Ask a silly question and get an answer you don't really want!

Saw my consultant yesterday at my local hospital. I see her every 6 months and my consultant at Newcastle every 4 months. It was just a check up and a chat about how I am feeling etc.

I told my consultant about the swimming and joining a gym and undertaking gentle exercise on the treadmill and exercise bike. She was very pleased about this but then I mentioned my concerns about my O2 levels dropping when I exercised and the knock on effect this might have on my heart. It was at this point she mentioned having a 6 minute walk test to see if I needed oxygen when I exercised. This has sort of knocked me for 6. I know I will be rubbish at it and I really don't know if I can bring myself to use the oxygen at a gym if that is the case.

I know this sounds ridiculous and really rather petty when I know so many of you struggle on a daily basis and use it all the time but to me it represents a further step in my demise due to this bloody awful disease. And a step closer to possible transplant (I have yet to decide if this is a path I wish to follow).

I know I am going to fail the test and be put on oxygen - just feel like all my hard work trying to keep as well as possible has been in vain.

This is the post I typed the other night which I promptly went and lost.

Just feels better for writing it down.

Marie x

10 Replies

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  • Hi Marie,

    Im sorry to hear about your concerns.... :( . My take on my COPD is to take a leaf from a guy from the BLF DVD and say I have COPD it does not have me, food for thought. I gave up fighting myself a while back....lol

    Chin up.... :) .

    Gary

  • Hi Marie,I so get were you are coming from here,i have had oxygen at home now for a number of years but kept not using it,because to me it was 1 more nail in the coffin,I didn't realize then that i could be damaging my heart by not using it!. Every time i go to see the medical people i nearly always come back with negative results,which makes me mad and sad ,when i know i'm trying so hard. But now I am trying to live with everything,and make the most of it all.well done on your health regime :) you will get there lass x

  • Marie, it is not the type of test you can "fail". It is not really a test at all, more of an assessment to check on your O2 levels when you are mobile. If your saturations are dropping below a certain level you need supplemental oxygen. However, rather than looking at this as a negative, think of it positively. You are being assessed. If your body needs another prescription (in this case oxygen) the hospital will supply it. It is only really like having to use an inhaler or take certain medications. And sometimes it is only for a set period until things improve. Chin up. xx

  • Marie I reiterate everything Stitch says. I can enjoy walking round the shops again, getting out much more and feeling generally stronger thanks to my 02! Good luck

  • Hi Marie. I too struggled to come to terms with having to use oxygen but am now i am very glad on occasions to be able to reach for it. I remember a friend once said to me "don't look on these extra things as disability aids, look at them as ability aids." once I started to see things from that angle I found it much easier to accept to adapt. Best of luck.

  • Thanks everyone for the reassurance. I can get about fine and do a fair bit of walking so I'm hoping that the O2 will only be for exercise (if I need it). I know I can't fail the test but I was always a bit of a swot at school so I don't like the thought of not being good at something! I'm the same with lung function tests!

    I know if I need it it will be a revelation but I also know that for me it will represent a step closer to a possible transplant.

    I know I'm jumping the gun but I'm struggling with this. Thanks again though for your lovely replies. Marie x

  • This year I reached the stage I had to use ambulatory oxygen. See my blog on this subject at bitz-and-bobz.co.uk/copd/20...

