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Confused, oxygen

Alice70 profile image
43 Replies

Spoken to my consultant on Monday last ,I asked her could I be assessed for oxygen as my lung function test says I have severe copd ,idid guess at thatas my bteathing is much worse,and my inhailers (trimbow, Ventolin) are not work so Good anymore,Ventolin has never worked for me,her answer was yes I will be assessed for oxygen, then she said oxygen wont help with my breathing ,so now I'm wondering what oxygen will do for me ,I've already had letter to go for assessment in April ,I didn't expect to get appointment letter so quick ,can anyone explain what oxygen does if it doesn't help breathing ,I am sitting here wondering why give oxygen if doesn't help with breathing,its obvious it must help something ,I would be grateful for explanation of what it does

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Alice70 profile image
Alice70
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43 Replies
hypercat54 profile image
hypercat54

Hi oxygen is prescribed if your sats are very low and it's aim is to protect your other organs. Sometimes a side effect is it helps your breathing but it isn't given as far as I'm aware for just this.

I am sure others will be in shortly with more information for you.

Bevvy profile image
Bevvy in reply to hypercat54

Yes Hypercat54 you are 100% right. Oxygen is prescribed for protecting internal organs that require a certain amount of oxygen to perform adequately. Oxygen also helps stop them becoming damaged thus making someone even more unwell.

For SOME people an added benefit is that oxygen can help with breathlessness but it isn’t prescribed for this. Supplementary oxygen is carefully balanced because too much can be dangerous.

Oxygen is considered if sats are below 92 but definitely below 88. It’s usually assessed via walking test and possibly arterial blood gases test.

Unless you live in America where it appears (via Facebook sites) they throw oxygen at people with few tests, and even less information so people don’t know why prescribed and how it should be used 🤦‍♀️🤷‍♀️

Alice70 profile image
Alice70 in reply to Bevvy

Thank Bevvy for the explanation

Alice70 profile image
Alice70 in reply to hypercat54

Thanks hypercat this is a wonderful site,and as you say someone will explain further thanks for your input

CindyRose profile image
CindyRose in reply to hypercat54

Hi all...I'm not sure how to start a new status and mingle ...

So I chose 1 talking about oxygen, so I knew it's about C.O.P.D

So you are the chosen 1 lol....hypercat54

I was diagnosed somewhat over 5 1/2 years ago this Feb 1st with c.o.p.d / emphysema as I stated on a reply a few.weeks ago..

Mine was.due to my own life style of smoking 35 years...

I'm 56.. so I was diagnosed at just barely 50 ..I had stopped smoking 3 months prior cold turkey because I knew I had pushed my limits and once it was confirmed ....I felt like death was upon me and I felt too young inside to just be in this condition...,here I am ...now 56 almost 57...in a total different mind set and used to my condition...you have no choice but to accept it..I do not regret 1 cigarette ..maybe that's horrible to some but it's reality to me...I still have the pack inside a dresser.drawer,that I smoked my last cig out of...no clue why I kept it but it has become a joke now..

It never tempts me...I dont even look at it and think negative...why? I did it..no one to blame but me...

After walking a week around my 4 story home with a hose in my nose ,and feeling helpless...and only as far as the line would allow...

I took it off and My oxygen was maintaining a 96 level ,so I decided it's time to fix this...

I started walking, and my oxygen would slip down to 90 or 89 after 5 to 10 minutes..but I continued through it, as I walked my oxygen began to climb to 91 ,92...

I am 5 years in a half cig free and 5 years into my diagnosis...I have walked 10,000 a day since 5 years ago....

I was on Anoro for 4 years ..that's it..I had a rescue inhaler but never used it,I never needed it...

Around the 4th year I noticed maybe the med wasn't working anymore? Something wasn't right...so I waited for my yearly checkup and I was switched to Treledgy...it was a year this past Nov..and I still walk my 10,000 steps a day before my meds, I also use a spadometer each morning ,it's how I gage if anything changes...and I also blow in a peak flow....

Do any others use either?..I just do it on my own because nothing g changes ...if it does then I will be afraid I have progressed...

On my spadometer I usually blow a 3500 before meds ,after a 4000,sometimes 4500..

Peak flow I blow nearly the same...with or without meds a 360...

I don't know what's good or bad..you can't really research it...

Anyway..I hope all have a easy day of breathing..

Thank you for my vent.

