New wanting advice

Hi guys, I've just joined hoping to get some opinions. My mum has COPD/emphysema and consultant has just advised oxygen and respitory physio as the next step. She's waiting on an assessment for oxygen at home and date for physio. We knew oxygen would come at some point but I honestly thought it would be a lot later on (to the point where she was constantly struggling to breathe instead of good days and bad days). But anyway, I was wondering anyone's experiences with oxygen, I think she'll be on it 16 hours out of 24 as to what the consultant said. Is there a lesser more manageable dose and how much of a life changer for both of us is this? Thanks in advance.

33 Replies

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  • I can't help with your question as not yet on oxygen but I'm sure someone else will be along soon to help - I do know that your mum will still be able to get out and about with oxygen cylinders/oxygen concentrator so it doesn't mean she'll be stuck at home all the time. Best wishes to you both.

  • Hello, I have been on oxygen 15/24 for 4 years and the only life changer is that of protecting your organs by supplying them with sufficient oxygen through the blood it does not help your breathing in COPD ( I have emphysema). I use liquid oxygen in a smallish tank ( a Helios Marathon) which I fill from a large one in my shed when I go out, and then from about 6pm to 7am from an electric concentrator in home. I am on 2litres and find that small tank will last about 8 hrs on demand so I can go out for the day if I want to. I also go on holiday, I ring up the oxygen company about 2 weeks before I go and they deliver what I will need to mmy destination and then collect after I leave for home. Hope this helps and puts your mind at rest. By the way I am 72 and am severe stage 4 and was diagnosed about 20 yrs ago. Keep smiling

    Carole

  • Hi Carole, I was on liquid oxygen until recently (the small flask) and am now on cylinders 3lpm continuous. Hateful heavy things. I`d like to go back to liquid oxy but couldn`t carry the Marathon- which I`d have to have. Just wondering how you carry yours. I`m thinking of getting my son to design a lighter weight trolley( He`s a consultant mechanical design engineer,) the trolley they`ve sent for the cylinders weighs a ton by itself. I don`t drive and don`t want to take taxis all the time. I like to see people I know on the bus and generally be normal but lifting this thing is going to bring on another stroke ! We have double deckers with high steps. I understand the Marathon would have to "breathe" so couldn`t put it in my shopping trolley. Be interested to know how you cope. Keep well, Sheila

  • Hello mskpjb,

    I have a rollator, not because I have anything wrong with my legs but I can put the oxygen in the bag and it is like having a shopping trolley...I find I can walk further with it than without it. You can get one by getting in touch with your occupational therapist, although I bought mine as it is a light aluminium one, cost me about £50 online.

    Keep smiling

    Carole x

  • Yes I thought about a rollator Carole but wondered if that would be awkward to lift onto the bus. The biggest "down" for me is that now I`m on 3lpm continuous flow the cylinder only lasts 2hrs 20 mins ! Can`t see me ever being able to have a day out or a train trip to see my son for the day. Oh well, there are others worse off. Thanks for replying Carole, take care, Sheila x

  • Ask your supplier for smaller tanks and a conserver which makes a 2 hour tank lasting a lot longer. I am on 6ltr and my tanks lasts ages.

  • Hi westielady, I can`t have a conserver on my cylinder because that makes it on demand /pulse mode. I`m on 3lpm continuous that`s the problem. So my cylinder lasts 2hrs 20mins but if I was on pulsed ie with a conserver it would last7 hrs. The very lightweight portable thingys don`t provide for continuous so even if i had a few thousand to spare (I should be so lucky !! ) they`d be no good to me. Thanks for replying, keep well, Sheila x

  • Hi again

    I have continuous oxygen with the conserved gives me oxygen when I breathe in. I am on 24/7 at 6 litres. I would still find out more before buying because it should be supplied. My tanks are like the portable the ambulances use.

  • Sorry westielady I think you`ve misunderstood when I say I`m on " continuous" oxygen I don`t mean I`m on it 24/7. I`m on it for ambulatory purposes or when I`m doing something that requires effort. I used to be on demand with a conserver ie when I breathed in and the oxygen lasted quite a long time. Now I`m on 3lpm "continuous" which means that it`s going into my nose continuously not just when I breathe in. Now the oxygen lasts just two and a half hours. You can`t use a conserver when you need continuous oxygen. Keep well, Sheila x

  • But I am on continuous 6ltr o2 but I can use the conserved, maybe I am just lucky. But I would still shop around you might be able to get 2nd hand. Try EBay good luck ;-)

  • Thanks for replying westielady I`ve decided to just get on with what I`ve got for now. I am going to carry my cylinder in my shopping trolley though instead of the heavy trolley they issued. It will be a little bit lighter and easier to wheel.Cheers, Sheila x

  • Thank you Carole, yeah she's having a pint of blood drained on Friday to help with this, her sats have been 88 for a while and this is why the next step is oxygen, to ease the strain on her heart etc and to decrease the chance of a heart attack. I just can't seem to get my head around the idea. I know what she goes through as I live with it every day but it's so difficult to come to terms with when she looks okay on the outside. I don't mean to be too personal and don't answer if you don't want to, but do you feel that having oxygen has prolonged and improved your life?

