Having problems during the night sats are dropping to 76/77 when I wake I am gasping for breath.Have tried to increase my oxygen to keep the levels up but this made no difference last night urgh.What do you think? Any advice? Val xxx
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What are your thoughts?
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valm
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I,m sorry Val i can,t help you,cos i don,t know.just to let you know thinking of you though.I,m sure someone will be along shortly to help/advise you.xx
I can't remember val, do you use one of those devices that fit over your face to help you breathe at night (BIPAP or similar)? If not, perhaps it could help? Hope it gets sorted soon. xx
valm in reply to
No bipap was thinking along those lines thank you x
Does it help to puff or neb some ventolin Val, sometimes I wake up gasping and have a couple of puffs and then get back to sleep again,
Go back to hospital you should never have left with those numbers.
Was also wondering if it could be stopping steroids x
I agree with moovin. I s there a respiratory nurse to contact at the hospital for advice. They usually give you a contact, but unfortunately it's a weekend, always happens on a weekend
I agree with Moovin, you should not be at home with levels like that and struggling the way you are. Please get seen. x
Can you call the hospital with them knowing your recent history it is possible that you need to be re admitted until they have you out of the woods so to speak. Being monitored while awaiting results from the steroids will reduce the dangers that you are facing.
valm in reply to
Don't want to go to the hospital, the consultant and 02 nurse there Tuesday, if needed will contact them x
in reply to valm
Needs override wants when you are in heart attack oxygen saturation levels, understand your reluctance but it really has to happen and sooner than Tuesday damage is being done to your organs and it is better to choose going back while concious that arriving in a blue light taxi.
valm in reply to
My sats can be sorted through the day 02 nurse said to titrate them to keep with in levels 88 - 92 using the 02 up or down. It's just during the night feel ok at the minute will let you know what happens thanks x
hi if you are not considering a return to hospital, should realy be on way. is problem related to the position you are sleeping, i cannot sleep on my left side after a short time i struggle with sob, receades, when i turn an my back or right hand side
valm in reply to
Tried sleeping sitting up, then on my side sitting up ha ha no joy !
Certainly appears that your best move would be back to hospital until you are ready to be discharged, have they sent you out because they want the bed space not because you are well enough reading back through your blogs coming off the steroids was a problem they could see happening. The 6mg steroids would be a great help when tapering down been able to use use a half one plus the usual 5mg would help get from 10,g maintenance dose down a little lower.
Hi Val so sorry to hear your sats have still not stabilised, I think this is something you need proper guidance with, I think as its the weekend as an alternative to A&E why not ring NHS direct first and get their advice on what you should do. Please be safe.
take good care Auntymary x
here is NHS Direct website link which gives the telephone number ( manned 24/7 365 days a year) I am sure they can advise you best, just let them know you have recently been discharged from hospital:
Gordon57 in reply to
NHS Direct were supposed to be using a new 0345 4647 number by now, alongside the existing 0845 option, which can be quite expensive from mobiles and to people not on inclusive packages. I have Virgin Media at home, no call package, so it's 11.24p connection charge plus 10.22p a minute. On my Orange mobile it's 40p a minute. 
Top Tip is to go to the website and do the symptoms questionnaire, then they call you. 
For those that don't already know, there is a new national NHS number coming into use in 2013 . "NHS 111" will be manned by trained operators, you call 111 just like 999, and it will be a FREE call. It's already active in County Durham and Darlington, Nottingham City, Lincolnshire and Luton - dh.gov.uk/health/2011/08/nh...
* Some areas may be delayed by 6 months 
Anyone in West Yorkshire ? 0345 605 99 99 is your local number, on an 03 option, which is part of standard call packages.
(There are other ways to get round 0845 numbers if you're not a BT customer. I'm not going to advertise a commercial entity, but I have found that I can register with a certain site and then use their 0808 or 020 numbers and be charged, by them, only 3p a minute)
The way I read it was 6 tablets, 30mg, not a 6mg dose? Val makes more sense that way
Thought the same but :
"Thank you started steroids hope they will help tonight, was taking 15mg the hospital stopped them before I came home"
leaves me at a loss to understand the makes more sense way as the steroids in hospital would have been tapered down. Typo is the favorite when obviously not quite with it.
They did not reduce them from 15mg just stopped them! x
I am better on reducing 7 . 6 , 5 etc to 1 , sharp stopping doesn't suit me atall . xxxx Dinny xxxx
Thank you x
Normal for the hospital to taper the dose off, although 15mg isn't the ideal stopping point. Going back to a 'usual' dose of 30mg at home seems logical. When I have to take them, alongside antibiotics, it's usually 8 at a time, 40mg. I used to talk about 8 tablets, rather than 40mg, but find the medics appreciate info about the dose level more.
Grahams thoughts are also the steroids! 5mg tablets times 6 = 30mg. 02 levels ok during the day keep your fingers crossed it is the steroids and I will be ok tonight x
Have the hospital put u on any new medication that could be interfereing with your breathing? 02 is pretty dangerous, i know with steriods you can take high dose for two weeks and stop without tapering down, thats in my case. Maybe you have become steroid reliant and need a little boost long term eg 10mg each day. I take 5mg each day and although does not seem alot it has helped me be infection free in the last 6 months, i think its because i been able to breath better and get around with my 02 that i am not getting the build up of mucus that causes the infections. We all hate being in hospital but sometimes we have to give in to it to move forward, best of luck, dont go through the night struggling.
Hi Val ,
I used to have similar problem with low sats , when tested lowest was 60 odd during the night . I used to wake up thinking i had been dreaming that i was being strangled and was fighting for breath with was still there when i woke up . I mentioned it to the the resp nurse when i was in hospital , they tested me overnight (which was when they found the low sats ) and tried me on a CPAP which was better but now i am on a BIPAP and i sleep soundly nearly every night and have never had the low sats at night since . Well worth pushing for a trial , put it to them that if it solves the prioblem your health may improve , your body can't take the constant lack of sleep and low sats xxxxx , good luck , hope it helps , it certainly changed my life on that score , i wake up now feeling i have been asleep .If only i had realised what it was years ago , i might be fairing better still now . xxxx Dinny xxxx
Great thank you for that will mention it next time I am there,do you use oxygen with it? Val x
Hi Val ,
I used to be on overnight oxygen and still used it with the CPAP , however , i don't need it with the BIPAP which is great , sats are a bit low in the morning , 80 to 85 but thats not bad for me (apparently my body has got used to surviving on lower ox , according to the consultant , i feel ok at that and it soon goes up again .) .I imagine everyone is different . I hope it works out for you and you soon feel better xxxx Dinny xxxx
Thank you will see the 02 nurse sometime this week will mention it to her 
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