Just been to see my resp specialist only to be told what I already thought to be true,my lung function is down to 25% he wants me to go onto oxygen as I( am getting breathless more and more,I can hardly do anything before I break out in a total sweat and my sats drop,always dreaded having to go on oxygen and have people staring at me,didn`t think it would get so bad so quick,haven`t stopped crying since he told me this morning,not sure what to do,have always been a positive person,a fighter,but now I`m even considering a one way flight,couldn`t bear to not be able to do anything or very little,I live on my own,my daughter doesn`t want to talk about it,is there anyone out there still thinking positive with very severe COPD and low lung function,be nice to hear some encouraging words.Thanks in advance
Hopeful is giving up Hope: Just been to... - British Lung Foun...
Hi there I have thought lots about what if I have to go on oxygen how would I cope , but you know what I would cope because I’m not ready to stop doing things I want to do , if having oxygen allows you to get out and about and makes you feel that much better then it can only be worth it Hopefull as for people staring that’s their problem not yours honey and I’m betting a lot of those that do stare could well end up in the same position as yourself some time in the future 😊......, look only at the positives and look forward to be able to do more without the stress of gasping for breath 😘
Thinking of you
Hello Hopefull oh dear you are very down and I hope with our help you'l find your way back up again. I have very severe Emphaseama and bronchiectusis and a couple of months ago my lung function was 13. Was told that I will need to go on oxygen in the near future. To be honest I would sooner that than fighting to breathe any day of the week. If people look and stare dose it really matter, no it dosnt really . I have one life and will live it best way I can and if people can't except how I look then that is their problem. Please be strong and positive and remember that through our journey through life we have to face up to things, except what goes with it and move on. Also hopefull when you are on oxygen you will be breathing a heck of a lot better and that alone will encourage you to do more. So hang on in there my friend. Please keep Intouch with us,? 🌹✋️😉xx
I was diagnosed as severe COPD in 2011,didn`t even know what it was at the tim so just carried on smoking,working and going on holiday until New Years Day 2012 woke up after a party at my brothers and just could hardly breath,I had slept on the sofa with my brothers dog (Best I could manage lol) made it home after puffing on Ventolin most of the time,but when I got home it was just as bad so ended up calling 999 that was the start of the dreaded steroids,since then have ended up in hospital many times,in 2016 I was in 6 times 5 of which were type 2 Resp failure,they told my daughter 4 times out of the 5 that they didn`t think I would make it,but everytime I pulled through and would be sat up in bed the next day laughing and joking,got to be known by some staff as the miricle lady as no one could believe I could survive being so ill,in 2016 I had an ablation (thats where they burn off any nodules grown in tubes from heart to lung and was put on a Bi Pap machine every night at home,for a good long time I felt so much better,my oxygen levels have always been 94 to 95 which was good,but these last few weeks I have been getting so breathless I struggle to do anything,not every day though just some days and some days I would be fine,when I was breathless my oxygen was dropping last night it dropped to 74 but in less then 2 minutes it was up to 93,so I thought my visit to the specialist was going to be ok,I couldn`t get parked near Resp care so had a bit to walk,it was red hot as soon as I got in he called me in didn`t have chance to get my breath back,but didn`t feel as breathless as some of the other times,he stuck the oxi meter on my finger and just said I think we need to be looking at using oxygen !!!!,I couldn`t believe it,just thought once the weather changed and the pollen had finnished I would feel much better,before this last episode people were saying how well I looked and my voice was clear,calm before the storm I reckon,I burst into tears went and sat in my car and cried,cried all the way home and on and off until an hour ago came on here and couldn`t believe all the messages,what a lovely group of people you all are,I don`t come on very often,must make more time,but a great big thank you to one and all,I am at the moment trying to transfer from DLA Motability to PIP as you will all probably have heard it`s enough to kill the strongest of us,I was also recently diagnosed with severe osteoathritis in the bottom of my spine,have got two full knee replacements which still give me quite a lot of pain,but I will fight on,just seen a article on one of the Facebook groups for COPD of a lady who had special specs where the oxygen tube was fixed to them then down the side of her nose,you could hardly see it,amazing some of the things they keep coming out with,but this was in the US so probs yrs before we get it,sorry to ramble on x
So nice to hear you much more positive 😊 we are pretty much all in the same boat here so your among friends 😊 I haven’t been in much in recents months and had forgotten what wonderful people they all are here it’s like having a cup of tea with lots of best friends , keep coming in the support and friendship is amazing😊
Take care my friend
Hi there. My lung function makes yours look high and I have been using oxygen 24/7 for over 10 years. It is what gave me hope when I thought I could no longer have a useful existence. It replaces the oxygen I am short of when breathing. It kept me at work for years longer than I would have had without it and gets me out and about whenever I need it to. It is not the end of hope. It is just another medication. Rise up and use it with confidence to help you live the life you want to lead.
