reply to EmmaF91]

Thanks, I don't actually have any rules on how many nebs I can have before I have to seek help. I know I should probably be heading in but I am not sure I have the strength to fight with the doctors!

[EmmaF91 Community Ambassador in reply to Kashwi]

Ah... the only reason I was ‘allowed’ one was because of the rules because most docs don’t want people trying to manage at home by themselves... but then I don’t know your asthma (for me when I’m well I don’t use my neb at all... only have it for when it’s flaring up which is a lot - severe difficult atopic asthma).

Try writing everything down for them... your meds and history etc, then write down what’s been happening, how long you’ve been like it, what you’ve been doing (and when) and any PFs you’ve done... at least then you don’t have to keep repeating yourself, and they have to whole story as you’ve had time to remember it all!

Once you know you’ve got everything down then go in... if it’s your consultant you have an issue with, get the a&e treatment then see what they say... you can refuse to stay in if you don’t want to, but if you’re unstable I definitely advise staying in for at least 1 night!

If you’re on here asking for advice it’s usually a sign that you need to go in but just don’t want to admit it! X

[Snowdrop27]

You don't need to fight but present yourself and your symptoms will do the talking. Be brave I will stand in pray for you.

[Kashwi1]

Yeah I know. I am just about to head in and see. A&E staff know me pretty well as usually in every 6 week due to being a brittle asthmatic. Fingers corpses I can avoid ITU but them I never really realise how bad I am until I start to feel a bit better if that makes sense. I will let you know what they say!

[EmmaF91 Community Ambassador in reply to Kashwi1]

Good luck, I hope it works out for you and that you start to feel better soon xxx 🍀🍀🍀

[Snowdrop27]

My prayers go with you that you will be listening to and be treated for what you clinical need . I pray that you will have peace when you are there. Your stay in if you then in will be this time you will be listen to and feel confident in the care you receive.

I know how you feel when you get better you think I was proper poorly as my mum says. God bless my friend.

[Wheezycat]

This is interesting. I have only been admitted once, and that was when my peak flow measures kept dropping in spite of taking prednisolone. It probably went down to about 50%. Last time when I got poorly, with a chest infection, I dropped to about 60% of normal, and I attended the GP surgery about three times in two weeks (they generally get me in fast!). I was then told they only send people into hospital, like they did the previous time eventually, when peak flow drops to about 50%, so, thankfully, I managed to stay out. But I was certainly receiving care. But if my pf was dropping fast, and I got badly affected, I wouldn’t hesitate going to A&E outside surgery hours. So far it all seems to work for me, but I am neither a severe asthmatic nor a brittle one, though it certainly affects me and my life style.

[Kashwi1]

So went to A&E last night was triaged and sent straight to resus. The junior that came to see me was amazing and next think I know had a register and ITU coming to see me! Unfortunate for me the decision was made that I need to go to ITU despite my protest as I was beginning to tire and my ABGs were not great. Fingers crossed I will be out soon!

[EmmaF91 Community Ambassador in reply to Kashwi1]

😔 Sorry to hear this I know it’s not what you wanted. Hopefully you’ll get treated and start feel better soon so you can leave. I hope you have a better experience with your consultant this time. Sounds like it was what you need to do if they panicked that much when I saw you!

Thinking of you and wishing you a speedy recovery

Emma

[Snowdrop27 in reply to Kashwi1]

I know you didn't want to be admitted but you saw that you needed so that was the time to let the doctors look after you.

I am very pleased that you had the doctors who knew what you needed. Now is the time to lay back and work with the doctors and nurses to get you better. I hope and pray you come out when you are better and stable

If you want a chat while your in please post here. I may not be able to visit you but I can virtual visit you. Would you like some grapes?!

[Kashwi1]

Just thought I would update you guys. I am alive and now back in the land of living after having to be intubated! What a day to come round on seen as the weather is so crazy!

[Paradigm in reply to Kashwi1]

Glad you're back with us. The snow is amazing, well, it's a bit paltry here considering I'm in the red band but still.

Hope you keep well in the cold.

[Kashwi1 in reply to Paradigm]

Thanks you. I am in the red band too! Missing not being able to have a little fun in the snow!