Hi I joined some time ago,don,t post much but enjoy reading all the topics,anyway I have been
accepted for the pulimnary rehab course which is good news,the bad news is they say I need
to be on oxygen when excercising or going out don,t have to use it indoors.
Part of me is trying to look on the positive side of what I can still do,but another part
is wondering if this is the beginning of the end,i was diagnosed with severe copd about two years back.
I was diagnosed with very severe COPD four years ago. I am on 1/2 L/ m oxygen. Probably 1L/min on exertion. My COPD hasn't got any worse since then. Just look as oxygen as medicine. It's mainly to keep the organs healthy. It's not the beginning of the end. It's just the beginning of a new way of life. So please don't worry.
I did not know we could use only 1 L . When I was out yesterday I was noticing that the end of the O2 can seemed to be quit enough and was thinking I will try 1 rather than 2 for short walks etc. Now I think I will. I measure my O2 to see how it is going.
Hi
I also had to have Ambultory oxygen 2lpm for exercising and moving around.
As you I was assessed at pulmonary rehabilitation class later confirmed by oxygen team at local hospital.
I go Assement every six months.
Just treat it like any other medicine.
It is only to maintain your oxygen saturation at a acceptable level.
Below 88% for long periods and you can cause damage to other organs.
I am with the others it is a help and precaution to keep the other organs healthy.
Thanks for your replys,it just comes as a bit of a shock,also how do you carry it,the
woman who saw me said they are heavy but did,nt explain anymore,i should have asked more questions but was in a bit of a tiz.
Hi
Have you had your oxygen assement usually a six minute walk test, this will determine the amout you need, you can then discuss suitable equipment, normal cylinders they weigh 3.3 kg but come with a bag and trolly. Liquid oxygen uses flask weigh between 2.2 kg and 3.7 kg depending on type used, these are normally carried, over the shoulder or across the chest.
There are portable concentraters, these can weigh upto 7 kg but come with a trolly and not really suitable to be carried.
It is important to discus your needs to find the most suitable.
You will probably be offered cylinders make sure you ask for bag and trolly.
Yes had the walk today all she said was she,d be in touch when she was bringing it
round,i guess I,ll have to wait and see what turns up
Hi Malie. I am doing my second PR course with nine others. Four of them use oxygen and I also use it at 2 litres a minute when exercising. It's nothing to worry about and you soon get used to it.
Bobby
I'm almost sure it will give you a new lease of life Malie. I think I'm pretty much at the same stage as you and was sad when my PR ended in February. I did it while on oxygen and with a wheelie walker! Felt great afterwards. Go for it!
Sara
Thanks all, I,ll let you know how I get on,i know it sounds a bit mad but I rescue
wonky dogs,at the moment I have a little blind Chihuahua he,s the one in the photo ,another chi with wonky back legs,two tiny poms and a chi who is terrified of
going out,so I have a pet stroller to fit them in, perhaps I could put the oxygen in
there as well.
They provide a bag to carry it but if you can put it in the pet stroller do it thats a great idea as they do weigh a bit......i have to be honest im confused about why you have to use it when your out but not at home,, if your struggling then surely doing housework etc you would need it too...
You will soon get use to it most of us on here are on it x x
Now if only you could teach them to use it 
x
Good morning Malie, Ask your oxygen supplier for a back pack to put your oxygen in, give it a try,you may find it easier than a trolly. Good luck, Regards, Bulpit
I think Puff explained it beautifully Malie, I hope the oxygen makes you feel much better. xxx
DO try to be positive. My husband was diagnosed exactly as you - started oxygen 18 months ago and it has changed his life. We can do lots more, he can walk further !!! I remember feeling pretty devastated when he was told but I couldn't have been more wrong. You can get some of your life back! The very best of luck TAD xxx
It is a lifestyle adjustment but not the end. I've been stage4 for 3 years and went out and purchased an oxygen concentrator. I still go to work, shopping and travel by train or auto without a cylinder. Works on rechargeable batteries or standard house power. No heavy cylinder to worry or fuss with. The nose cannula takes some getting used to but that passes quickly. The critical item is that it keeps the rest of the body healthy because of the blood oxygenation. Stay active as possible, mentally fit (this website is great) for information and smiles. So please SMILE!
I thought the portable ones only went as high as 2 litres
I have an Inogen that goes to 4 and Respironics makes a 5L but it is extremely heavy. My Inogen is 6 lbs with the smaller battery and 8 with the larger one. On settings for 2L I can get about 6 hours on the large battery. I had a rented Respironics but it was 14 lbs and noisy so I did a lot of research before buying. I use a shoulder strap to carry mine around. Lots of other models out there so go with a higher capacity unit so you have enough when you need it. I sit most of the day but during stress times or walking I use 3L or 4L depending on how i feel. Btw. I am a computer engineer so i don't work for any of these companies. I can send a link to a couple of sites later in the day if you wish.
I'm on 4 lts and my nurse said they would be no good for me due to that so i didn't even look at any but the airsep focus is so small it would be sooooooo lovely not to be connected to this tube all the time i feel like im on a dog lead....
I would definitely be interested in renting one if it wasn't a ridiculous price so some links would be great
healthoxygen.com/portable-o...
portableoxygen.co.uk/?gclid...
oxygenstore.co.uk/?gclid=CM...
these should give you a start on the research. when I rented and did the math and determined it was cheaper to own (since I will use it a long time since I won't get better). Yes, a lot of money but it's mine. Also if you negotiate well they can throw in a home unit, in case the portable is in the shop so I got a home unit (on wheels 7L) ,Portable unit with 3 batteries, chargers, case etc. all for a reasonable price. Over the long term.
Thanks
Ive had a very quick look and i think i may have cried at one point.
You know the price is going to be scary when they ask you to ring them to find out how much it is !!!!
There are options, like reconditioned units but I made a choice to keep active as much as possible and still go out to dinner, walk the dog and drive to visit friends. The cost was not covered by insurance so it is financially challenging to put it mildly. I tried (rented a couple) to try out. I just refused to be housebound as long as I can. Stay strong.
Evening Mali and all,
I went onto O2 last September for when I go out and also if I am doing anythin physical around the house (like heavy duty dusting!). I was given a O2 concentrator by the hospital. Must admit that still getting used to being attached to the unit by power cables and a cannula a bit problematic if I forget or the grandkids whizz past. I'm not very good at organising my life but I'm getting better. I found that the battery only lasts about 45/50 mins while out, so I have been given 3 x 3 hour oxygen tanks with a trolley as well which it a great help when shopping or visiting.
Since having the O2 I have been gradually been getting out and about a bit more even if it's indoors and as the weather starts to brighten up I might even venture into the fresh air again.
Good luck, it does take a bit of getting used to but is worth while.
Regards,,Sue
Hi Malie: I can sympathize with your fear about using oxygen. I too suffer from severe/very severe COPD (diagnosed in 2006) at age 66. My oxygen saturation was OKAY except when exerting myself. Went on O2 2012 and it made a huge difference in my physical health but the emotional transition was very difficult. I am still here alive and kicking and ambulatory. When I was first diagnosed the doctor felt I would not last more than 3 years! I believe the oxygen therapy is the reason I am still here. I am very comfortable around friends and family while using my oxygen. I hope my story helps you . Please use the oxygen when exercising or exerting yourself. You will be protecting all your organs
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