Hopefull.i have 22% lung function,i use ambulatory O2 some of the time when my sats drop and i am just back in from the garden after doing some weed spraying on my block paving,it's only gentle work so i am not using my O2 at the moment.perhaps when i mow the lawn i will use it,later i may go out to the supermarket to get something nice for dinner.i normally take my portable concentrator and nobody bats an eyelid as i amble round looking at the best deals in wine or whatever,perhaps even flirt with a nice cashier on the till.the reason i am writing this drivel is to show you that life goes on for O2 users or you can just give up the ghost and drift away,we don't want you to give up we want you to embrace life and enjoy it....................best wishes Ski's and an O2 free cat xx
Thank you I will ring BLF and have a talk,I was only in with my specialist for 10 minutes or so,I felt like what a waste of flippin time,all he did was put the oxi meter on my finger,I can do that at home,oh he said your sats are lower than normal,I said yes because I had to walk further because I couldn`t get parked any nearer and my breathing has been giving me problems,but with the hot weather,pollen etc no wonder.thank you taking the time to write xxx
It's strange that we have people posting about the difficulty of having a disabling illness but looking perfectly fit and healthy. Even to the point of having a badge made to display on their person to show that they are unwell. I don't know at what stage a 'look' becomes a 'stare'. The dictionary states "look fixedly at something with with eyes wide open" which doesn't sound like anything you are likely to encounter. More likely is that people are thinking what a brave person to be battling on with their life despite the drawbacks and what you will see is admiring glances rather than stares.
Hi Hopeful, I used to think like you and was really upset at the mention of oxygen but eventually I decided that I did need it. I now use oxygen 24/7 and would like to reassure you that it's been fine. I have been met with kindness everywhere I go and am not aware of any staring. Even if this did happen, it would not bother me now. Please don't worry, give it a try and see if the benefits it brings outweigh your worries.
Yes I agree coming to terms with this new life style which it is, a complete life changer. But tho it takes time we are really good at readjusting. I wear the oxy to tesco and anywhere else I need too, I have ambulatory Oxygen but I only go where I feel comfortable wearing it I also do not like the idea of people looking which they do but I’m getting used to it. It’s either that or 4 walls ?? Hope you know that many others face the same battle but it dosent have to be the end beast wishes Sam
Im on oxygen 16/24 since December and I have ambulatory oxygen too but haven't plucked up the courage to be seen with it outside . My husband puts the little bottle behind car seat and I use it in the car but not shopping or anything . I can't face being talked about locally and being looked at. I'm so self conscious and always have been. I should have called myself Mrs Anon lol. I'm going to copy you Samjeff and try it in a place I will feel comfortable and that will be amongst strangers on a bench overlooking the sea then hopefully I'll get Dutch courage and do a tesco shop locally...after all the purpose of oxygen is to prolong my life , decrease breathlessness and improve the quality of it so I'll keep that in mind and stop being silly lol
I completely understand I used to shop till I dropped, now it’s ordering on line endless stuff gets taken back to MnS by my hubby, really not that bad 😊 but over the last 3 years it’s got to be “I don’t care if you look”. You’ll probably never see those people again the alternative is not very nice(staying home) this past winter has been long and gloomy enough keep trying baby steps. Sam x
Yes online shopping is my main outlet.....especially in the middle of the night! Returning is only done when collected !
I live in a smallish place so it's hard to be invisible and as an ,'incomer' ( even though I was born and lived here until I was 17,) when I came back I was tired of constantly being quizzed by all in sundry so I decided to keep myself to myself as much as I could so I spend a lot of my time behind a large hedge in my house and garden , when husband is out I just get a cab if I want to go to tesco. Maybe I'll take my oxygen with me next time..... As you said....baby steps...... :)). Thankyou Samjeff
Hi Annastatia and Hopeful
I am on oxygen 16/24 and ambulatory too, I have pulmonary fibrosis and pulmonary hypertention, and have CREST syndrome. I am unsuitable for a lung transplant. I am 56 years old and have given up work as my hubby is 74 and has survived 4 lots of cancer. I have been told that with the severity of the lungs I have a life expectancy of 2-4 years (although I am determined to proof them wrong and live for many more years).
I am glad that I am on oxygen as it enables me to get out and to do much more. If people do look at me I smile pleasantly. I have been asked by some people if I am in a queue if it is oxygen and I say yes it is, but say it's a shame it's not my favourite tipple (Chardonnay lol).
My latest lung function tests showed one of my 3 stats at 17 (we can survive them going into single figures if needs be my consultant said). I was told yesterday that my hypertension in my lungs is at 75% (normal is 25% or lower). I had a little cry at that as even more deterioration, but soon bounced back as you have to get on with it.