Alice70 profile image
Alice70 in reply to CindyRose

Hi Cindy Rose ,just seen your post ,glad you have given up smoking ,I haven't, I'm a lot older than you 76 wishing I had the will power to give up smoking ,I don't understand spade miter numbers ,peak flow I do ,I don't think 360 is to bad ,but ofcorsre could be better ,my peak flow after taking meds is only 160 since i wrote this post i have had tests for oxygen it was said i didnt need it jet ,you are doing so well walking 10000 steps ,sorry can't help with other figures

CindyRose profile image
CindyRose in reply to Alice70

Thanks Alice..it's so weird ..in my FB feed they had a ad about the new way they identify c.o.p.d ironically....They ask 5 questions (sillish thing I have ever read I think)if you get 2 ,anything below 3 that you answer is no c.o.p.d..the questions refer to "if you worked anywhere that you breathed in fumes etc"...

Not once did they ask about smoking.

I only had 1 question that I agreed with and now I'm cured of C.o.pd..I don't understand this kind of stuff...

But they did mention peakflow...if you blow a 300 or more no c.o.p.d it's normal for woman...250...mild c.o.pd.this is extremely disturbing...

I had to do a 6 minute walk and 45 minutes to a hour of tests blowing...back over 5 years ago...then the dr tossed the results because he said it didn't seem correct and I should do it again...I said nope. It's all fine tho..my motto is "if you feel good live for that day and enjoy it"..

My Dr told me he has never diagnosed anyone who just started c.opd usually they are more then halfway ...I do t remember word he used...but much further along by years then me...he told me if I did t go back to.smoming ,not to cancel my plans for my 70s...I guess I should feel happy about that...but I feel any given moment it all could change...I'm just a positive person....thanks for your feedback

CDPO16 profile image
CDPO16

Hi Alice, I have short burst and ambulatory oxygen. The former is to use to bring my oxygen levels up when they drop below 89% and the latter is to keep my levels at an acceptable level when walking, ie between 89 and 92%. As has been said, it is intended to protect my vital organs but, for me, it has no effect at all on reducing breathlessness.

Alice70 profile image
Alice70 in reply to CDPO16

Thank you Carol ,I've always been under the impression that oxygen was to help you breath,dont no where I got that idea thank you for your explanation

Tykelady profile image
Tykelady in reply to Alice70

I would think that most people have that view. I did until I was prescribed it for heart failure.

Maricopa profile image
Maricopa in reply to Alice70

I was as well. However it is to keep O2 at 88 & above so your organs aren’t damaged. Organs are overworked when sats are lower than 88. One overworked organ, eg. heart leads to other organs failing. You can get too much oxygen which causes one to not feel the need to breathe. It’s in the brain stem that triggers our breathing desire. Too much carbon dioxide dies the same. Gases need to be correctly exchanged. Oxygen in and carbon dioxide out. Everything in balance.

tomc profile image
tomc

I am severe Emphysema, like you I went for an oxygen test but my levels are all over the place anything from 88% to 94% but my average level is 92% so I was told not just now!! In other words I am doing not bad and they like me just the way I am. Problem is, they can like me all they want but I still hate stairs, hills and walking sticks so, they gave me a flipping wheelchair, wohoo, I can`t wheel myself because my right wrist is fused and has a 6 and a half inch bar stuck in it. my wife goes ughhhhhhh when I ask her to wheel me and my carer say`s get aff yer bum and walk.

What's A guy to do?

Alice70 profile image
Alice70 in reply to tomc

You are very similar to me tom ,I suspect so are many on here ,like you I hate stairs slopes ,and bending down ,like you my levels are 94 or 95 when resting,I said this to my specialist she said to take it with oximetre straight after walking when I'm really out of breath ,I did,my level dropped to 90 ,I was really out of breath though ,I've had a stair lift fitted a few weeks ago ,I was having panic attacks ģoing up stairs ,I find it a god send ,I also have four wheels to push when going somewhere, ithink they are called a strollers ,it is not for my legs it's for breathing ,and for some reason I can walk much further with it ,I don't know if one would help you or weather you be able to push it with you hand ,thank you for your reply

Bevvy profile image
Bevvy in reply to Alice70

I also have a walking frame to walk although mine has 3 wheels not 4. I have chronic back issues and it helps me walk. However I originally purchased one when I realised I breathed better when pushing a shopping trolley at the supermarket. I think it is to do with arm positions and therefore chest positions which help with breathing. IE it opens everything up. Likewise I struggle significantly if having to bend to eg put things in a low cupboard or cut toenails. I guess because everything is constricted.

Oshgosh profile image
Oshgosh in reply to Bevvy

I’m the same with the walker. The pocket is useful for my oxygen concentrator .

Alice70 profile image
Alice70 in reply to Bevvy

Yes Bevvy that's how ifound out I breathed better when I was pushing a supper market trolly

Tykelady profile image
Tykelady in reply to Alice70

I recommend the Prestige walker/shopper. The only problem is it doesn't have a holder for my oxygen tank so my son fitted two hooks on the handle. About £100 online.