  • I think it has improved my life, I feel healthy and get few exacerbation, about 2 a year. I am on a course of pulmonary rehab and I think that is improving me too. It is my second one as I had an accident and was immobile for a month so my breathing deteriorated but it is improving again now. I will answer your question to Jimmy BOC is the British Oxygen Company, I live in Gloucestershire and have Air Liquide, I know the one in Southern England is Dolby Vivisol so it depends on where you live to what your company will be. Keep smiling

    Carole x

  • Thank you Carole, take care :) x

  • hiya bamanfa.

    welcome to the site, i can only speak for myself here, i have much he same copd/emphysema etc. and am guessing now been on oxygen for well over a year, at first it was 17/24, then "as needed". Although i've had a recent set back, i must say the benefits of this oxygen has far outweighed the difficulties, i,e i can now get reasonable nights sleep . although awkward at first i soon got used to it. i have ambulatory oxygen at home, which i have a 15 metre or a 20 metre length of hosing which more more or less can take me through the

    house. ,, i was also given 6 portable cylinders which fits into a neat back pack, which makes it easier to travel locally,

    [when i'm able :) ]both these can be fitted onto a nasal cannula. or a mouthpiece.

    These last about 3 hours, and are changed with a simple phone call within a couple of days [i am with boc oxygen]

    when needed.

    i find that boc are very good in answering any queries regarding oxygen.

    i think its best to take the consultants advice .

    i wish you and your mother well, and pray all goes well with the physio etc.

    kindest regards jimmy xxx :)

  • Thank you jimmy, what is boc? And the as needed option, that was something I was hoping for. How does that work? Just oxygen while you sleep to set you up for the day or when you get an infection and go through bad spells? Thanks again

  • hiya again bamanfa, first of all BOC MEDICAL is the supplier of the oxygen ,

    they will supply a concentrator machine in the house , which when switched on supplies my oxygen. to these lengths of tubing, which lets me move around the house. the lengths of these tubings vary, but they will give you whatever you need [i think i have a 15meter 20 metre and even 25 mtr ]meter, they have also supplied emergency tanks in case of power cuts ets.

    its really up to your consultant to decide how much is needed, some folks only need it overnight, others vary. some all the time.

    my "as needed" was my consultant first put me on 15 hours a day, then 17 hours a day, then he told me to use it at anytime, but i must have at least the 17 hours. but i'm an oap with fairly advanced copd so use it all the time now.

    but thats not all as bad as it sounds [read tadows post ]

    Its a life saver really to protect the heart and vital organs, many people with copd have heart failure, which again is not as bad as it sounds, it only means the heart is not pumping as it used too.

    unfortunately Bamanfa, its not as you think. its not just for odd times with infections etc. its as the consultant sees fit, To get the full benefit it must be used as they say, regular.

    But it may well be the consultant will recommend overnight oxygen only. I hope this is the case with your mum.

    but i promise you its not at all as bad as it sounds, and can assure you , your mum will see the benefit,

    tadows post explains i great :)

    i know i would not be here if it weren't for my oxygen. i'm quite used to it now, it doesn't bother me one bit,

    unfortunately for me i have back problems [ankylosing spondylitis ] for carrying the portable oxygen,in the back pack, but at least it helps me strengthen my back, and keep me reasonable straight :)

    love jimmy xxx :)

  • PLEASE dont panic - its not the end it is the beginning! My husband was given oxygen two years ago and we both just sat and cried - we honestly believed that this was just the beginning of the end. BUT no - it has given him a new lease of life. Its a bit of pain dragging the oxygen round but it sits in the shopping trolley or somewhere else! but he can get round. The oxygen company are fantastic - really helpful and kind. Oh and another little plus - the fire service came round and fitted all new smoke alarms! I am so pleased that he has oxygen - it really really helps him. We have just come to terms with another medication. It was a bit odd to start with having it in public but you soon come to deal with that - actually we got my husband a little scooter too so he is of great interest to little kids! My youngest daughter who was 12 when he started with the oxygen was a bit disappointed he didnt sound like darth vader! Lots of luck to your Mum, with much love TAD xx

  • Thank you all for your comments to help me understand this process a bit more, it really helps hearing from people who have been or are going through the same thing. Mum was due to have a pint of blood drained tomorrow but recent tests show that her blood oxygen has gone up so she doesn't need that done for now. I'm hoping that they will give her oxygen to use as needed rather than 15,16/24. Only time and assessments will tell though I suppose. Take care all and thank you again x

  • Hi, I've been on oxygen for about 8 years now and it makes a great difference. At first I used it 16 hours a day but unfortunately now I'm on 24/7. I have a concentrator in the house, in the bedroom, and a long tube attached which reaches everywhere in the house. You get used to it quite quickly and often forget it's there. Apart from when the tube decides to try and kill me by getting stuck or wrapping itself around my ankles!!! ;o)

    My concentrator is a Home Fill style, which means I can fill portable tanks from it to go out and about. These are not very heavy, one last two hours, the other seven hours.

