Oxygen level

[Diane11270]

Hya me again 😁

Is it safe for my oxygen level off air to be 82 - 85 whilst sat down doing nothing and if so for how many hours is it ok?

I am on home oxygen and I need it 16 hours a day, I do worry though when I haven't got it on that I am doing my self harm, I feel ok when I haven't got it on but when i move around it does drop into the high 70s and my heart rate gets faster, I'm at my oxygen reveiw on Tues but i get very, very nervous at every appt I go to, I should be more than used to appts coz I've been poorly all my life, I'm 48 and have bronchiectisis and mild pulmonary hypertension, I would appreciate any info of you lovely people xx

Stay well xx

[Caspiana]

Hello Diane11270 .

Nice to hear from you. 😊 I think that's too low, even if you are doing nothing and are just sitting down. I know I need to keep my levels over 90 to keep myself safe. Your heart rate increases to keep your body oxygenated when your lungs aren't keeping up. This can potentially, wear your heart out. It's important that you get enough oxygen, even at rest.

I understand about being nervous. It's not a pleasant time to go in for these appointments. Perhaps mention this at your appointment, I hope they will help you feel at ease. I sometimes feel very vulnerable when I have to go out. Just take things slowly.

Please do let us know how things go, if you'd like to.

*Hugs*

Cas xx 🌹

[Diane11270 in reply to Caspiana]

Thanks for the reply, yeah well that happened a year and half ago, my level got so low without me knowing that I ended up in hospital with right sided heart failure and secondary polycythemia! But with other meds and my home oxygen I am doing much better am just confused ad to how long I can go without my oxygen and it being in the 80s. I always make sure though I have the full 16hrs and especially if I am out with my husband or daughter I use my portable tank xx

[Caspiana in reply to Diane11270]

Hello Diane.

Please bring this up at your oxygen review on Tuesday. I think they may want to consider increasing your time. What happens when you sleep? Are you on oxygen or not? If your levels are low when you are just sitting down, they may be dropping when you sleep as well. Something to discuss with them maybe, to put your mind at rest. xx 🌹🌞

[Diane11270 in reply to Caspiana]

Will do, yeah am on oxygen while i sleep definitely, have to have it when I sleep xx

[Susan1200 in reply to Diane11270]

My Oxygen levels are mostly always 80 to 85 when I am sitting down, when I told my doctor he said that is nothing new my Oxygen levels are always low , but so far so good.

[PollyP in reply to Susan1200]

Oxygen levels of 80-85 may be nothing new but they are not high enough to prevent damage to your major organs!!! Particularly the brain!

Ideally our 02 levels should be between 88-92 at all times.

Do you feel you can request an oxygen assessment with your local oxygen service ?

I would if I were you!

PollyP

[Diane11270 in reply to PollyP]

Thanks Polly, I'm going for my 6 monthly oxygen reviewon Monday so will see what happens xx

[Susan1200 in reply to PollyP]

When I tell the nurse, whom I see twice a year, that my Oxygen levels are always low ,all she says is she can't do anything more,I feel as so I am banging my head on the wall.

[Diane11270 in reply to Susan1200]

Oh right, that's not good Susan, so what oxygen you on and how long and why do you need it if you don't mind me asking xx

[Susan1200 in reply to Diane11270]

First of all thank you for replying,I am not on any Oxygen at the moment on four different inhalers.

Over Easter,I couldn't breathe good,so called an ambulance my Oxygen levels were down to 74 the parametic decided I should go to hospital, when I got there a very young doctor checked me out 5 hours later he came and told me I had pneumonia and infection with that he discharged me with a needle still in my arm , another nurse was disgusted but as she said she could not go over the doctor.

But normally I walk quite a lot and exercise,I don't understand why my Oxygen levels are always down this is making me feel so depressed,I am sorry to go on ,I feel so fed up , because I feel no one understands.

Thank you once again.

[Diane11270 in reply to Susan1200]

Oh dont be sorry susan at all, i do understand how you feel but the last time i was in hospital just over a year ago they wouldn't let me home without an oxygen assessment and the home oxygen because my oxygen levels were too low. Just be aware that if your oxygen levels are permanently low you could be doing damage, that is why I ended up in hospital because I didn't know they were low until I couldn't carry on anymore, have you got an oximeter just to put your mind at rest? xx

[Susan1200 in reply to Diane11270]

Thank you so much Diane,i feel better already writing to you ,yes i do have a oximeter ,but it is not always correct ,sometimes it reads 45 levels it was not a cheap one ,but have heard there not always correct ,today is quiet good 90 to 93 .hopfully it is correct.

