Oxygen

I have been using the oxygen for just over a week now and what a difference it has made. I have to trial cylinders and a portable concentrator, so off we went to Devon with both last week and I practised. I can't believe the difference that a comparatively low 2l/m has made. I have been walking a bit further each day and enjoying it. Not only do I feel better but the family have said how much better I look. I am only supposed to use it when I go out, but since even relatively simple indoor jobs can be quite difficult too I shall have to talk about that. So nice not to have all that back and chest pain. I have had one or two curious looks but a lot of kindness. One little boy asked my husband what I was wearing that tube for. Peter told him I was practising to go to the moon! What fun, like something out of Eagle, for those old enough to remember Dan Dare! I am still waiting for all the tests at the Bristol Heart Institute and also cataract surgery, but at least I have made some progress, thank goodness. The holiday was lovely too!

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I am so pleased it is working so well for you. :)

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Delighted to hear that Carnival and very encouraging for those who may need 02 down the road.

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Good for you Carnival. Great to hear how the O2 is helping.

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That’s great news Carnival and l do remember the Eagle and Dan Dare.

Take care xxxx

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mind you do not bump into any 'Mekons' enjoy and use your new friend to the full.............skis x

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Way, way, back soon after I joined this forum my B.B. said to me: “Mekons”. Errr...?

“You know the little green man on his saucer. Emaciated body, big head. That’s what we are. Mekons. Crap bodies but brilliant minds.” So I posted a picture of the Mekon and inaugurated the Mekon Club. Not a club anyone would want to join. But there were many takers.

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So glad. You deserve it.

Love and hugs

Kate xxx

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So pleased it's helping you. Love Bernadette 😳 xxx

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Next time anyone asked tell them your going diving for lobsters Carnival, surprisingly you will get loads of friends into the bargain. Lol. Pleased it's made a big difference to you. Keep well xx

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Not carnival sorry just lobsters, I'm just tired. Xx

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Like the idea of a lobster carnival!

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Me to x

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That's good to hear.

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At last Carnival! About time eh? So so pleased for you, you've waited a long while for it xxxxx

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Hi Carnival567,

So glad you are getting on well with your O2, like yourself up until recently I have been using 2ltrs per min when I am out and about and indoors for activities. I realised that things were not right and after being sent home from two tests for pulmonary exercise courses because I was not fit enough the resp. department. So now I have to be on O2 for at least 15 hours per day and you are so right its no fun trying to drag several yards of tubing around while doing even the smallest task and I will admit I have been feeling a bit teary. Then on my way downstairs on the stair lift clutching a pile of towels for washing with my O2 tubing wobbling and trying to escape and the concentrator making its funny noise I thought of those old B space movies, so that's how I'm think of myself from now on 'The Wiggly Creature from the Black Lagoon' .

I don't suppose the resp. people will supply a young 1950's actor all shiny teeth and brylcreemed hair to bring me my coffee. I'll just have to put up with hubby (though there's no hair left to brylceem).

Cheers.

Sue

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sue,what a lovely bright and cheery response to carnival. you keep hold of good man hubby,brylcreem is vile stuff and does not mix well with oxygen and naked flames.................regards skis and non greasy cat x

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Funny thing hubby was a barber and served his apprenticeship in the early sixties and brylcreem was still in use then.

Sue

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sue greetings to you and hubby.i trust his haircutting days are over?i must away to my bed now but very nice to have met you and may your o2 ambulation enlighten your life as i am sure it will do mine in the future,,,,,,,,,,,,,,,,skis and o2 free cat xx

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No luck with the handsome young actors I'm afraid. My favourite was Dirk Bogarde, who lived quite near so I occasionally met him. Those were the days when stars lived more or less normal lives! I am wondering whether the consultant will change the oxygen regime when I see him in a couple of weeks. I know how it is to feel a bit teary about the oxygen and everything that goes with it, but quite like the idea of being a trainee astronaut. Like everything else connected with this illness you have to laugh or you will cry. Lucky enough to have a loving family which definitely helps. My husband still has most of his hair, a handsome grey, but my sons are both going bald, all my fault of course as it comes from my side of the family! A mother's place is in the wrong! I sympathise with the complications of the stairlift, one hand for the switch, one for the cannula, and one for the washing. Hang on, not enough hands, what do I do now. Definitely poor design. We moved to a bungalow last year so no longer have to worry about that. Dear Sue, keep smiling. Love xxx

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Dear Carnival 567

I too am new to oxygen -Ot helps a lot

You mention portable concentrator - I am struggling with a child’s size cylinder and it only gives me an hour and half/ two hours of use- I would like to know about portable concentre ?

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Grace-olive I have a portable concentrator from the oxygen people, prescribed by the nurse. It isn't that small but it is on wheels so you pull it about. It is ideal on smooth surfaces, not so good on rough ones. It is battery operated but can also be plugged into the mains or the car, which is useful. I find the cylinders quite heavy when they are full but nevertheless nice to be able to breathe. It is still a case of getting used to them.