    I use them in my car and also in the basket of my mobility scooter. I am in Scotland and my machine is provided and serviced by Dolby Medical. I do know that Home Fill machines are available in some parts of England because they were trialled there before Scotland.

    I often have to answer young children who want to know why I'm on that funny scooter and have a tube up my nose. You can have some very interesting conversations!

    I'm sure your Mum will get on fine and I wish you the best of luck.

    Kathy x

  • This made me laugh. I have the concentrator it gets hooked under a door you carry on walking and get yanked back.

    Kim xxx

  • Hi Kimmy, yes, it often gets stuck under a door or something.

    I swear sometimes it looks for things to wrap around. I'll be merrily tottering about with a cuppa and it gets me. Ping - OUCH!!! Good job I have a silly sense of humour. :-)

    Kathy xx

  • I found my tubing did that but I bought a draught stopper that is like 2 rolls of foam in material you slide it along the bottom of the door and it stops it happening. Just to show what I mean as I can't add a photo in a reply amazon.co.uk/DRAFT-DRAUGHT-...

  • Kathy I have has 3 falls due to tubing. Broke my humorous last year. I call my concentrator my dalek. My supplier is Dolby seems they are taking over some smaller company's. Small world.

  • Hi, Oh I'm sorry to hear about your falls. I suppose I've been lucky so far, just sore nose and ears.

    My machine was christened R2D2 by my grandchildren. Big Star Wars fans our family!! The mask and tube I have for Sleep Apnoea is known as Darth Vader.

    Dolby are very good. I've always had great service from them.

    Take care.

    Kathy

  • I haven't named my CPAP machine I will have to think about that one lol. :-P

  • I'm on a very low dose of half a litre a minute for 15 hours per day. I'm a bit odd as I was actually looking forward to having oxygen to keep my organs in good condition. I have very severe

    emphysema. I have small cylinders I carry in a BOC knapsack made for them. They are only about one foot long and three inches round, so very manageable. I wear it to the shops,etc, and I'm so used to it that it's part of me. No one seems to notice either !

  • Afternoon.

    I was really upset when it was first suggested, but now its just part of life and I wouldn't want to be without it. It will make your mums life easier and will make her feel safer.

    Kim xx

  • Hi Bamanfa. Everyone is different. My mom recently died at 81 from COPD. she was diagnosed with COPD AT 59 (quit smoking) and went on oxygen full time 8 years ago at 73. She felt better and more energetic right away. She did well, still went out etc until about a year ago. She viewed it as "many people take medications, mine just happens to show". she never did the part time oxygen.

  • Hi Bamanfa. I think the use of oxygen is totally dependent on your GP or Pulmonary physician. I also have heard people with COPD that feel using oxygen is ONLY for when you reach late stage. In MY situation, my GP put me on 2.5L oxygen ONLY overnight as soon as I was diagnosed as moderate stage. I had been improperly diagnosed by a different GP 2 years earlier; therefore when I was properly diagnosed with COPD, I was at Stage 2. I am VERY grateful that I was put on oxygen immediately and ONLY overnight. I am doing VERY well. Keep in touch!

  • Hi

    I have the same s your mum. I am on o2 24/7, nobody at the time explained more. The o2 is to get oxygen through the blood to the major organs. It doesn't stop breathlessness, but the o2 puts into the system which the lungs can't.

    I thought it was end of the world, but you do get use to it. Your mum will have to get walking around with a tube. Also when she goes out she may have to take a cylinder with her.

    Get an appointment with your GPs. COPD nurse and ask her to explain that is why they are there. They are very understanding. If you want to know anymore just message me.

  • Oxygen is administered by a written prescription from your Moms' physician. The use of oxygen doesn't necessarily mean she is "that bad." Oxygen is used a lot to help COPD patients recover from an exacerbation quicker and easier. It also aides them when fatigue occurs from trying to get adequate oxygenation. The bottom line is your Mom will be feeling better, breathing better and less fatigued while using it.

  • Thanks everyone, means a lot. She's been on it a few months now and can already see an improvement. She's down on her original prescription to 1 too. No where near as worrying as we initially thought, it's made her life better and nicely slotted into our every day life. Thank you so much for your advice and support everyone :)

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