Newbie please can you help

Hi I am new to COPD I came out of hospital following a chest infection and was put on oxygen 2% for 16 hours. I have been told nothing the community nurses visited for a few days but apart from the health and safety aspect repeated reminders about the dangers of smoking, candles and cooking every visit they told me nothing any questions and I was told it would be sorted in clinic...after 6 weeks I recieved a clinic appointment but there was very little time for my questions to be answered whilst they were doing tests and blood gasses. and I was fobbed off into a waiting ambulance with questions unanswered. I was told my oxygen could be dropped to 1% I understand that this is good news but no idea why. What is the best time to use the oxygen in the 16 hours? I use it at night and during the day if I am active. I am finding it very difficult to manage the stairs in the evenings and night and it is much worse since they lowered it, somedays I am loath to go to bed at night and if it were not so cold during the snow would have slept in the chair rather than go through the ordeal of trying to mount the stairs, Some days are worse than others my bathroom is upstairs so I am up and down a number of times throughout the day for the toilet and to rest. I also get tingling pins and needles and cramp in my hands and feet in the evening when sitting watching tv. I have Sjogrens and Osteoporosis my mouth and nasal passages get very dry and inflamed

6 Replies

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  • Hi and welcome Airhunter. I'm on 1/2 Litre per minute for 15 hours. I usually have it on while I sleep and make up the rest when having a nap or rest in the afternoon. The oxygen doesn't help you breathe any better. It is there to make sure your organs have enough oxygenated blood. If you can use the stairs once in a while, try to, as exercise is one of the good things to do.

  • Hi Airhunter. I am lucky enough not to be on oxygen, so can't answer your question, but I wanted to say hello and welcome.

    Lynne xx

  • I came out of hospital with oxygen last April and a team of respitory nurses visited me for a fortnight to make sure I was coping with it okay. There should be a respitory department at your hospital who can help you or s respitory nurse at your surgery. If not I would ring the ward you were in and ask them who you get in touch with.

    Carole

  • Hi

    Give the BLF Helpline a call on Monday -03000 030 555 - we can help to clarify much of what you have asked - and guide you through the next few weeks or months - help you to understand your condition etc.

    Mark

  • Thank you I will do that, also forgot to mention I have Hypothyroidism it was over active for many years but now underactive, due to a very stressful event it has become unstable and I get Tachycardia I did feel that the oxygen helped with that and the panic attacks I experience occasionally, my weight has dropped to under 5 stone but I am very tiny. I am due for another appointment at the clinic maybe I will get more information this time it's been a difficult 4 months, my two consultants did not agree and discussed my treatment with others over my head much of which I did not understand but not me or my husband, we just feel let down and confused as following my discharge we were told the nurses would be visiting for three weeks to help with any enquiries but the information we were given differed from one to another

  • Airhunter, welcome to the group. Mark suggested you ring the helpline on Monday, do that and it might be helpful if you make a list of all the 'little' things (of which can make life miserable) which they will be able to help you with like your dry and inflamed nose and mouth which may be due to the oxygen as that does tend to cause dryness but BLF will be the best to offer advice on what to use.

    It is a shame you have not felt like you have had the information or the support from the hospital or community care, that is not right and you need the information and support so that you can do what is best for yourself.

    You are tiny but I suspect at 5st you are significantly underweight too and the bit of advice I will give you is with COPD, nutrition and weight are important to keep up so if you are not eating very well, perhaps asking your Dr for some liquid supplements may help you gain some weight - and from someone who has them for different reasons, a blob of ice cream in them makes them more tasty and gives more calories.

    Make a nice big list of all your questions and if BLF can help, they will. As will everyone in this supportive community.

    I am sure once you get the answers you are looking for and the information you need, you will be in a much better position to deal with things, not knowing what is happening and why makes things very difficult to cope with.

    Kat

    xxx

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