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Hey Carnival. There you go then!!!

So pleased for you and that you are finding it so helpful.

I began mine - ambulatory only - in August this year, like you I find such an improvement- I have lost that horrendous struggle for breath, the foul ache and soreness in the muscles - remarkable isn't it ?

So now, instead of only having half day to do anything I am now enjoying virtually where I was 3 years ago- love it !

Exercise classes twice a week, gym twice a week.

It all making so much difference- brilliant.

Hope you continue to benefit Carnival

xxx

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I'm glad you enjoy your exercise classes. I asked about PR but not allowed to until I have had the cardiology bit sorted out, if it ever is, which I doubt. However, I used oxygen today indoors while helping my husband change the bed, I haven't been able to before and worry about his back, which he may have to have surgery on. So much better for both of us.

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Hi Polly, delighted to hear you are benefitting from 02. I was under the impression that it would protect your organs but not help with sob.

In 2014, when discussing 02 with a consultant, I'd just had a major difference of opinion with, my husband asked if oxygen would help me with my breathing difficulties. The reply was 'it will make her last a bit longer.' Then grudgingly, he muttered 'It will help her a little bit.' This was a great way to promote 02 use, wasn't it ? In the end, after another 6-minute walk, he decided I didn't need it after all. That was 3 years ago and I've done everything I could to avoid going on 02. Thanks to posts like yours, I now look at it in a whole other light. Thank you for sharing your story.

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Hi Billiejean,

Thanks for your reply...

Woweeee, I think you deserve a better response than that from the consultant!!! re oxygen!!

Everyone I have met on the clinical scene in more recent years have been fabulous, do positive and helpful too. Perhaps prior to say 2010 they weren't always so!

When I had the 02 assessment in August the nurse who did the assessment, took blood from my earlobe told me that using 02 doesn't always help with breathlessness, but my experience is that is does, mostly! Very occasionally for no apparent reason I do get breathless whilst using it. I guess it depends on the individual..

It does mean I can exercise much more seriously than I could before which is such a pleasure 🤸🏼‍♀️🏃🏻‍♀️🏋️‍♀️ and stairs/steps are so much easier for me- no longer a daunting climb!

Lung function and gas exchange are very different it seems. My lung function FEV1/FVC is 58% and not changed much for years although clearly my 02 sats drop into my boots when I get up and walk!

If need be do check your 02sats on air while sitting and they are below 95 I would get them checked further.

Keep well 😊

Best wishes,

Pp

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Thanks Polly ! I've heard so many people here describe how much 02 helped them, they can't all be getting it wrong.

Your lung function is way higher then mine but when I have exacerbations my sats drop a lot on exertion as well.

In hospital in 2016, my sats were in the low to mid 80s every time I walked on the corridor. The same consultant ( now more civilised) told me that this was due to the infection that I had and they'd come up again when I got better. They did, more or less but I know well they drop every time I'm sob.

It's brilliant that you can now exercise and get up and downstairs easily. I think by any standards, that shows how helpful 02 can be. It's also great to hear that you sound happy and pleased. I've spent three years fighting against the idea but at this stage, I'm finally beginning to feel more mature about it. It's mostly posts like yours that have helped me to get over the fear, so if and when, I'll be ready.

Thank you !

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I remember Eagle and Dan Dare I used have Valiant as my comic of choice it would probably be banned now as it was not PC at all, but I did not know about PC as a kid! It was just a fun read.

Be Well

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My brother had Eagle and I had Girl, I read his but he didn't read mine. They were regarded by my parents as 'respectable ', but I loved Beano and Dandy, as well as Radio Fun. Simple pleasures.

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So happy to read that being on oxygen has given you such a positive result Carnival567 ! Being able to use both continuous flow and also the on demand flow is such a bonus. It certainly sounds like you had a lovely time with your family too. To have a positive approach to O2 will ensure a better quality of life for you and possibly your Respiratory Team may agree that using it indoors to enable you to do chores etc is also worth considering. Have a great weekend and do tell us how things are going.

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I have tried to be positive with my various problems, not always possible of course, but worth trying. I would rather have oxygen and feel better and be able to get out easily than worry about it. On an American blog I follow I was reading posts by a desperate wife trying to get her husband to use his oxygen and go out, but he flatly refused. Cutting off his nose to spite his face as the saying goes. All the best xx

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I am so plleased that the oxygen is helping you and you have a positive attitude to it you have had a Long journey to get it .I wish your positivity would rub off on me I know i should have accepted what has happened to me by now but unfortunatley i am still struggling with it all .Once again i am very pleased that at last things ate coming good for you Best wishes Margaret xx

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I think you do really well considering everything that has been going on for you. It is very difficult to accept all these changes, not always helped by the medical profession I have to say. Until we moved I had a wonderful GP who helped me a lot, but it has taken me 18 months to work out the system here and cope with its peculiarities. Positivity is hard won isn't it. We all slip at times. With love R xx

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