Told need oxygen - please help

Went for Pulmonary Rehab assessment and was told need oxygen for any activities (including just walking) - even though she said the oxygen levels rise very quickly when I relax. Am in shock because don't even use Ventolin on a regular basis and when I get out of breath I just stop and wait for it to get better before carrying on etc. My FEV levels are 49%. Also, I don't feel 100% at the moment (no outward signs of illness, but feel under the weather).

I was told that I probably won't be eligible for liquid oxygen because I live in a flat - does anyone else living in a flat get liquid oxygen (the type you can decant into a portable canister for carrying around)? Apparently the alternative is lugging around large canisters on a trolley - I don't have a car and as I work full-time etc this is not a viable option. Was also told that I MAY not be eligible for PR if I don't accept the oxygen......... feeling very upset with nowhere to turn - just don't have enough info on any of this. Will send e-mail to BLF after this re type of oxygen available for flats etc, but if anyone has any info at all I would be most grateful.

62 Replies

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  • Sorry but who told you that you need oxygen? Surely if you are seeing either a Consultant or Respiratory Nurse they are the ones to inform you of your need not someone on a PR course. I think you need to speak to someone else.

    Janet xxx

  • Hi jan

    The PR nurse is a qualified respiratory nurse , usual from the same local hospital as your consultant . I have just gone thought the same process.

    I believe there maximum is 2 lpm ambulatory , which what I am on.

  • Thank you - when you say ambulatory - in what form do you receive your oxygen?

  • Hi I use 2lpm contious flow, from a HCO2 M cylinder.

    Supplied with bag and trolley , they do not do a trolley that the cylinder will fit without a bag?

  • Sorry to be a pain, but how big is the cylinder, and how many are you supplied with each time?

    Thank you

  • They come in a couple of different sizes and you can be supplied with as many as you need, though sometimes have to push for them. When I was working I had three normal ones and three smaller ones. Now I only have the three smaller ones.

  • Hi

    Weight.....3.3kg

    Height.......52.7cm

    Diameter ......9.8cm

    Capacity .......490ltr

    I requested 4 cylinders

    Next day delivery Monday ..... Friday

    If order Friday delivery is Monday

    On 2 lpm they last 4 hours.

  • This is SO helpful stone. Thank you for taking the time - it's just the stats I needed to make my decision.

    Thanks again

    Kind regards

    xx

  • Many thanks for replying jandan - she is a respiratory nurse and she did do stats before and after exercise, so I'm sure she's right - just need more info re types of oxygen etc.

  • PR is basically exercise, so it might be the case that whoever is running it thinks it would be too high a risk to accept you without supplemental oxygen. If you want to do PR than why not just accept the oxygen and use it for the course? There's no law that says you have to use it for anything else - it's your choice. I don't know about liquid oxygen and flats, it would depend on access. The drivers need to be able to get the large and very heavy dewar with the liquid oxygen supply into your property and all they don't have any mechanical lifting equipment to help them get it up stairs, etc. If you had somewhere else on your property that was secure and away from a source of heat or flame - like a storage unit or garage they might be able to store the dewar there.

  • PLEASE don't be afraid! I LOVE my oxygen! it's MEDICINE! I have a 'concentrator' this marvelous little electricity charged easy to move about device makes oxygen and is easier than the bottles to carry. Yes its sad to have to have it but at least we can keep getting out and about, stay fitter and not let our other organs suffer from lack of oxygen! Ask your respiratory nurse about getting one if your on a low dose ( I'm on 2ltrs a minute) read about it, educate yourself and you will be glad of it believe me, back in the 90's my poor Mum was just stuck in with her huge tank of oxygen, a prisoner in her own home, maybe that's why I love my 'portable' so much!wishing you well,huff xxx

  • Thank you SO much for your reply hufferpuffer - the device sounds amazing - do you get it on the NHS or do you have to pay for it yourself? I don't mind using oxygen - and as you rightly point out it helps protect the other organs. It was just being asked to drag around oxygen canisters in a 'trolley' that I had a problem with - it just sounds ludicrous, especially as I work full time and would have to take the thing on the bus, as well as have it in the office (I don't have a car). You have given me HOPE - thank you - if you wouldn't mind confirming whether you can get the concentrator on the NHS or not I'd be very grateful.