I find having a cry helps to let out the disappointment at hearing negative stats but then continuing to remain positive and push yourself to continue to do things will help you stay more conditioned. They do say that the less you do the less you can do and that you become more breathless.
Come on here and read the lovely comments, it really gives you a boost - it sure does for me.
Take care all of you on the site. Regards Karen
THankyou Karen for jolting me into common sense!! You have made me realise my problem with ambulatory oxygen is just blooming vanity! If I had my leg in plaster I would still hop about , if my arm was in a sling or my head bandaged neither would stop me shopping ...so lugging oxygen with a cannula up my nose is nothing to bother about really once vanity is left out of it!! TO be honest I feel a bit ashamed when I read what others on this forum have to deal with , including yourself and husband, it puts my problem into perspective. I wish you the very best of everything you and your husband need to get through your trials and tribulations in this life . Thanks again and take care.
Don't be ashamed of explaining your problems on here hun, your problems are your problems and no less important to you than ours are to us, and people on here will help you through them. It's great to be able to talk things through on here with people who totally understand. Thanks for the best wishes, very much appreciated. Take care Anna xx
You're right Karen it is great to be able to talk in a place readers will understand. ITs a lovely sunny morning and I'm off into the garden to enjoy it. I hope sun is shining wherever you and husband are too. Take care xx
I was just like you until one day I said the hell with it. I wanted to go shopping but knew I would have to take my portable oxygen with me and this would be the first time I would be out in public wearing it. You know what no one even noticed and I felt so good! Last week when shopping I forgot I had it on and went to reach for something on the other side of the aisle and got stopped because I had the unit in the cart and the tubing wouldn't reach that far. A gentlemen and I had a good laugh! Wear the oxygen, go out and have some fun!
You made me laugh imagining you brought to a sudden halt mid aisle lol arm outstretched trying to grab a pack of chocolate biscuits.....😀
I've got a little tank/ bottle that takes 2.5 litres I think. It fits into a canvas bag that can be hoisted on my shoulder or carried but it's a bit heavy carried by hand . Ideally I would like a small portable shoulder bag concentrator 😀 I would also like a holiday touring Australia 😀😀 fat chance of either ! However one day this week I'll remember what you and Karen have said and sail forth with my oxygen to do my Tesco or Aldi or Morrison shopping ! Actually even the thought is quite liberating .........freedom !!
Hi I have been on this site for quite a few years and have seen lots of very severe members with lung functions even lower than yours and they have been at that stage for years. They seem to have quite a good quality of life and none of them are going anywhere very soon. This is why the term end stage is no longer used much as with newer treatments etc. they are all living a lot longer. You will too.
Where there is life there is hope so keep on trucking. x
One thing for certain I don`t intend giving up.have had a good cry,might have a few more,but I will face whats ahead of me and stay strong,to be able to walk further will be a great bonus,to get off the 15mg of steroids I have been taking for approx 2yrs and hopefully loose some of the weight I have piled on even that will help my breathing.Thank you ever so much xxx
It’s a change and change is hard so don’t give yourself a hard time for being a bit low. My husband went onto o2 in December and really worried about people staring. We then remembered how he felt when he got his blue badge at first, he wouldn’t leave it on view outside the house in case anyone saw it. Now he doesn’t give it a thought and he realised he would feel the same about the O2. It’s only been a few months but we don’t even notice it now, have been out for long days, away overnight several times and he has enjoyed joining in things again. Give yourself time and you will be fine.
I have been on ambulatory oxygen for eight months now and can honestly say I have so much kindness. I don't use a portable concentrator but instead trundle around two cylinders so that I can comfortably continue what I want to do for about 4 hours. More if I am not moving around, so I can turn the oxygen down or off. I had a train journey last week , the taxi drivers were helpful, somebody helped me on, another person helped me off. It is the first time I have done this by myself and I felt quite proud of myself. So don't let anxiety spoil your life. You can, as everyone has said, still enjoy life, and live it. My husband has just been told he has to have permanent colostomy, so with the two of us we shall have to be very organised, but we don't intend to stay inside four walls. The dog would never forgive us! Good luck xx
Hi Hun, September 2015, I was given oxygen, the best thing that happened for me as I was getting Desperate to Breathe. I have it 16 hours minimum, I also have a lovely Mobile o2, which is like a shoulder Bag. Today I have done 2 Hours Rehab, then later I didn't Breathe Easy Exercise Class. When I got home I sat in the Sun and got a nice Tan. You carry on as you are, a normal life. I have never had any Stares, if so, I would ignore them. You are alive, and this I'm so grateful for , my Oxy keeps me Going, yes, my Sat's go up and down, you manage it, you know your own Body. I hope to be Breathing a lot better soon, I'm having Valves inserted on 7th June, while I'm waiting for my call for transplant. I've been on the list almost 2 years. I love my Life, there are People a lot worse off. You are vulnerable and being on your own is not Good. Please talk to your GP for a Referral to Pulmonary Rehab, and other Help Groups. I hope all these comments from all these wonderful Friends will help you. Please Take Care. Love n Hugs, Carolina. Xxx🦄
Thank you,yes have been to pulmonary re hab approx 5 courses and met and stayed friends with some of the people,I intend to fight on after getting over the intial shock I will no doubt do some more crying,but don`t intend giving up,some brilliant people on here,I couldn`t believe all the messages,thanks to all of you xxx
Hello Hopefull . 👋
Goodness, this brings back memories. I hated the thought of being on oxygen. It really was scary. But you know what? It grows on you, and instead of doing less, you do more. I know for certain, my fitness levels and indeed my vital organs would not be at the level they are today without the aid of supplemental oxygen.
