Hi have not posted for a while , but I am getting concerned. A few people in 2015 have not made it into 2016. I use oxygen when moving about , mainly upstairs, uphill or fr long distances.i read some posts that say they are not down the route of using oxygen. So does this mean I am at the end stage because I use oxygen. I am still on 10mgs of steroid . This all started in August 2015 . Off for a ct scan in Jan 2016, then consultant in Feb 2016 . Any info much appreciated . I have ILD xx happy new year for 2016 to all x

11 Replies

  • you are not at the end far from it i started on oxygen back in 2006 and i still do all i can each day the only thing i can not do is fly so i look and do a cruise it is good for the lungs . so dont give up best cruise line for us is P&O so much help

    enjoy life

  • Hi I think you have to be under 20% lung function to be considered end stage? Are you? Even then I have known some end stagers to last quite a few years. I hope you are a long way from that yet. x

  • No I don't think so , it's the just not being told enough which scares me . They probably don't know enough yet xx

  • Dont get too worried about your oxygen ...i started on 3 liters of it then went up to 4 then 5 and now im back down to 3

  • Thankyou Mandy , I don't rely as much on daily flat walking with oxygen, but my hubby tells me off because he thinks I should use it more often cx

  • Oxygen protects our organs from damage ..some people say helps with breathlessness but its not something ive noticed myself but in the time ive been on it its changed often

    The best people to get information from is your oxygen assessment team, when you go to have your blood gasses done.

  • Thankyou for your replies, I was just worried because I have not saw consultant and docs do not seem to know enough . I've booked a cruise for April , and going by train to Northumberland as driving would be too. Stressful . Hope to enjoy many many years xc happy new year to all for 2016 xx

  • Greetings!! I hold up my hand and say that I thought that starting on oxygen was "the end". That was some eight years ago, when I was put on 4 litres a minute on pulse, ambulatory. My lungs have deteriorated (of course!) but I'm still on the 4 lpm free flow and now I'm also using L-TOT (long term oxygen therapy) for 15 hours a day at 3 litres a minute: I really, really thought that THAT was "the VERY End".

    It's changed my life -- that was always going to happen. I feel SO much better for having enough oxygen in my system. I don't wake up with banging headaches, for a start, and I know that my organs are functioning at a much better rate than they were. I've had to adapt what I do -- I take two full cylinders in an "old lady" shopping trolley when I go out, so I've got enough oxygen to last for as long as I need, and I remember (eventually) to put on the oxygen when I do stuff around the house. I've had to slow down but life's not a rush, is it!! I enjoy what I do and I do most of what I've ever done -- just at a more leisurely pace.

    Good luck with your scan; if you need oxygen, then it's for your better life. Greet it with open arms!!


  • My hubby has just bought me a lightweight suitcase so I can fit two oxygen tanks and my weekend clothes in it. I'm off two my sisters in Northumberland in Jan , he's always thinking of me x

  • I've found these comments really helpful I was assessed for ambulatory oxygen last July and I was gutted. I've had bronchiectasis all my life essentially and have managed fine, but over the last 10 years or so its slowly become more 'noticeable' and affected my quality of life a lot more. I saw the introduction of oxygen as a massive backward step. I'm still not happy about it, but I'm getting used to it plus I understand that its needed to help my other organs. I had a follow up assessment last month and when resting my O2 levels are lower so it looks likely that I might have to go onto oxygen 16 hours a day after my next assessment in a few months. That was worrying me so much - I can't tell you, but the comments on here have helped me a lot, so thank you all.

  • I don't understand how your body knows what 16 hours it needs supplemental oxygen. I am on 2 Ppm 24 hours per day...

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