Through the last 10 years of staying positive with one health problem after another, the referral to the respiratory team for an ambulatory oxygen assessment has finally brought me crashing down to a miserable place.
Moving around has been a painful and challenging for some time and getting my walker in and out of the car is very difficult but I can just about manage it. The thought of also managing oxygen tanks and tubes is so depressing that for the first time in 10 years I just want to give up.
If I thought it would improve my breathing and quality of life I could just about bear it but my understanding is that it won’t help with that at all and will only protect my other organs whilst making my daily life and independence even more difficult.
i know lots of people use oxygen and I’m wondering if anyone has anything positive to say about it’s use on a daily basis?
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Bizzie
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I have the assessment at the end of the month. The letter said it doesn’t help breathlessness so I was considering declining it but I guess I should keep an open mind.
This sounds like a fair plan. At least I think you should find you can walk further before you feel breathless. As you already use a walker, hopefully you could use it to push an oxygen cylinder or concentrator around rather than worry about whether it is heavy to carry. You can also choose when it suits you to use the oxygen.
Thank you Patk1. You’re giving me a little bit of hope for the future. I’ve been very fortunate in staving off depression but this feels like the final straw. Maybe not though - I’ve been wrong before and hopefully I will be this time.
Hi Bizzie, I was on ambulatory oxygen for around 3 years and it certainly did make life a lot easier. Like you I use a walker and the cylinder sat nicely in the bag. Latterly I had a portable concentrator which was brilliant. Don't refuse it, try it at the very least and I'm sure you won't regret it.Unfortunately after having covid I am now on 15+ hours a day oxygen and am struggling with that. Good luck.
Thank you Maggity. I’m sorry Covid has caused you to need oxygen for longer. I guess I’ll get to that level at some point and like you will struggle with the change and I really appreciate you replying. The constant adjustments to being able to do less can be extremely frustrating and depressing but hope you still manage to have a reasonable quality of life.
Hi Bizzie, At the age of 47, after a very sudden illness, I was diagnosed with ILD and put on oxygen pretty much straight away as I was very breathless and my oxygen levels were dropping very low. I too was devastated and also felt like just giving up as it was such a huge change. I didn't use it at first as I was stubborn and thought I could manage without. Eventually I admitted defeat and the change is unbelievable. I still get breathless if I walk too far but I wouldn't like to imagine how bad it would be without my oxygen. My quality of life has improved massively. The cylinders can be a little heavy but you shouldn't have a problem attaching it to your walker so you don't need to carry it.
Thank you MonsterMoo. I’m so sorry to hear you needed oxygen so young and I can only imagine the huge adjustment that was for you. Like you I’ve been very stubborn about what I do and don’t need and I’ve always dreaded getting to this stage of my COPD . It felt like my life was ending when I got the appointment for oxygen assessment so really do appreciate the positive feedback from you. It’s already helping me feel less negative about the assessment in a few weeks.
Hi, i`ve nothing to add that hasn`t been said about oxygen, but to help with depression, have you tried meditation? There are some really good, free to use sites, to be found. If you want to try, let me know and I`ll ask my wife which ones she uses. Take care, there is always someone on here to help. Chris.
Hi Bizzie. You are right. It doesn't help with breathlessness but yes it ensures your other organs are not starved of oxygen. My personal experience is that it helped with fatigue somewhat. And yes, the cylinder and the tubes were a bit annoying, but I got used to it. I just had to make sure I left the house earlier to accommodate the extra time I needed to manage it. One suggestion I can make is to maybe get a walker that can hold the cylinder as well. I would urge you to try before declining the offer all together. I think it's worth it.
I can only talk from my own experience so here’s my advice to you. Don’t knock it till you try it.
I was overwhelmed initially in 2019 when I was suffering low oxygen rates on walking … (aged 48) took awhile for it to be picked up but cut a long story short was assessed and got set up with all the gear…
I’m not kidding when it all seemed surreal. In the weeks and days that followed came the arrival of tanks too big to move….to be used in case of power cuts at home. A home concentrator for use during nights when I had infections. Flasks as back ups should the refill portable system fail. Oxygen nurse and the oxygen provider area manager came out to visit to show me how it all works and to better understand my needs. Put all that aside then there’s the journey you have to push yourself through. There’s the gaining confidence taking your first step out the door.