CDPO16 profile image
CDPO16 in reply to Alice70

I have a trolley walker in the house and last year bought a rollator to use when I was able to get out. It helps a great deal to have something to hold onto while walking.

skischool profile image
skischool

Alice Long term Oxygen therapy as others have stated is to ensure your blood Oxygen levels remain at a safe enough level to protect all the organs in your body.Your sats are just one of the many indicators of low blood oxygen but in general a blood oxygen test needs to be performed,this can be taken from an artery which is normally done in a hospital setting but a respiratory nurse can get a quick snap shot by doing a capillary blood oxygen level normally taken from your ear lobe which will also indicate low blood oxygen levels.It will also give indications as to the balance of your blood if it is acidic and as to the levels of carbon dioxide.

Oxygen can reduce breathlessness if it is caused by low levels of oxygen in the blood and it always baffles me why physicians always come up with this mantra,if i were to not use my Oxygen,even at rest i would eventually become breathless as my breathing pattern tried to compensate for the lack of O2 in my bloodstream and/or the levels of carbon dioxide retained,however there are other causes of breathlessness that perhaps in your case need to be investigated?

Best wishes Ski's and Scruff's

🙂😻

CDPO16 profile image
CDPO16 in reply to skischool

Your respiratory nurses are perhaps more efficient than mine who have never checked my blood oxygen levels. I only had that done when I was in hospital in 2020 and the doctor took it while I was on oxygen.

skischool profile image
skischool in reply to CDPO16

Carole if you are on LTOT as well as your short burst support it is standard practice to at least check your blood oxygen levels at least once a year given that we all have the potential to develop a degree of Co2 retention?x

CDPO16 profile image
CDPO16 in reply to skischool

I'm just on ambulatory and short burst oxygen so far Mike so that explains why blood oxygen levels aren't checked, thank you. I used the ambulatory when I was able to get out to local parks last summer and now have a small cylinder in the bathroom which I use while getting washed in a morning. The rest of the day it's just short burst as needed.

skischool profile image
skischool in reply to CDPO16

Yes that does explain your lack of tests and i imagine the only adjustments you have to make is when to use your O2 and at what rate best fulfils your needs.

😊👍 x

CDPO16 profile image
CDPO16 in reply to skischool

Yes and I have guidelines for what percentage to use.

Albertisadog1991 profile image
Albertisadog1991 in reply to skischool

This is one of the problems in supplying oxygen to some - in that like me at 85years old - I cannot be given oxygen as a carbon retainer. Instead I have to use an NIV machine with face mask for 8 - 12 hours each night as I am liable to stop breathing. I have been hospitalised three times in the past six months to have the carbon removed by machine - oh how I would love a breath of oxygen to get anything done .... but it would "do it " for me....😱

Alice70 profile image
Alice70 in reply to skischool

ski,scruffs ,I think I am learning more about oxygen from this site this morning, thanks for your input, explanation ,a day like today where it not cold sun is shining, but not to warm my breathing is a little better ,I know this is because I have no central heating on ,and temperature is just right for me

skischool profile image
skischool in reply to Alice70

I am glad you are enjoying a sunny day Alice and i am sure your respiratory nurse and consultant will be happy to arrange a blood test amongst all the other checks they are doing if that they think you may now benefit from oxygen.

😊😻👍

Alice70 profile image
Alice70 in reply to skischool

Thank you skischool

skischool profile image
skischool in reply to Alice70

😊👍

Caspiana profile image
Caspiana

Hi Alice, 👋😊

I see you have many good answers here so I have nothing to add. I just wanted to say hello and it is nice to see you on the forum. Much love.

Cas xx 🌿

Alice70 profile image
Alice70 in reply to Caspiana

Thank you so much Cas ,I hope you are well x

garshe profile image
garshe

I have been prescribed oxygen because ny sats were dropping to the 70's when walking. I was prescribed 16hrs a day Fortunately my sats have increased and I no longer require to be on oxygen. I still have it and use it for bathing. I was told it is to protect your heart and other organs more so your heart. My heart was racing as I suffered panic attacks.

I now have learned to control my breathing and my heart rate is normal. It's mostly in the mind and overthinking a situation can cause your heart rate to increase,also an exacerbation can cause this

I was suffering from health anxiety and was prescribed 0.5mg Lorazapan a tiny little tablet and low dose and it works for me.

I go out daily on my shopping trips and walk around for hours. I take my time remembering to breathe slowly and not rush. I stop if I feel out of breath, rest and then carry on

I hope you can manage your breathlessness but your Respiratory team are the best to advise you on this as we are not medically trained .we are all different but if you think Positive and not dwell on the negative you will succeed.