    Thanks again and kind regards xx

  • Hello Dedalus, YES the concentrator I got on the NHS! it's called an Inogen One. :)

    I was started off on the cylinders of oxygen this Spring, the bottles were heavy and I was having them delivered every week which seemed silly ( I live down a very long and bumpy lane!) but they would only deliver 6 at a time, then they gave me a 'conserver' to attach to the bottle saying it would make it last hours longer but I just didn't like it. :( I had an appointment with the respiratory nurse to see how I was getting on and she said would you like to try a concentrator and I'm so pleased with it, it comes with a spare battery and you can use it plugged into the electricity.Its got a little trolley or you can carry it in its case and you can even charge it up in a car AND you can claim back money from your electricity supplier, but what is truly great is you only need to get it checked over every 6 months!They also have left me with two cylinders for emergencies! Good luck and I hope you don't have any problems with getting one, oh yes,when you go to PR they let you use their oxygen while you are there! :) hufferpuffer

  • Wow, that is good news - that you got it on the NHS. As for using their oxygen for PR, I was told they couldn't bring oxygen to the premises for Health and Safety reasons (they hire the Salvation Army Hall). As I was being told I would have to bring my own oxygen, and I saw someone else had a backpack with an oxygen cylinder, I found this a bit bewildering - surely it's health and safety whoever brings it!! Anyway, at least I'll be armed with this info from you, so that I can ask for a 'concentrator' - sorry if I'm being really dumb, but I don't know how it works - does it 'create' oxygen or does it need oxygen fed into it (I know everyone will be laughing at me, but I just have no experience of this at all). Thanks again hufferpuffer - this info really is great - and also the tip about claiming back from the electricity supplier. Many many thanks - Pauline xxx

  • Nobody is laughing. Everybody starts with not knowing and then learns. :) The concentrator works by sucking in the surrounding air and 'concentrating' it. The result is it can then supply you with oxygen, enriching the air you breath. Mine is supplied by the NHS and feeds me the oxygen I need at home, the piping reaching all over the house and into the garden. I then have extra lightweight cylinders for when I go out, to supply oxygen on 'pulse', or just as I take a breath, rather than continuously (though they can be used for continuous oxygen). I also bought a small, very portable concentrator for holidays, which runs from the mains or off batteries. x

  • Thank you so much for that Toci - that is so helpful. The extra lightweight cylinders when you go out - can you tell me how much they weigh, how big they are and approximately how long they last? I have been looking at portable concentrators to buy, but they seem to be around £4000! Is that correct? Definitely can't afford that. I was hoping the NHS would supply, but doubt it at that price. If you know where to get cheaper ones will you please let me know - sorry to be a pain, but need the info by Thursday, when the respiratory nurse is calling me for my decision.

    Many many thanks

    xx

  • The 'normal' type of oxygen cylinder I use (mainly in the car) is the Freedom 400. Weight full = 7lb-8lb.

    lpm Direct Flow With Conserver

    1 7 hours 10 mins 21 hours

    2 3 hours 35 mins 10 hours

    3 2 hours 23 mins 7 hours

    4 1 hour 47 mins 5 hours

    6 1 hour 11 mins 3 hours

    The smaller one I carry is the Freedom 300. Weight full = 4.6lb-5.7lb

    lpm Direct Flow With Conserver

    0.5 10 hours 16 mins

    1 5 hours 8 mins 15 hours

    1.5 3 hours 25 mins

    2 2 hours 34 mins 7 hours

    3 1 hour 42 mins 5 hours

    4 1 hour 17 mins 3 hours

    The lpm is the flow rate (setting) that is used.

    Check it all out here -

    airproducts.co.uk/homecare/...

  • Brilliant - again, just what I need - smaller cylinder sounds just what I need.

    Thanks SOoooo much - armed with all my info now and feel a lot more in control of what I need.

    Pauline

    xx

  • You are very welcome. x

  • As for the portable, yes, they are expensive, but I like holidays abroad and buying my own was cheaper than continually renting concentrators and cylinders. Try here -

    smilerehab.com/products.php...

    They are recommended by just about everyone I know and have given me an excellent service. They also can supply used products at cheaper prices.

  • Your info has been invaluable - thank you so much Toci - will visit the website too, because knowledge is a wonderful tool, and have learned so much from everyone on this website - amazing.

    Thanks again

    Regards

    xxx

  • Good luck. x

  • Hi Toci.. know I will be butting in on your conversation with Dedalus, but my husband has ..up to now, been on the little portable 'as and when' oxygen machine. Now his readings

    are too low and in a day or two we will get (for him) an oxygen concentrator which he has to be on 15 hours a day (or thro the night). We are SO relieved to have this coming but no-one

    that I can find has said I this makes a bigg-ish or even a worthwhile difference. Be pleased to hear from you on this as it seems you have the same thing. My husband still has the portable one as a back up..

    Regards

    Jean

  • Hi Dedalus, although it's very nice to see your name for the 1st time since the BLF makeover I'm very sorry you've had this shock.

