SAD TODAY!

Yesterday was the PR assessment - my husband has done one before we knew what to expect and off we went. In truth it wasn't a good day to be doing a walking test - he has been really breathless for a few days and it was stressful getting there. Having said that the good news is that the FEV lung function has not declined still sitting at 28%, his blood pressure was good (the tablets are working) and his SATS were as they usually are 93% resting. BUT the walking test was dreadful. The nurse stopped it within two minutes because his SATS had dropped to 80%. She asked him to do it again after a rest and had to stop it again - same problem. It was then suggested that he do the test with oxygen. This time it was better. It was very matter of fact - the nurses didn't realise how devastated my husband was. (He is brilliant at hiding it!). I know all the logic behind it and I know it may only be temporary - sometimes patients using it only during exercise in PR. Oxygen now ordered and on its way to us. Though he only has to take it to the classes which start in 3 weeks.

I know that some of you are on oxygen 24 hours and I know this is not the end of the world. It came as such a shock, there was no discussion. It just seemed fait accomplit. Ah well, want to scream we go on holiday on Thursday - the shock has left him reeling, he is very SOB today. I have tried to reassure him that it is probably as much the change in air pressure and weather as much as anything else.

He is worried about the children but I have talked to them and explained this is not because Daddy is getting more ill it is to maintain his quality of life.

Thanks for listening............ TAD xx

36 Replies

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  • I'm sorry to hear that Tad, I hope once it sinks in he will come to terms with it and it won't seem so bad. Nice too that you ave taken some of the pressure off by telling the kids. Thinking of you.

    Lynne xx

  • Thank you xx

  • Thinking of you both and your family, hopefully he will improve with the cooler weather.

  • This raining stormy weather isn't helping - it seems so heavy. I am sure he will be much better when we get away and relax for a couple of weeks. Thanks TAD xx

  • Sorry to here about your husband Tad. I've been on oxygen when exercising for 3 years now and its not so bad. He'll soon adjust to it and may find he is able to do more exercise which will in tern improve his overall fitness.

    I am surprised that they stopped him when his sats dropped to 80 as mine always drop to the low 70s and they have never pulled me up. That's at 2 different hospitals and breathe easy classes.

    Tell him from me that using oxygen isn't a backward step and to use it whenever and whenever. Yes people can stare but its amazing how quickly he will get used to that. People stare at me sometimes and I wonder what there looking at now as you tend to forget you've got the oxygen on.

    Tony.x

  • Different yardsticks I suppose and it was the fact it was such a shock and so matter of fact. You are right we will get used to it! Thanks xx

  • Oh, Tad. I remember how I felt when first given oxygen (when I was still working) and I really feel for your husband. However, the good news for me was that I realised how much better I felt when using it. I now use it all of the time (for the last 4 years) but have quickly adjusted and it feels quite "normal". Think of it as you would needing a walking stick or a hearing aid. We are a very adaptable species and can soon get used to lots of things! xx

  • Yes my husband still works full time fortunately he sits at a desk most of the day so probably wont need it then. Glad to hear how much better you felt using it - hope he does too! xx

  • Hi tad I remember well the feeling of disbelief when told about my oxy requirement.

    One adjusts and anything that helps is a blessing.

    Take care and good luck,

    Chris

  • I hope he will be able to adjust - sure he will - we have no choice!! Thanks xx

  • Stitch - you have made my day! xx

  • Hi

    Snap at my recent assessment , I was asked to return , for test .

    One no oxygen .

    One with 1lpm

    One with 2lpm. It was decided I would benefit from 2lpm.

    The reason is you sats are not returning to normal quick enough , hence the need to use when exercising or moving around,

    I have to attend a further test at hospital I believe it takes one hour, this will decide the correct amount and all options available.

    The normal cylinders last about 4 hrs, if you are tested for a conserve this will double the time.

    On my order I asked for a bag and trolley. Plus I am starting with four cylinders.

  • Hi

    Just to add

    At the moment you breath in 21% oxygen

    With 1 lpm you breath in 24%oxygen

    With 2l lpm you breath in 28% oxygen

    So as you can see it is only a small increase, just to control you sats.

  • Thanks that's really interesting xx

  • Thanks for taking the time to reply - that useful info. xx

  • I'm on oxygen Tad all the time, I cope and I am better for it. It really isn't all that bad. I can understand how it must have knocked you all for six.

    Lib x

  • Thank you Libbygood xx

  • Be positive its the only way.

