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Has anybody got oxygen at home is it easy fit use

Angelsstar profile image
21 Replies

Hi all Still struggling for breath am going for my oxygen assessment on 9th April . Consultant says my oxygen

levels are low in blood . I have lorazepam 1 mg twice a day which I struggle to save until the eve and bedtime as it’s always that time I am worse and it sends me into panic attacks also 5ml of oramorph when needed my c o p d is severe. It has really changed my life just to have a shower and wash my hair is terrifying I have to shower ruthenium wait a while and do my hair over the sink . Housework is impossible and we are hoping to move . Near the coast for better air maybe Southport. Just hoping oxygen changes my life and give me some back . I have put on loads of weight with high doses of steroids. I am on 7mgs a day of steriods for adrenal gland failure. Any help would be gratefully received

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Angelsstar
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21 Replies
JANET127 profile image
JANET127

Personally I think that is a long wait for your oxygen test! If you were checked in at the Hospital,if your levels were real low, in U.S. they would send you home with oxygen! If it is below 89...I would confront your Doctor for sure! Best of Luck!

Angelsstar profile image
Angelsstar in reply toJANET127

I was seenby consultant late Dec and he asked for assessment my blood oxygen is running at 87 when I am walking aroundmy nebuliser doesn’t seem to work anymore my appointment only came through late last week for April

peege profile image
peege

I'm afraid I know little about O2 - apart from it's life saving in more ways than the obvious.

Some people have it piped from tanks at home. Some people use ambulatory O2 as in out and about, with a small tank in a back pack or little trolley. Some use both. At my exercise class, two people have back packs - one has driven herself down to southern Spain for the winter - and one has a trolley. It really helps with moving about and getting that much needed exercise for lungs and body.

I wish you luck with your assessment. P x

Lina-61 profile image
Lina-61

Think you do need to chase uphosoutal appointment to try and bring it forward if you are struggling could ring and speak to your gp.

Hope everything works out

Lina1961

Angelsstar profile image
Angelsstar in reply toLina-61

Lina my GP is useless you fight to get your repeat prescription right they make a mistake every month .

oooodicky profile image
oooodicky

Hi I’m on oxygen at the moment if you’re struggling get in touch with your community nurse if you have one and tell her I’ve got it up and down stairs also ask if they can give you a portable ( Inogen 1 ) machine they only weigh about two kg they might or should supply you with one, good luck. 👋

Angelsstar profile image
Angelsstar in reply tooooodicky

Hi. Oooodicky how long does a small tank last do you have it on all night and day also what about showers and washing your hair please

oooodicky profile image
oooodicky in reply toAngelsstar

Hi I have a machine inside a bedroom with pipes going to one bedroom and another down through my ceiling into my living room so I can walk to bathroom or living room ask your nurse if she can sort getting it put into your house it doesn’t cost anything what electricity you use they pay you it back every three months good luck with it. 👍

oooodicky profile image
oooodicky in reply toAngelsstar

Hi ang, I have a biggish concentrater in spare bedroom going down to living room and bedroom your oxygen nurse can get it done for you free, also the ( inogen 1 ) can last 12 hrs and be charged up in house or in your car, a small oxygen bottle on number 2 will or supposedly lasts 8 hrs I think but make sure you get your self a community nurse 👩‍⚕️ or oxygen nurse if you’re sats are in lower 80 s tell them hope you get sorted soon don’t wait for appointment get on the phone I too are on lorazepam but only half of one when I need to good luck 😉.

mikeadams51 profile image
mikeadams51

Remember having ambulatory oxygen is only given to protect vital organs it doesn’t stop you being breathless. I’ve been on ambulatory oxygen for many years and it’s very easy to get used to. However it can be awkward when trying to do daily chores especially showering but it is worth the effort. Good luck and keep smiling.

PollyP profile image
PollyP

I agree that it is too long to wait for an oxygen assessment!

Can you request a sooner appointment, perhaps if someone cancels?

The good news is you will he assessed,

The bad news is that oxygen therapy doesn’t always help to relieve breathlessness.

So assume you have completed Pulmonary Rehab ? Exercise can really help.

And have you had your cardiac function checked ? That can also impact on ability to breath.