    I take it it was the lung specialist physio doing your assessment who told you that? Did they test your oxygen levels before, during & after your assesment walk with the oximeter? Also, did they do a spirometry test? They must base their views on something. They often work closely with the practice respiratory nurses to speak to yours asap for their views.

    Try not to worry too much until you get word from your email to BLF (easy for me to say). I too live on 1st & second floors so can understand your concern. Hopefully, someone with more experience of oxygen than I will be along very soon to allay your fears.

    Coincidently I just recieved in the post a copy of a letter from my PR team to my practise nurse informing that on the pre assessment I did 540 metres in the walk and post assessment it was a whopping 750 metres! So it is hugely beneficial. I do hope it works out and you get to go on it.

    All the best to you for getting through the weekend with this. xxxpeeg

  • Thank you peeg - it was a respiratory nurse who did the assessment - she tested my oxygen levels before exercise (94) and after 6 mins of walking 330 metres it had dropped to 77, which IS very low. Now that I am over the shock, I don't mind using the oxygen for exercise, it was just the type of oxygen she said was suitable for a flat (i.e. I would have to drag canisters on and off buses to work etc on a 'trolley' (I don't have a car). I can't see the buses or my office being happy with my having oxygen canisters on the premises. Anyway, I have heard from hufferpuffer, who says she has a 'concentrator'. which sounds great - small and easy to carry around etc. Just need to find out if it's obtainable via the NHS. It's wonderful to see everyone's replies though, and I'm so grateful to everyone. Kind regards xxx

  • The others beat me to it, so some of this is just repetition but I’ll say it anyway.

    I’m guessing that your oxygen levels dropped significantly when you did the walk element of your assessment, and this is why they think you need supplementary oxygen during your PR. Also, perhaps the reason you are feeling under the weather is that your organs are not getting the oxygen they need as soon as you do anything strenuous. This is different from being out of breath. The oxygen doesn’t help with that. Like you I prefer to just wait and get my breath back rather than puffing away on the ventolin.

    I don’t know anything about liquid oxygen. If you can’t have it in your flat I should think you’d be supplied with the usual generator that runs off your household electricity supply. For getting out and about, some suppliers will provide portable concentrators which are fairly lightweight and unobtrusive, but if not they can be bought (I don’t like to assume, as they are not cheap, but as you are working full time, perhaps you would feel it was worth it). I find mine ideal, and a lifesaver. The battery lasts a few hours depending on how many litres you need, and it can be plugged in anywhere or into a car lighter socket. You can also get spare battery packs to increase the time before the concentrator needs to be charged up again.

    I don’t know if any of this helps, but please – don’t panic! There are plenty of people here who will have other helpful ideas for you. All the best, Jan :)

  • Thank you jabber - it IS a great help, as I know absolutely nothing about oxygen, and although hufferpuffer has already mentioned a concentrator I'm still not sure how it works (but will research it now I know they exist) - I really just can't even imagine myself dragging an oxygen canister around (it seems so archaic in this day and age) SO, by having someone else confirm that there is an alternative via a 'concentrator' makes me feel so much more positive about the whole thing. I will of course ask if it is available on the NHS, but if it isn't I will try to fund it myself - I work because I can't afford to not work, but this would be a priority if I can't get it any other way. Sorry if I'm being dumb, but I assume you still need a supply of oxygen as well as the concentrator? (I will do some research into these once I've checked out everyone's very kind replies to me, and I have replied to all). Again many many thanks xx

  • jandan rite its cons wat asses u for oxy

  • not at our hospital its the nurse

  • Mine was the respiratory nurse too.

  • Thank you caroll - all input is gratefully received - looks as though concentrator if way forward if I find I can get one. Kind regards

  • hi dedalus.my late bruv ad a concentrator.oxy man was good guy,told my bruv anywere in downstrs flat hed put tubes all over for him anywere,but after 2week hed ad enuff,wanted tanks bak as he said it was noisy,he was confined to wheelchair then so tanks bak concentrator went,i use to order em never any problem,he didn't have copd,he had cr,p meso,i cared for him his last 7month that's wat they give him wen it came alive,u get ur oxy and live,

  • Thanks Carroll - sorry about your brother - good to know about how noisy the concentrator was - fortunately I only need it for activities and not full time.

    Kind regards

  • Hi

    Do not worry to much. You will need your oxygen for your PR

    I went through the same process, I was put on 2 lpm when excercising , it is. purely to maintain your oxygen levels at a acceptable level. I rarely use mine out side of the course. I also live in first floor flat.

