Oxygen Therapy

[Munster12]

Hi, I am new to this, was diagnosed with COPD last year. Had a review a few weeks ago and was referred to Respiratory Team. Last week was put on home oxygen therapy, via concentrator in bedroom through the night. Visited yesterday and now need it all the time, so now have concentrator downstairs and have portable cylinders for outside. I suffer with anxiety as it is but feeling very afraid. Can any of you lovely people help reassure me............. please ??

[sassy59]

Hi Munster, welcome to the forum. I’m sure someone will be along to reassure you. Some of the members use oxygen so you’ve come to the right place. Xxx

[CDPO16]

Hi and welcome Munster. I have ambulatory and short burst oxygen. Is there anything specifically frightening you?

[Munster12 in reply to CDPO16]

Hi, thank you for replying. Just feeling overwhelmed, I suppose. Thought I wasn't doing too bad just on medication. Seems my oxygen levels drop very low when doing anything !! At the moment, just feel being on oxygen is going to be so restricting, I an not quite 63 yet

[CDPO16 in reply to Munster12]

I can understand how you might feel restricted, especially with the concentrators. I assume that you have enough tubing to be able to walk round the house linked up to the them. To start with think of it as another medicine, which is what it is, prescribed to maintain adequate blood levels of oxygen to ensure that your vital organs receive the amount that they need. I think that you need to allow yourself time to adjust to this new treatment.

I have a variety of equipment including a free standing cylinder in my bedroom with enough tubing to allow me to get to the bathroom attached to that. I use it while getting washed and dressed. I have a concentrator in the lounge for short burst oxygen which I am needing to use more often now but not constantly yet. I also have a walking aid which carries an ambulatory cylinder for when I'm walking indoors or for when I go out.

You will get used to it and hopefully feel better for it. I was surprised how much better I felt when I first started using ambulatory oxygen and how much easier it was to walk out with it, using my walking aid too. I can honestly say that no one has taken much notice of me when out apart from children but they just have natural curiosity.

There are other members on the forum who use oxygen, some have done so for far longer than me and may come along with their reassurances. In the meantime be patient with yourself and I hope that you will adjust and be glad that you joined our friendly forum where you can always ask questions or voice concerns. Best wishes to you.

[O2Trees in reply to CDPO16]

What a lovely reply CDPO16.

I use ambulatory oxygen Munster16 and would be lost outdoors without it. I feel especially sympathetic for folks like yourself who has been diagnosed and put directly on full time oxygen (if Ive understood right). You will be shocked and scared but you will get used to it, I promise.

It's correct that oxygen is basically a medication - think thyroxine for underactive thyroid. Similar thing, your lungs arent working properly with getting oxygen into your blood and need help which the supplemental oxygen gives. Do come back with any questions you have, and I hope you are able to enjoy christmas. Take care.

[Oshgosh in reply to Munster12]

it took me a while to get used to oxygen ,I thought people were staring at me.

Now I don’t care,it means I can get out And walk and go shopping.

If you’ve got worries,just post on here.

Be very kind to yourself xxx

[Karenanne61]

Hi and welcome. I don't have experience of oxygen myself but pre covid I met a lovely lady at the gym who was on oxygen permanently. She carried hers in a backpack which sat beside her when she was on the equipment. She did lots of fun stuff. I hope the wise ones answering you have allayed your fears a little.

[Alberta56]

When I did pulmonary rehab there was another man attending who brought his oxygen along on a trolley thing. He seemed very determined to get the best out of the course. I hope when you have got used to managing all this new gear you will find it helps you to lead as full a life as possible. Good luck. xxx

[Patk1]

Welcome to the forum.im sure you will adjust to your new normal.our goalposts r forever moving.its a positive to b given the 02 u need.do take time out to relax and b kind to yrself while u settle into new routine x

[GD53]

Hello Munster 12. Welcome to the forum. Just joined recently myself but they are a good, informative bunch of lung buddies 😀 Can't help you with O2 therapy but please ask about any little thing and someone on forum will help.

Would imagine its scary for you at present but through time I'm sure it will enrich your lifestyle and become routine for you.

Best wishes and have a lovely Christmas 🎄 Dee. xx

[Zand60]

Hi there, I was diagnosed with emphasema last year and spent a week in hospital. My sats dive down to 60-65 if I so much as think about exercise lol. I have the small oxygen cylinders at home to get me up the stairs and i also have the Inogen, which gets taken everywhere with me. I have a walker that my Inogen sits on as it is too heavy to carry, my arm aches after a while, and hubby can't get to grips with the length of tubing.. he has been called some colourful names at times!

I was consious of having this macine but as it was in the time of covid and I wore a mask not everyone noticed it. I still wear a mask in the supermarkets and crowded areas. I do sometimes get anxious but not when i'm with family and grandchildren. I still want to be active so try to ignore the looks.

[BusterMovers]

I fully understand what you are saying. I too have oxygen therapy and I suffer with awful anxiety, it stops me doing so much, I’ve now lost muscle in my legs so unable to walk, but I’m hoping my medication for anxiety will start to work

[JulyAugust]

Dear Munster12, I used to be frightened to go out of my home or downstairs at night to get a drink as my breathing got so bad and I was literally gasping just going from my bedroom to the bathroom. I had to go up our staircase three steps at a time. I was even thinking of getting a stairlift. I then did a pulmonary rehabilitation course which strengthens the muscles and improves breathing. Now I live a normal life…I exercise three or four times a week, weights and treadmill and even starting Zumba classes. You may not think you can manage it but even if you do twenty minutes four times a week you will see an improvement after a month or two. My FEV1 rating is only 35% so very low. I hope you will try and exercise even if just from sitting position…there are some sitting exercises for those with COPD on You Tube. Please check them out. I so sympathise with you and I know what it’s like to feel afraid due to shortness of breath. Sending you my best wishes and lots of virtual hugs 🤗