    I knew I should have been using oxygen for quite some time before I was prescribed it. But like you felt it would be 'another nail in the coffin'. I would push myself constantly, knowing that my sats were often in the low 80's for hours at a time when out. Last summer the crunch came. I pushed myself for several days in a row, during a warm spell, and in the end felt so very ill that I felt as though I was dying. I knew this was not an infection. It was something deeper. The worse was, deep inside I knew what my problem was. I was damaging my body, my cell regeneration, my bodily functions and organs, by pushing myself with low sats all the time. So I mentioned my problem and was referred for the 'walk test'. I was amazed, and upset, to be put onto 4 litres, not the usual starter of 2. Because of course I had been putting it off, until I was feeling very ill. I admit that even though I am a man, to some tears. In due course my oxygen was delivered and I started using it. Slowly, over the next week, I felt normal. I felt well. I was overjoyed. As the following week passed, I started to feel more energy, and started to become more active. I wanted to get out and do things. I also learned that using oxygen in fact saved my life. That it gives me the ability to lead a more normal life, that I will because I am willing to use it save my heart from extra stress. And mean I can live many more years. Yes it is an adjustment. My grandchildren take no notice of Grandpa with my cannula on. I explained it was 'my medicine'. Yes you can choose not to use it. But you will find you will feel so much better when you do. As for the Gym. I go everywhere with my oxygen tank, and use it. People soon get used to seeing ou with it. And remember, it is your life, your health. And it is what you need. Not the end, but the start of a new life:-) Please read my blog about when I started to use it, and how I got on using oxygen.

  • Looking at your story the swimming that left you disappointed around 600m has every reason that oxygen is not for you yet as others have passed the message that when you need it the fear is removed. Only glad to have oxygen when it was offered, think positive on the best for your lungs.

  • Hi All,,

    I must say you are an inspiration. I had a walking test and like you say there was no pressure just a slow walk whilst being monitored at the Brompton, I too was mortified when they said that my stats had dropped dramatically and that I could lead a better life on 4 litres, they said there was no pressure it was up to me but that I would benefit by using the oxy during exercise and walking. I have fought this for about 6 months but I am now slowly getting used to using it, I found I was so embarrased and felt like an alien who had just landed. Reading how you all deal with it has helped me more than I can express. Thanks a million

  • Hi all I have been on O2 for 2years now ,Me and teddy the tank go out shopping seeing grandchildren ,living a normal a life as pos .I tell children who look at me and teddy that Bud Lightyear as lent me his tank as a need a little help and they think thats great it works for me .I was given oxygen after a chest infection the infection had gone but I just could'nt breath when I stood up and tryed to move about .my level is 3/4 lit on standing and moving about so I use about 7 hours aday but I am not on a condencer I have liquid which I use all the time and if I run out I have (portable) CD tank which I call Bud lightyear as back up .I hated having to use it at first ,I had just started wearing glasses at the same time aswell and feel that wearing a bag over my head would be a better idea .No point in wearing makeup cant see it the tube just rubs it off ,If my eye water my masara runs great .And then my daugther tells us she's have a big wedding and I am going to be mother of the bride with oxygen .Panic was 'nt in it I cryed and cryed I was'nt going to use it I could get from the car to the church door ,then to my seat ,and the same getting back to the car ,Oh no the photo's standing about trying to mix with people I would'nt know .

    And then I stopped and remebered My Darling Dad had died back in 1982 with emphersema just like me he could'nt breath but oxgyen was not given back then for poeple like us ,he did'nt have a heart problem but had a heart attack and died had he been using oxygen would not have had the heart attack he was 57 just like me .I got myself a big expensive deginer bag for teddy to go in for the wedding make up that stays where its put and Dam what anyone thinks or says .I find more people say wow it's so good to see oxygen beeing used out as most stay at home sitting watching tv Its my life and I want a life to live .thanks to all the dedecaded nursees ,DR 's ,resp staff that we have here in the uk and our beloved NHS we are making ours lives bearable

    when my Dad dieded in 1982 he had a ventoling pump and bottle of Benaline ,and a paper bag and that was it .I have three pumps ,pills to keep airway relaxed ,anti botices ,stetiods ,A breathing nurse at the end of a phone and now teddy my friend .

    dont be scard that you need oxygen be proud that your lungs are that unwell and you still cope and you are also helping other be pushing ahead for better treatment more reseach .I am proof of it I am now on the lung transplant list and am so very lucky my dad would be empressed in 1982 transplants were not in any treament .we are so lucky take care and use your o2 x

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