  • Thanks - I will be! xx

  • Tad, was your husband not advised to use his oxygen when ambulatory? It sounds as if that is when he needs it.

    I have to use oxygen when ambulatory and have done for two years now. I started out on 2 litres which was increased to 3 at the beginning of this year. Following a very severe exacerbation in April, which knocked my lungs for six, I was reassessed and now have to use 5 litres when doing anything. My cylinders now only last about 1hr 40mins which can be a pain at times!!! lol

    Surely the hospital will allow your husband to use its own oxygen supply whilst he is at PR.

    I hope he soon becomes happy to use oxygen which really is of great benefit if it is required.

    Therese. xxx

  • No he wasn't. The PR course isn't run at the hospital - at a local leisure centre so he has to have his own supply. I think it was more of the shock value! We hadn't expected it. Thanks for your reply. TAD xx

  • Ah, that explains it. We start our PR at hospital for 6 weeks then are offered 12 free weeks at a Healthy Living Centre. After that, it is up to us what we do. I assume once I leave the hospital PR sessions I will have to use my own oxygen.

    It must have been a huge shock for your husband if no previous mention of using oxygen had been used by a Dr etc.

    Therese xxx

  • Yes it was - the nurses were great but so matter of fact. My husband doesn't even have a chest consultant and our GP is OK but has no depth of knowledge of COPD. No-one has ever discussed oxygen for him! I am sure he will be fine and we will cope. Thanks for responding TAD xx

  • Hi, you say your husband hasn't got a chest consultant, could you ask your gp for a referal, especially now as he has been given oxygen. Best wishes

  • Apparently in our area they don't refer you even if you have oxygen unless you are deemed not to be coping ie having many exacerbations etc. I think we will talk to the PR team when he starts the course. Thanks TAD xx

  • In our area only a consultant can prescribe oxygen for 24x7 use, but portable oxygen can be prescribed by a respiratory nurse or therapist.

    The thing is that treatment for COPD is so well documented that the truth is unless there is a significant change or abnormality regular appointments with a consultant aren't necessary. Our local surgery has specialist respiratory nurses as well, so that can make a difference.

  • I was just about going to suggest the same thing. We can all ask our GP's to be referred to any hospital Consultant no matter what the health problem may be.

  • I have read your message about your husband's experiences at PR. Up to now, I haven't needed oxygen, but am having PR assessment, soon. I am looking forward to it in a way, but wondering what needs it will show up. Since

    I am old, accept the inevitable, but hearing about your husband, I am sending you both and the children my very best wishes for everything. Love Annieseed xxx

  • You are kind thank you. Good luck with your pr assessment let us know how it all goes x x

  • When I found out that your organs can deteriorate with less oxygen I was actually looking forward to going on it. Although I have been diagnosed with very severe emphysema I am only on half a litre for at lest 15 hours. I have ambulatory cylinders but don't find the need for them a lot of the time. I used it for the exercises at PR though.

    The best way to look at is that it is just another medicine to take. We get so used to it we sometimes forget I have it on.

  • You are right of course I think it was such a shock and I am much more positive that this will help x x

  • I had the walk test for PR and my oxygen went down to 79 !!! it was a paticularly breathless day ... the nurses monitored and good news - only down to 90 afte 10 mintes on teadmill now ,,, chest consultant says I do not need oxygen ... when breathless, pace rather than push yourself I was told at PR ... best tip ever for me.

  • That's interesting thank you. X x

  • Tadaw,

    When i was discharged from hospital 4 years ago and prescribed O2 for 16 hours a day, I was traumatised and deeply depressed, but within a month I had come to look upon the oxygen as my best friend. It enables me to do things I cannot do without it. I can take my dad shopping, and fishing, go to the test match at Trent Bridge and next weekend attend the Coopers Tavern beerfest in Burton with my BLF friend Gordon57 and live as near a normal life as is possible with this horrible disease. I wouldn't be without it as my sats on exercise rapidly fall into the 60's. I just think you should give it time and it will be worthwhile. For your sake I just hope you don't get lumbered with Air Liquide as your supplier.

  • It really isn't the end of the world. I too consider it my friend now. I am on it most of the day and night. I was getting I couldn't get out I was so breathless but now I can walk round the supermarket no probs. I am on 2lts. I have a little rollator and my oxygen sits in the bag at the front. Please don't despair. M

  • Thank you so pleased to hear all the positive replies x x

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