The BLF Websire has a good section on Oxygen Therapy.

Let us know how you get on won’t you?

PollyP

Hacienda profile image
Hacienda in reply toPollyP

Please don't give out Negatives, if you don't use 02. Best advise is from those of us that use it well. have a Nice weekend.

PollyP profile image
PollyP in reply toHacienda

Hello Hacienda, I think you replied directly to me?

If I have this correct then I need to let you know I am an oxygen user...

What did I say that you don’t agree with ?

Wishing you a good day.

PollyP

Hacienda profile image
Hacienda in reply toPollyP

Hi Hun, It was the reference "Oxygen Therapy doesn't help relieve breathlessness" At One time Long ago I may have agreed with You, I did say they did not always go Hand in hand...But since I have been on 02 for 4 Years, I learnt to Do My Breathing Exercises every day( 2/3 times) from being instructed by Rehab Nurses. I do Find it is very a Valuable exercise. I do get Breathless some times, and My Oxygen helps so Much as That is the First thing I reach for When I am Breathless ( Ambulatory) used when Exercising,(The Gym) or out shopping, etc. Sorry if my Comment upset you, Trying to Give Positives to Those That ask for Advise. Have a Good Day also. xx

PollyP profile image
PollyP in reply toHacienda

Hey, hey, thank you for your response.

You didn’t upset me, perhaps I didn’t phrase my original post very well?

It is very natural, wouldn’t you agree, that many people, before they understand the role which oxygen therapy plays, think that it always relieves breathlessness! And yes I agree infrequently it does...

I have a diagnosis of ACOS so often the breathlessness is due to the asthma component, Ventolin helps with that.

Oxygen doesn’t always go with stage either does it ?

I am stage 2 and using Ambulatory 02 for the past 18 months. It has helped me loads, I am much less fatigued as able to keep much fitter!!!

Great that you are able to do the breathing exercises and the gym etc.

Exercise is so important isn’t it ?

Hope your day is wonderful.

PollyP

Angelsstar profile image
Angelsstar

Well am really suprised thought it would def help with breathing seems a waste off time and money for all concened it’s the breathlesssness thats the struggle..

Hacienda profile image
Hacienda in reply toAngelsstar

Hi Hun,Take no Notice of Some Negatives here, We are here to help with Positive answers, so those who don't know, best to say Nothing. I Live because of Oxygen. For Some of us, it is a life line and We use it to keep our Organs maintained. I am always Positive, I sleep with 02 from a Concentrator, I have Ambulatory by way of a Lovely Little Shoulder Bag ( Inogen 1) , I do not get as Breathless, as I used to because of it. Use it Properly and Know your Own Body. Amazing all the things you can achieve, that you couldn't before. ( I am 4 years on 02) My Life is Good and I work Hard for it to be. Good Luck Hun. xxx

PollyP profile image
PollyP in reply toAngelsstar

Pardon me, but you have written is not helpful. If you read up Respiratory Physiology you will see tha breathlessness is related to a different system ie cardio vascular...rather than our capacity to use oxygen.

Have a good day 😊

Jomo46 profile image
Jomo46

If your oxygen levels are low, it damages your heart. So they put you on oxygen to protect your heart and other major organs. I’ve been on ambulatory oxygen since December. I find it does help with the breathlessness and I can do more, but the breathlessness is still there. I have to pace myself. I can get up the stairs with it, without the oxygen I would have to take it very slowly and lie on my bed for a while once I made it. The oxygen means I can do more, at a slightly faster speed and the exercise is good for us. If you get the chance of pulmonary rehab, take it. They teach you about breathing, diet, etc and the exercise definitely helps.

The long coils of plastic tubing in the house are a pain, but gradually you learn to cope. Going out with a backpack also takes getting use to. Everything takes longer as you negotiate getting in a car etc. It has definitely helped me. Before oxygen I was moving quarter speed, now I am more like half speed.

Good luck with it.

Hacienda profile image
Hacienda in reply toJomo46

Very Good Answer Jomo 46. xxx

PollyP profile image
PollyP in reply toJomo46

You leased the 02 helps you. Yes it protects the heart, and remember all the other major organs as well! Especially the brain.

Have a great day 😊

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