I have a question

Every time I have been to my respiratory nurse because of shortness of breath and she has measured my oxygen levels its always seems to be 95/96 but obviously I will have been sat down waiting to go in ........ well in my wisdom I thought I would purchase an oximeter for myself probably not a wise thing to do :-( but last night I went upstairs to the toilet and just thought I'd be interested to see what it measures now as I was a bit sob anyway I put it on and waited and to my horror it said it was 86 took a long time before it started to go up....... so now I'm worried I went upstairs just now to get dressed and it had fallen to 88 but did come back up quicker this morning than last night and stopped at 95 ......... should I be worried ?? I'm supposed to be stage 2 copd so am wondering if I have progressed further ........ I know your not DR's but so many of you seem to have experience of these things and I dont want to bother the Dr if its not necessary

Many thanks in advance

cales xx

31 Replies

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  • Hi Discuss your findings with your respiratory nurse - see if s/he thinks it a cause for concern.

  • Thank you I am due a spirometery test so will ring on Monday many thanks for your reply xx

  • This is so annoying isn't it cales? You know how you feel but the 'evidence' doesn't prove it. I am glad you are due a spirometry test as this will show whether your copd has got a bit worse. I hope not.

    Have you been to PR? They will do a 6 minute walk test and test your oxygen levels afterwards. xx

  • Yes I went last year and will ask to go again when I see my respiratory nurse , have recently seen a few posts here saying below 88 can cause damage to your internal organs which has made me scared 🙁 sometime when I get very SOB I get a personal problem if you get my drift and now I’m wondering if this happens when my level drops and my bladder is closing down 😓

  • I don't think that's the case cales.

    I have heard others on here say it's only when your oxygen level regularly drops below the mid 80's and stays there for ages. If it only drops down then goes back up again within a short while then your organs cannot be damaged by lack of oxygen.

    I am sure others with more experience than me will be in very soon. xx

  • I have exactly the same problem with in incontenance when sob. V embarrassing.

  • It is isn't it but it's also made me want to stay at home and not go far ....... do you think its panic that causes it claraola ??

  • I do suffer with anxiety but I don't think that's what it is it's more of a physical thing with me...rather than panic. My bladder and bowels seem to just let go it's hard to explain! I use tena lady which helps a bit but like you am worried to go out which of course does cause anxiety so it is a bit of a vicious circle. I think seeing the incontinence nurse is a good idea as she may have come across this before. X

  • Yes I do understand exactly what your saying because that what happens to me it's like the bladder just loses all strength ...not a nice position to be in when that happens x

  • I know ((((hugs)))) in solidarity! X

  • The ones that you can buy are not always very accurate and you have to wait for the readings to settle down, up to a minute wait with some models, even then they can be adrift by 3%. So if the unit has settled down and reads 86% that would mean it could be in reality 89%. Try leaving it on your finger for a minute first to see if it rises. Being at stage 2, unless you have an infection, it is unlikely for your sats to go down that far. Remember that nail varnish can also give a false reading. The only way to tell how accurate it is will be with a direct comparison with a medical unit, they can cost over £1,000.

    I have one and just use it to see if the reading is up or down from my 'normal reading', irrespective of the number displayed. The same goes for my home blood pressure monitor. Along with a thermometer, I use them to help decide when to start my Rescue Pack.

  • I get different results from different fingers so don't take them as gospel, but as 2greys says, it gives an indication of trends.

  • Oh thank you so much I’ve been so scared I will take mine with me when I go to see the nurse and see if it’s out of sync if so it can go back 😊

  • I used to get the same bladder problem for a couple of weeks after being first diagnosed, and I think that it is down to anxiety. I have not suffered from it since and push my exercising really hard and get really sob but I am no longer afraid of getting sob, I have learned how to recover without even using my rescue inhaler, all a matter of confidence. I hope you can gain that sort of confidence too.

  • Thank you I hope I can too thing is I was diagnosed in 2012 and this bladder issue has only started recently I do feel that it is mainly anxiety as it happened back in March and was totally unexpected and became a big issue and then brought on panic every time I get SOB so it becomes a vicious circle xx

  • Hello all Can someone tell me SOB stands for

  • SOB, short of breath .

  • Short of breath.

  • As so simple after all. I have a horrible chest infection at the moment so I am Sob. Thank you Picsso10

  • Hi cales , I don`t think it`s anxiety that causes the problem but the anxiety aggravates the problem. Lots of us with copd experience this. It was explained to me once by a physio at Pulm Rehab. When you get a very short of breath occasion, the heart concentrates on guarding the very important organs. Guess the bladder is low on the list. I`d be interested to know if anyone else has any further information. Sheila x

  • I guess it’s not really something people want to talk about I just wanted to know if anyone else suffers with this and have been reassured to know that others do ....... so thank you for that 😊

  • Thank you Lilaclil 😊 so much better to talk to people that understand xx

  • Hope you get sorted when you see the nurse and I'm a right one to say this but please try not to get to anxious Because it Becomes a viscous circle and another problem you don't need take care xxx

  • from what ive read on here is the oxygen level in your blood and your fev1 are two different things. so having low oxygen level does not meen that your lungs have gotten worse.

    i have also read on here many times that if your oxygen level drops to 88 or lower then it can damage organs. and i believe that this is when people are tested to see if they need to go on oxygen.

    there's a lot of information on YouTube/ the internet on this. i like to read up on things before i go to the doctors....

  • Hello cales. I'm so very sorry that you're having bladder problems which, I would suspect, are anxiety related. The only advice I can give you is that when you get the urge, hold on for as long as you can. I used to go to the loo "just in case ", and if you do this your bladder will shrink and you will then have to go more often. If it does become a real concern, speak to your GP, as there are tablets that you can take. Good luck with the appointment. XXX

  • Ive had an ultra sound on my bladder and kidneys blood tests for kidney function and have all come back normal so I’m now under the continence clinic and physio to try and strengthen my pelvic floor muscles , trying all this before taking tablets 😊 ...... can I just apologise to the male members on here for talking about this embarrassing problem 😳

  • So pleased that you've tackled it straight away. Good luck. XXX

  • Why would you feel the need to apologise to us blokes?. Believe me this problem is not limited to the gentler sex. I daren't leave home until I've visited the inner sanctum.

  • Well that’s good to know that I’ve not embarrassed anyone 😊👍

  • I've been stage 4, "very severe" for two years, with 28% lung function, and my SAT score at rest is generally between 92 - 94. Just going upstairs will knock it back to around 88, getting dressed to about 84 -85, but in all cases it recovers quite quickly, generally 30 - 60 seconds back to 92-94. I have ambulatory oxygen, which will not surprisingly push my SAT score up to 96, even on occasion to 98. All I mean by throwing all these numbers about is I don't personally think concentration on the numbers is all-important, it's much more down to personal experience of sob and learning ways of dealing with it. Even at stage 4, I can still do a reasonable amount, admittedly slowly, but I have to be aware of my limitations, regardless of SAT score. But if it is any comfort, the fact that you say you're recovering fairly quickly to 95 or so sounds reassuring.

  • Thank you so much x

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