I wish you a lovely day .😀

[Diane11270 in reply to Susan1200]

NO problem at all, I still get worked up over it, I probably won't sleep Sunday night knowing I'm going hospital on Monday lol xx

[Susan1200 in reply to Diane11270]

Oh dear Diane ,i did not know you were going in hospital,and i am going on about my self .

I truely wish you all the best for Monday ,i will say a little pray for you .Take care .

Best wishes .

Susan .🌻

[Diane11270 in reply to Susan1200]

Oh no Susan I'm not going into hospital its just an out patience appt for my ixygen review, I have them every 6 months xx but thanks for the care 😁 xx

[Susan1200 in reply to Diane11270]

Oh well thats good to know ,sorry but i am from Switzerland ,so if i get it wrong then i understand i got it wrong .

I hop your reviews are good.😀

[Diane11270 in reply to Susan1200]

Thankyou Susan, take care xx

[Susan1200 in reply to Diane11270]

You too Diane 🐞

[PollyP in reply to Susan1200]

My oxygen levels are low because although my Fev1 is 58% my ability to transfer oxygen from lungs to body is rubbish !!!!

Just the way it is !!! 😊

[PollyP in reply to Susan1200]

Oh dear me!!! That is absolutely poor care, unless of course you are a C02 retainer ????

If you aren’t retaining C02 I simply don’t understand why you are on oxygen?

In your position I would be very assertive about being assessed for oxygen supplement. Unless there is a very good reason for not having oxygen then it is negligent if your medical caters to just do nothing !

PollyP

[Susan1200 in reply to PollyP]

PollyP ,what is CO2?

To be honest PollyP,i feel as so the nurse is not interested as one of the nurses at the walk in centre said there not doing enough for me .

[Diane11270 in reply to Susan1200]

Aww thanks Sue, that helps, glad it's not just me haha xx

[Diane11270 in reply to Susan1200]

Thanks Susan, that helps alot, glad it's not just me lol xx

[Hacienda in reply to Diane11270]

Hi Dianne, That seems too low, I have 88 -92 16 hours. the last few weeks and now, I have had oxygen on 24/7 due to an Exacerbation that hit me hard. I do know that Oxygen and SOB don't really go hand in hand and we are all different. I do my Breathing Exercises which help and I have TeleHealth who Monitor my Sats every morning. I think you should phone your Respiratory Nurse who will come to Visit and put you right. Good Luck Dianne, Please Don't Suffer. xxx

[Diane11270 in reply to Hacienda]

Thanks hacienda, I'm going for my 6 monthly oxygen review on Monday so shall ask then xx

[O2Trees]

Good replies from Caspiana. Those levels are unsafe - Ive always understood that 88% is the cutoff but that 90 and above is better. If you are prescribed O2 for 16 hours, if it were me I would use it at night since most people's O2 decreases during the night. If you are already going down to 82-85 in the day without the oxygen, then you are likely to go down even lower at night if you are not using the O2. But make a list of questions to take with you to your appointment and take someone with you who can take notes and help you remember what is said afterwards.

[Diane11270 in reply to O2Trees]

Yes my husband always comes with me on all my appts xx

[Caspiana in reply to Diane11270]

I'm really glad he does Diane. Makes a difference to have someone with you. xx 😊

[Pentreath Volunteer]

Hi Diane - can you take someone with you for the appointment so that they can keep track and make sure that all your queries are answered? Also helpful to have a second person listening so that you can review afterwards and make sure you understand what has been said and what you need to do.

[Diane11270 in reply to Pentreath]

Yeah my husband is going with me, he comes to all my appts as I do tend to forget lol xx

[skischool]

Dianne,hopefully at your review the nurse will check your blood oxygen levels,even though your sats readings are below the recommended 88-92 level it may be that your blood oxygen levels are ok on air at rest.the blood oxygen levels give a far more accurate indicator of safe levels than a pulse oximeter,as others have said and given your past history it could well be that you may have to step up your oxygen usage possibly to 24/7 but that is a decision for the professionals to take.............regards Ski's and Scruffs

[Diane11270 in reply to skischool]

Hya skischool, she has checked my blood taken from my earlobe every other time I have been so yeah i can imagine she will do again, it just worries me all the time haha that's just the way I am xx

[Diane11270]

I also may add I am on 1lt of oxygen xx

[skischool in reply to Diane11270]

ok that's the bare minimum on LTOT so maybe they will increase your flow rate over the 16/24 period.don't personally think you will have anything to worry about............best wishes and good health Ski's and Scruffs

[Diane11270 in reply to skischool]

Aww thank You, means alot for your reply because other than asking on here I feel very alone with this even though my husband and daughter are my rocks and are brilliant they don't fully understand my worries and why i get so so anxious when my appts are getting near xx

[Dasher50]

I've been on oxygen for a long time now and use it 24/7 I know that it can be a worring but you will get used to using it lm sure that you will get it all sorted after your appointment hope all goes well for you

[Diane11270 in reply to Dasher50]

Thank you dasher, I am just a pure worry wart! 😯

Yeah hopefully I will be a bit calmer after my appt next week, don't get me wrong the specialists nurses are lovely and very easy to talk to but i just want to get in and get out very fast lol!