As for your daughter not wanting to know, I am wondering why? Not to pry, but reality check, this is important and you need support. 😑
And those people staring 😳, yes, I get it all the time. But I am more it less used to it. We need the oxygen, the people who stare? Well, we don't need them, so they are unimportant in the grand scheme of things. In the words of the famous jeweller Harry Winston, "People will stare, make it worth their while" .
Hang in there, this is definitely NOT the end of the world. It is the beginning of better.
Sending warm wishes,
Cas xx 🌞🐞🐝
Please don't give up and stay indoors all the time, fresh air is good for your mood and you get some vitamin D . I go out with my oxygen in the bag of my walker supported by a bungee strap to fasten to the frame and enjoy pottering round. Some people do stare though think they just feel sorry you have to use it. Lots are so kind in offering help which is very nice. You will get used to it and realise the advantages you gain from using it despite having to drag the lead round with you. Take care
Don't give up hope it's not as as as what you think .I've been using oxygen but only ambulatory for years and it's more awkward than embarrassing .😊 I'm now going to have n operation on my lungs o opefully after the initial recovery , no more oxygen .Anyway my friend it helps you to live .I wish you good luck nd take everything that is offered to you it's only to help you live .Much love Babs ♥️
I too was so shocked when told I would have to go on oxygen, as I thought I was doing well - going on walking groups, pulmonary exercise class etc.. That was 6 months ago and must admit still find it a bit of a palaver with all the planning to go out etc.. However, have just been on a long train journey and found people very helpful. Think my expectations were perhaps a little high as I still get very breathless going uphill even with the oxygen and now find I don't go out as much as I used to, which is pretty stupid really. Don't worry about people staring.....that's their problem, not yours. Good luck.
There is always hope. I never wanted oxygen either but get tired of not doing anything. I am going to start a rehab program to get me started on exercising on the 23rd. I will be bringing the oxygen. You were given the gift of life God will let you know when it is your time. Just take it a day at a time. I don't do much but have been doing a few dishes for my husband. I don't even want to know my numbers it will just limit me. Take care, Jane
I am so sorry to hear you feel so low. That was the exact post I could have written myself, about 4 months ago. I am also severe emphysema and on oxygen 16 hours a day. Yes, you will have bad days, but believe me, you will have good days too.
Have you been assigned a respiratory nurse to visit you at home? If not ask your doctor, they are so helpful and reassuring.
I also worried about going out with my oxygen on, and yes people look, but that's just human curiosity and they don't stand and stare. People all have their own problems to worry about. Do you have a mobility scooter? A scooter can give you some independence so you don't feel cut off.
I too have a grown up daughter who is in denial about my illness. That used to upset me, but now I realise it's just her way of coping with things.
When you first go on oxygen, it seems like the end, but please be positive, it takes time but you will get used to it, you will feel better.
Take one day at a time, look after yourself and reach out, there is help out there. X
This is one company that has the glasses you referred to but assume there are others as well.
I will say prayers for you. I have 43% Fev1, which I guess is the lung function number, and I've been on night time oxygen for a year. It helps. If I have to use oxygen during the daytime, I will, and won't care if they stare, I hope. Will use it anyway and just go to stores at the least busy times, etc.
a few points to give you hope - I hope - I have 19% lung capacity (last test over a year ago so maybe less now) am on oxygen 24/7 and have been on oxygen (16 hours initially) for 5 years since diagnosed. Good news re oxygen has been shown to prolong life and raise quality of life so don't be scared of it - hope that helps good luck xxx
Hi there ...another glimmer of hope is researchers at Portsmouth uni have found that Heparin , a drug that has been around for more than 100 years significantly improves lung function and breathing in patients with COPD!!!!! The article can be found on page 40 of the Scottish Daily Mail of 15 th May . It says in a pilot study involving 40 Copd patients inhaled heparin was found to boost lung function by 10% within days of treatment which made it significantly easier for patients to breathe.........oh pleeeaaasseeee be right ...............!!!!