British Lung Foundation

Don't want to go on 24 hr oxygen

Well looks like I am going down the wrong road! Am trying to limit my time on the oxygen. But I have to keep my Sats over ninety which I can only do on the compactor! Right now at rest i.e. Sitting the level is 81. If I practice my yoga deep breathing exercise I can bring it up to 90 and over but don't feel I can breath like that all the time.

Am exercising. Bike weights and loosening exercise. With oxygen. But it's this not keeping the sat level up without it that worries me!

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I don't think anyone wants to go on oxygen, just like we don't want to need an inhaler or antibiotics. But we take our medication when needed. That is all oxygen is - another prescription. If it helps you to exercise that is very good and who knows? Maybe the exercise will improve your saturation levels so that you no longer need the oxygen. :)

At a minimum it will protect your organs from the damage caused by low oxygen levels.

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I agree, it is possible for you to improve your natural breathing through exercise (case proved here), but you do need to put in the effort to do this, hence why there are Pulmonary Rehabilitation courses.

As for the deep breathing, you really must try. I spend all day at work, breathing deeply with pursed lips and don't normally think about it, it is just something I have to do. I am no athlete by any means, but I have to breathe as if I were, it is just another thing to get used to. Sharon tells me that even when asleep I can be breathing deeply, blowing into her face using pursed lip breathing (obviously at a slower rate), so it is possible to get used to doing it, even when sleeping.

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Thanks. Will persevere

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like all of us with lung disease sometimes oxygen is one of the necesary evils, but you gain a great team of nurses that are with you all the time home visits or telepone calls to check how you are doing and of course blood gases, I will not hide it from you these are painful but a must to check for co2. Hope all goes well for you. Ant

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Hello Ant nice to here from you , hope your keeping well.

Peg xxx

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Hi Pegbl recovering from 7 flare ups on the trot each one needed antibiotics one a horrible course of prednisolone I say horrible but I know they are necesary at times but they always effect my moods.

Ant

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BTW ANYONE HEARD OF WALKING PNUEMONIA confused .com

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Walking pneumonia is how some people describe a mild case of pneumonia. It's actually the least scary kind of pneumonia. It can be milder than the other types, and you usually don’t have to stay in the hospital. You could have walking pneumonia and not even know it.

webmd.com/lung/walking-pneu...

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thank you for that explanation i breathe a sigh of releif as i thought the doctors where pulling a fast one and adding to my lengthy list of comorbidities.

Ant

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:)

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Hi Ant, haven`t seen you for a while I hope you`re keeping well. Maybe you`re like me and read all the posts but post very rarely. It`s lovely to see a familiar face again. Take care, Sheila x

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I try to reply with thought but was answering one post when nearly done my computer self deletes.

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Ooh I hate that ! Even worse is when I`ve written a long text message on my mobile phone and done a letter wrong. When I press back to delete it the whole lot vanishes. *********** Sheila x

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simalar thing I was meaning but I was not editing

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A sats level of 81 at rest is quite low!! And It would be too low for me. It is really important to keep the sats levels up to protect your body organs including the brain.

Exercise and yoga breathing will definitely will help you metabolise oxygen more efficiently, and topping up using a compactor or concentrator is really sensible.

Will you ask for a further oxygen assessment?

Good luck!

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I AM GOING TO BE BLUNT, I AM ON 15LPM OXYGEN, 24/7 AND NOW, ONE YEAR ON ONLY GETTING INTO THE 78-80%SpO2 AT COMPLETE REST. I HAVE IPF RATHER THAN COPD

Here my view having got to a point where there is no more oxygen that I can use. Being on oxygen 24/7 is hard, but, generally the other choice is damage to the body. I have slowly dropped below 88 down to around 78-80 and already noticed that things aren't as they used to be.

I used to be realy sharp mentally, now things need to be checked several times, e.g. calulations for the taxman and missing words in emails. I have also difficulty remembering things.

Any bacteria, or, virus seems to be attracted to me and my bodies defences seem to be unable to defend itself. So various drugs are used to help clear up these problems which invariably wipe me out, reducing my appietite.

I can no longer get out of bed or even roll on my side, without the oxygen level dropping into the 50's. This leads to heavy coughing, a hot flush and my breathing becomes panicy, I have to use a self devised technique to bring my breathing back under control and get my oxygen level back up; it s very scary.

I know this sounds prety despresing, but, I was given months to live and it is over a year on. In that time I have made friends with many people that I would never have got know, discovered some wonderful new board games (a major passion of mine) and been able to plan my funeral. I have had time to sort out my finances, support our daughter and son-in-law to buy their first flat and our son to get a place to rent. However, for me, the most important of all is that I have been able to spend time with my wife.

This may not seem like much to some, but, just after I was diagnosed a colleagues partner died suddenly in the night without warning. She was left with nothing and no chance to say goodbye. So I consider my self incredibly lucky.

Here comes my advice. Do as much as you can today, which sounds like you are doing with the yoga and the exercise, enjoy what ever new experiences you can, for tomorrow you may need to find a less stressful thing to enjoy. If to do this, you need oxygen 24/7, then I suggest you use it.

Its a tough situation, but, try and find something to laugh at each day; it makes life better.

Best Wishes tenter

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Love it. And thank you. I have IPF. You are 100% right. I need to shake myself up and will do

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Good for you tenter! I hope you confound all the experts and live till you`re 100. Love Sheila xx

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Thank you Tenter! I am on oxygen 24/7 (although lower than you at 4L/min when walking) but am very happy, and grateful I have it! Without oxygen I would be in a terrible state! No-one stares when I am out with oxygen and in fact people are very kind.

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Like you sarcoid1234 I am so grateful for my oxygen. I`m on 4lpm ambulatory and I wouldn`t be able to go out without it. Or make my bed or put the kettle on or skip to the loo.... or anything ! I stopped being vain a long time ago who`s interested in me anyway. Children are the best. Mum is embarrassed because the tot is staring at my cannula but I always tell them it`s to help me breathe. They always shout out hello next time they see me. Sheila x

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Keep strong

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Thanks and you 2 (u2)

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