    As I bombarded the poor nurse with question, In relation to my option, whether I can use a pulse delivery system as oppossed to continuos, this would allow the use of a conserver , givening twice the time on each cylinder.

    Liquid oxygen is not a option, they not will carry the base unit up stairs.

    The other option is a portable unit, most supplyiers do these but it may a early version

    The only way to fully understand your option is to ask your PR respiratory nurse to refer you for a full assement with the oxygen team at you local hospital.

    I have been referred, it is a one hour assement , which I will sure to be asking about all of my optio

    GP are no longer involved in oxygen therapy . It is done by your respitory nurse. Who is stationed at the local hospital . They are your first point of contact. There are qualified in this field. They also run the PR classes .

  • Thank you stone - that's very helpful - I did keep asking questions but the resp nurse seemed in a hurry to leave (her time for the session was up, so I'm not criticising her) so I just had to leave some questions unanswered - hence asking all of you lovely people for your invaluable help - and as always this site is a mine of information (I have had all the best tips from here). I will check out pulse delivery system as well as all else; Once I have all the information I need I will call the respiratory team and talk it through with them; again, many thanks & kind regards xx

  • Hi - my husband has liquid oxygen, they won't take it above ground level due tot he weight of the storage dewar according to their blurb. Gill

  • Thank you for that - it's interesting - thought it was due to the safety aspect for other tenants in the building. Kind regards

  • Hello

    I was first told I needed oxygen when I started rehab to protect my other organs last December. I was really upset at first but used it to learn the exercises at rehab, by the time I had finished I felt fantastic, improved my fitness level and breathing I continued exercise at home very day. It is a shock and I came on here the same as you really upset, but like everyone says its just another medicine.

    Kim

  • That's so reassuring Kim - I think it's just been such a shock - am getting used to the idea now, but am going to research concentrators etc, because sounds as if it's a much better alternative to dragging around cylinders.

    Thank you & kind regards

  • Hello again

    I'm glad your getting used to it, it took me a while. You can feel normal again honest, they told me I could take my portable if I went shopping etc just in case, I've got a little trolley and I thought no way but now I think why suffer it helps me do more things. And if you have a concentrator you can have a really long tube so you can walk around the house, and you can claim a rebate for the electricity.

    Kim xxxxx

  • Thanks Kim - do you take the bus when going shopping - I'm curious as to whether they have problems accepting canisters on the buses.

    Kind regards

    xx

  • Hello again

    I've never had any problem, the booklet I was given when I first had oxygen says it is possible to transport your oxygen on public transport including the underground, but there are no fixed guidelines. To be honest people don't take much notice. Who will be your supplier.

    Kim xxx

  • Haha - that's so true - am sure you're right - don't know who my supplier will be as I haven't been signed up for it yet - hence all the questions - just needed to know what is available, how each type works etc before I said yes - got all the info I needed and more, thanks to you lovely people.,

    Again many many thanks

    Pauline

    xxx

  • Hi Exactly the same happened to my husband a month ago at the assessment for pr. It was all very shocking BUT we got over the shock and the oxygen has been delivered. He is only using it for the pr classes at the moment and has been told he will be assessed at the end of the course again. Please don't panic this is not because you are getting worse it is to protect your organs. The lovely people here really helped me and I hope that you feel a bit better now. Take good care TAD x x x

  • Thank you TAD - it's always reassuring to know others have gone through the same thing, and felt the shock (thought it was me just being stupid). If you have the time, can you let me know what type of oxygen your husband uses (is it via a concentrator, as others have mentioned above?). Many thanks for taking the time to reply and for your kind words.

    Kind regards

    xx

  • I think you should make an urgent appointment with your doctor before you go on any oxygen. Its up to them not the PR nurse.

    Bev x

  • Thank you hypercat - I honestly don't think my GP is interested - she has more or less washed her hands of the COPD after referring me to the respiratory team (which was as a result of MY request for pulmonary rehab). She is definitely not proactive in respect of this. I recently told her 2 puffs of the ventolin gave me the shakes so I was only taking one puff whenever necessary. She just nodded and didn't even mention alternatives...................not someone I can rely on.

    Thank you so much for replying - it's very kind of everyone.

    Kind regards

    xx

  • My PR nurse was able to prescribe oxygen and if I'm ill I call them instead of the doctor they decide if I need my AB's and steroids. I suppose it depends where you live.

    Kim

  • Thank you Kim - it is the PR nurse who will be prescribing the oxygen (and they have arranged for ABs and steroids via a repeat prescription from my Doctor. It is just the type of oxygen that needs to be sorted out, because it's just not going to be viable for me to drag around oxygen cylinders on buses to work every day.