Good luck xxSheila 🚶‍♀️🚶‍♀️💕💕

Alice70 profile image
Alice70 in reply to garshe

Hi Sheila ,You are such a positive person I need to take a leaf out of your book, although I don't dwell on my condition I was getting panic attacks going up the stairs ,I now have a stair lift fitted a god send..This weekI have learnt a bit on here about oxygen. I think a lot of my problem now is that my inhailer doesn't work as well anymore ( Trimbow),I have tried others ,they were even worse .What inhailer on you using ?,and what are you sat ?, if you don't mind me asking .About a year ago mine were 29% ithink May of dropped more ,oh dear ill just have to wait ,and see what happens when I see oxygen nurses .Thanks so much for your inspiring input Alive x

garshe profile image
garshe in reply to Alice70

My inhalers are Ventolin Sirdupla and and Spiriva. My oxygen level is 95 . I havent seen my Consultant for 4yrs but my Respiratory team I speak to regularly and they call when I need them . Waiting now for my 3 monthly oxygen assessment at hospital The last one I was taken off oxygen as all sats were satisfactory . I have learned to control my breathing especially climbing the stairs . I used to look up and go into a panic attack. Now I just take it easy. I breathe in on first step and out on 3rd and so on until I get to the top. I dont really think about it anymore I just do it automatically. When I am on my shopping trips I do the same as I used to hold my breath and panic. Now I just breathe in thro my nose hold it and out through my mouth slowly. It's something I don't think about anymore.

I watched the film and read the book "The Secret" it proves you can achieve anything if you put your mind to it. I dwell on what I can do not what I cant. There are others worse off than me. I am grateful for every day and thankful I can get up and walk. I never rush anything, everything in it's own stride. I do take supplements which I believe helps my oxygen level, my immune system and other benefits. I take Chlorella, Spirulina ,Turmeric and Baobab. They are all natural with no additives as I purchase them from Organic Burst. No pesticides .photo below. . Hope this helps.

Keep safe but most of all keep Positive. Negativity attracts negative thoughts. xxSheila 🙌👍💕🚶‍♀️

My supplements.
Alice70 profile image
Alice70 in reply to garshe

Thanks Sheila helps a lot thank you so much

GDanker profile image
GDanker in reply to garshe

Hello Garshe, Hope you are well. May I ask how you managed to raise your sats from the 70s, when walking, to where you no longer need oxygen supplementation? That seems quite remarkable and am wondering if there is anything that I can do, that I'm not doing already, to raise mine. Do you walk every day and how far is a normal walk for you?

GDanker profile image
GDanker in reply to GDanker

It's GDanker again, Garshe, I didn't realize that these posts were 4 months old when I just now wrote to you. This was a reply that you gave to Alice 70. Hope you are still doing so well! Inspirational, really!

O2Trees profile image
O2Trees

Hi Alice, I havent read all the replies so forgive me if I am repeating.

I have ambulatory oxygen which definitely helps with breathlessness although it wasnt given for that. My sats drop to 86/87 when I walk at normal speed (which I know isnt bad compared to many here). So that's why Ive been given it - "for exertion" is the definition.

I have discovered after breaking an ankle early this year that when I was beginning to walk again - slowly of course - that I dont need the O2 for slow walking, i.e. strolling, which is nice as I can stroll into our little town, or on the beach, without my cylinder.

You may well experience a bit less breathlessness. For me, using oxygen tends to lessen hyperventiliation which is one of the things that makes breathing difficult and makes it more difficult for gas exchange to happen (this means oxygen exchanging with carbon dioxide in the alvioli).

However it goes for you, I hope oxygen improves your life. Take care :) :)

Alice70 profile image
Alice70 in reply to O2Trees

Thank you so much helps a lot to have posts like yours ,keep safe

O2Trees profile image
O2Trees in reply to Alice70

And don't feel embarrassed wearing your O2 kit in public. Just remember when you are out that you are an oxygen warrior :)

Every time someone goes out wearing oxygen and looks positive about it, this makes an impression on people and makes it easier for those who follow.

Also some of us have paediatric cylinders - they weigh less and so are easier to carry though you can get a trailer to pull along.

Alice70 profile image
Alice70 in reply to O2Trees

Just seen ,this great why to look at things

mauschen profile image
mauschen

All I can add is that when you have chronic COPD, your lungs slowly get used to performing with ever decreasing o2 levels. This is why you will be prescribed a lower dose such as 24-28%. This is to prevent injury to the alveoli and give the lungs no more o2 than it can tolerate

Alice70 profile image
Alice70 in reply to mauschen

Thank you mauschin your answer and others helps a lot

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