But stick with me I am here to say that since then I have traveled extensively throughout uk pre ordering oxygen for the upcoming holidays and breaks away. Enjoyed many breaks away with family friends and my new boyfriend… after being single for many a years.
He doesn’t see the disability but the ability as the ambulatory oxygen (although has limits) certainly doesn’t hold me back. He jokes there’s 3 in this relationship- me, him and our companion oxy.
I can go shopping, see friends for coffee, house chores are easier but the hardest I usually get family to help out with… sticking a heavy basket of washing out to dry. If no one is about I make a couple of trips with a lighter load.
Ambulatory oxygen isn’t a fix all, by for me it helps get me out the door and sparks a little joy in life. Has kept me more independent and others are amazed that I take it all in my stride. The benefits are far wider than you may think at least for me they are: My only child my daughter recently flew the nest April 2024 with confidence I’m coping well… she had originally planned to travel earlier but put it on hold to care for me, which I told her there was no need… nonetheless she needed to see for herself. Four months of traveling and now settling in Australia, far from home but with the confidence and bravery and character developing skills to boot. I’m sure without the ambulatory oxygen she’d still be at home and maybe in years to come be a little resentful of the opportunity that she could have missed.
Please don’t knock it till you’ve tried it and let us know how it’s going.
Thank you for your lovely reply BreatheasyB. I hadn’t realised there was so much involved with the initial set up and if you hadn’t told me I think I too would have been overwhelmed and refused it all!
However, the positive comments from you and other members of this forum are at least making me realise I need to keep an open mind and at least try it. That is my usual state of mind but this was such a blow it knocked me for six and I was struggling to keep going. Thank you.
I can't offer any advice Bizzie but wanted to show my support. I know what it's like to be constantly fighting new health problems. You sound like a positive person and am sure you will bounce back at some point. Lisa France has advised meditation which could help and sounds like a good idea but would get help if you feel like you need it. I wish you all the best dealing with oxygen and am sure you will feel the benefits. Please keep us updated x
hi I felt the same as you when ambulatory oxygen was first mentioned (I have fibrotic hypersensitivity pneumonitis). But now I couldn’t manage without it…. It means that when I do anything physical like walking up the garden with the dogs or general household jobs I recover from being out of breath quicker & it’s not putting so much pressure on my heart. I have a small flask that I fill up from a mother unit & I am able to carry it on my back in a special carrier.
By the time I was offered oxygen my heart had already started to fail but for the first 3 years I am so glad I was. As I age and the lung disease progresses I can do less and must admit there are days when I want to say no more as I am almost housebound now but the help and support I get from various NHS teams is amazing.
Thank you Tykelady. I am already in heart failure so I guess the oxygen will slow that down but I too was thinking ‘no more’ when oxygen was first mentioned. However the encouragement from you and other kind people on the forum has at least made me realise I must at least try it before I give up.
Hi Bizzie, I agree with what has been said already. I was devastated when prescribed oxygen and thought my life was over. Actually, it has helped me be more active, lessened my tiredness and helped me be more confident about going out and about. 😊
Give it a go, you will get used to it very quickly and learn tricks to make using it easier. And you can ask us for our tips! I have found the help and support on here invaluable.
Good luck and don't forget we are all here for support 😘 xx
hi bizzie, I am at the ‘early’ stages of this horrible disease and I am already massively struggling mentally - feels like Iv lost so much already. I can only imagine the change to be going on oxygen
I’m sorry to hear that PW-R. It is a huge adjustment and I too struggled for a long time, even exploring transplants and alternative treatments until I finally had to accept my life had changed and there were now very unwelcome limitations.
Have you been referred for pulmonary rehab and is there a COPD group, either for exercise or support, near you? I found these incredibly helpful and supportive. If you’re in the early stages I’m guessing there’s still lots you can do and exercise/walking groups are invaluable for maintaining your abilities and delaying deterioration. Also, choirs or singing groups are very good for breathing exercises and that you’re doing them for singing and not for your COPD helps mentally I think.
I’m on ambulatory oxygen 2l an hour, my oxygen nurse told me it wont stop you getting breathless but it’s fuel for your body. Yes I still get breathless but I can mange to do more things, I can manage change the bedding and quilt cover without collapsing in a heap half way through. I stopped using a walker and now use a mobility scooter and now get out and about
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