I just worry that if I'm off my oxygen too much I'm gonna be doing damage but then again they said I only need it 16hrs a day xx

[nannyx6]

Thanks Diane 11270, for bringing this up i am in same position as you, i am on 3 lts Oxygen for 16/24hrs it is so hard to understand what to do ,i keep it on a fair more than 16hrs, the trouble is when you have things explained the resp team do this all the time and think you know what they on about ! i to get very nervous and just want out as quick as possible so may not hear everything if only it was written down if it goes below this use oxygen above that dont is it ok to stay on it 24hrs or not if you walking about with Oxygen what should your stats be , sometimes i feel like a complete pain if i Phone resp nurses as they always so busy, i know being silly probably but reading all these answers helps thanks

[Diane11270 in reply to nannyx6]

Oh nannyx6, glad it's not just me if you know what I mean, yeah i know its hard to decide isn't it, the nurse what came a few weeks ago just to check on me and my equipment put the oximeter on my finger and it only read 82 (I hadn't had my oxygen on for about 2 hours) and she said thats ok but then reading some comments its too low so now I have bought my self a oximeter and check it regular and without air and sitting it never goes past 83 - 85 so i do tend to only go a 2/3 hours a time without my oxygen now. If go out i always put it on if im walking around because i know for a fact it will drop xx

[nannyx6 in reply to Diane11270]

I get worried in case i get to much oxygen ! ( can you i really dont know ), i thought if you didnt need 24hrs oxygen it was fine to just take it off for couple or 3hrs at a time,i feel so stupid not knowing if i walk around i do put it on so hopefully doing it all right x

[Diane11270 in reply to nannyx6]

I am exactly the same as you, yeah hopefully we are doing the right thing xx

[oooodicky]

Hi 👋 I was on 16 hrs a day and come off it and go back on it as an when I please sats should be about 88 to 92 but you can get the small portable bottles to carry with you they aren’t heavy if you need to get in touch with your local oxygen company who put it in your home 🏠 good hunting.

[Diane11270 in reply to oooodicky]

Yeah that's just about what I do, i have portable bottles which my husband carries for me, still not plucked up courage to go out completely on my own yet xx

[oooodicky in reply to Diane11270]

Hey 👋 it’s fine nobody takes any notice of you I just sling it over my shoulder when I get out of breath I put the little tube on turn it on and I’m okay 👌 try it. You be ok.

[Diane11270 in reply to oooodicky]

Haha i know, I will get there in the end, saying that though it does get heavy for me also xx 😁

[nannyx6 in reply to Diane11270]

Just treated myself to a portable concentrator Inogen 4 expensive but so much lighter and i go out with it like a shoulder bag (bit heavier ) by the way i have just started a new inhaler called Trimbow wow what a difference it has made my breathing much easier. and start Rehap course soon so hoping excise will help, good to talk to you all xx

[Diane11270 in reply to nannyx6]

May look into portable oxygen concentrator, thanks xx

[nannyx6]

Where do you live Diane ? I live i in Rochester Kent love talking on here makes you feel your not alone with your COPD and see people have same problems and worries x

[Diane11270 in reply to nannyx6]

I live in Lancashire, yeah me too, it's helped me alotxx

[Diane11270]

Hya, went to my oxygen review last monday, levels were ok but i have had my oxygen turned up to 2ltrs from 1ltrs for 16hrs day, once tested on this rate my levels were good and my bad gas was also better 😁 also had a blood test for my secondary polycythemia because I haven't had it tested for a few months and also that was ok 😁

Need to go back and have another oxygen review on 10th may to take sure I am doing well on the 2ltrs.

Thanks everyone for your previous replies xx

[Yousaok]

My oxygen does it own thing so from one few minutes to the next I can jump from 70s 80s and less often 90s don't have oxygen at home Had tube down my lung last week but they kept me their for 4hrs as oxygen kept jumping up and down also have the feeling of drowning which is horrible cant bring anything up though

Due to be in hospital for the day on rituximab drip my first one if its OK waiting to hear if I ha TB ??

So much joy NOT