    Thanks again

    Best regards xx

  • hiya pam x it was the the phisio who got my hubby on his oxygen . his sats were falling down to 82 he looked terrible . struggled for air never had the blue inhaler out of his mouth . couldn't be bothered at all . he still not well but at least he can get about more with his oxy and it gives him peace of mind . hopefullt you wont be on it long . some people get fit enough and come off it . good luck pam be happy x x

  • Thank you so much chrissy - I'm pretty much over the shock now and can look at things a bit more calmly and get everything into perspective. I know everyone's right - I do need the oxygen, but I hope I can get a concentrator, as hufferpuffer has, because it's definitely better than the alternative of dragging around canisters wherever I go. I hope your husband feels more positive about things now too.

    Thank you for taking the time to reply

    Kind regards xxx

  • When I went to PR and they found my O2 dropped on walk tests and other exercises they gave me I got extreme pain in my calfs. I have become much worse of late and slight inclines do the same very quickly. I do not use ventolin unless I really have to as this can mess up my heart condition. I mentioned in an earlier post that seem to have a problem of my O2 dropping when flat. Hospital put me on O2 all the time I was lying flat when I had an Ablation. This might be why I feel so lousy in the mornings.

    I hope you can find away around this the tanks are very heavy and it is a H&S issues of lifting above ground levels. But I have seen peeps walking around with little bottles in a trolley or holster many times in Coventry. A Fellow suffer at PR told me that they have a machine with small plastic pipes around his house so he can plug in every room.

    Hope you get it sorted soon.

    Be Well

    Phill

  • Many thanks Phill - sounds as if we could both do with getting a concentrator, as hufferpuffer has. It will definitely have to be some form of 'portable' device. I have no idea what an ablation is, but I hope you too can find a solution to the pain in your calves and feeling lousy in the mornings (I have had a lot of cramps lately in bed, which I'm now wondering whether it's as a result of lack of oxygen to the muscles?). There are so many symptoms and side effects to everything, but we just have to keep chugging along and try to find the best solutions we can. Good luck to you too, and thanks again.

    Kind regards

  • Ablation is a heart procedure by tubes in your arteries in the groin in my case to the heart. I have had 3 to date. the last one they messed about with the sinus node ( Natural Pacemaker) you are awake and it was strange when I saw my trace flat line!

    I get cramps to and also I wake with my hands knees feet bright red at the joints. All of which have arthritis in, not sure which condition is causing this?

  • Goodness, that sounds surreal - don't think I could have gone through that awake (I'm such a woos). You seem to be coping (as we have to, as there's no choice) but hope they find out more about the cause soon and then maybe they can look at making things better.

    Kind regards

    xx

  • Hi I am on oxygen up to 15hrs a day, I have a small trolley 2 wheel it in, but I have other disabilitys I have to use wheelchair when out now. But no ome to push me...?

  • Oh, I'm SO SO sorry mealy - I know there's a lot worse, and I didn't mean to sound ungrateful; I just had a shock because I went to PR to try to improve my lung function and it felt like yet another blow. However, you're so right and I'm not complaining, because I'm still lucky to be able to get around with or without oxygen. Are there no local charity groups that can help with you finding someone to get you out now and again. Do check around, as there is so much help around that we don't know about until we do the research. Try contacting Social Services in the first instance, and even if they can't help they will, hopefully, be able to put you in contact with other organisations who can.

    Thank you for taking the time to reply to me, and I sincerely hope your own situation will get better soon.

    Kind regards xx

  • thank you, it is nice to know someone will chat to you

  • Must be so difficult for you, and it certainly puts things into perspective for me too. Please do look around for volunteers to take you out and about - even if it's just to the shops or local park etc. Will make such a difference.

    Take care - you're an insipiration

    Kind regards

    xx

  • i am trying to find volunters, no luck yet dont no where to look? everybody seem to be at work etc , never mind , there are worse of then me i live in northamptonshire

  • Try calling Social Services and asking them about volunteer groups - also try googling "volunteers in Nothamptonshire area" and see what pops up - that should definitely get some results. Good luck - don't give up cos something will turn up if you persevere.

    Pauline

    xx

  • Having O2 is wonderful with excellent service fromNHS. The blood test which they do from the ear lobe gives readings in single figures. This I believe, is more accurate than the finger test. Apparently there are national criteria to decide if oxygen is needed. Normal readings are between 8 and 12. If lower than 8 oxygen is necessary. Mine was 6.1 and after oxygen is now 7.1. I have a concentrator at hone at 5lpm and 7 cylinders to use when elsewhere. Holidays in UK are no problem. All home equip is supplied to holiday destinations. A life saver which enables patients to live a normal life

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