Do you use oxygen? If so could you let me know please what litres a minute you are on when moving around if it is more that 4 litres a minute . Since 2012 I have been on 4 litres a minutes when moving around but recently, even though I am fine sitting still on 2litres a minute or with nothing, I feel out of breath when walking and my oximeter on my finger goes down from 97 when sitting to 84 after I have only moved to the toilet. I will of course ask the oxygen nurse what to do (I expect I will need to go to the hospital for an oxygen assessment) but I would like to know if people are on higher levels than 4 litres a minute. What is your lung condition (I have sarcoidosis) and what does your electric concentrator in the house look like. Do you have portable oxygen to take out of the house?
Do you use 4 litres/minute or more of... - Lung Conditions C...
Do you use 4 litres/minute or more of oxygen
I was diagnosed with Sarcoidosis in June 17, but got symptoms in dec 16.
I started oxygen in jan19. I was on 2 for ambulatory. Pretty soon it was 4 ambulatory and 2 for sitting. In August I got worried about my oxygen levels at night. More assessments. Level 2 all night and for sitting. Level 4ambulatory.
I go out a lot and they gave me an Imogen on a trolley that could last 5 hours. - much better than1-2 hour canisters. They upped the pulse machine (Imogen) to 5 but home converter still 4.
In December more walk tests and inogen was put to level 6( the top level for that machine.
I am waiting for a converter test now as this converter only goes to 5. The nurse says if I need higher doses they change the converter machine- no problem.
I asked the walk test person about the inogen as I’m now on top rate. He says they will move me to liquid oxygen which I am not looking forward to. I think he says each canister lasts 1 and a half hours., but I could have 6 canisters in the car. Very limiting!!
I am surprised at how quickly I have gone downhill. I eat sensibly and exercise. I have been affected by steroid withdrawal,
I’d feel rough, tight chest, a bit unwell, suspect chest infection, antibiotics and steroids given by gp or nurse. Feel ok then about 5 days after last steroids I’d begin with same symptoms. They tried different antibiotics, analysed sputum samples, all showing nothing. This was jan to September, but intense June to September.culminated in hosptital stay suspecting pseudomonas and intravenous venous antibiotics in hospital. I came out September with more antibiotics and steroids. When they finished, 5 days later, I could hardly move. Saw a gp and I said I suspected steroid withdrawal. He agreed. I’m now on a very very slow withdrawal programme. I as on 5mg mid September, I am now on 2mg. Every little decrease sends me more breathless, achy etc for quite a few days. The good bit is no apparent chest infection since September. I am getting a bit stronger too in the last couple of weeks.
The nurses will reassure you, that they can cover lots of different needs.
Good luck
Jo xx
Thank you Jo. Did you contact the oxygen nurse first to arrange an assessment by the 'walk test person' at the hospital? or did you have to go via the doctor?
I have been on 5mg prednisolone for several years.
I have 6 month reviews with consultant. They arranged walk tests originally.When I was worried about night time readings, I contacted the oxygen team directly . I told them the sort of readings I was getting and they asked me to come in that afternoon. They put me on to 24 hr oxygen. My consultant recently arranged 6 sessions one to one with a respiratory physio. I was hyperventilating a lot. She has helped me enormously.
Xx
I'm on 1l for sitting, not far off needing 2. I get out of breath going next door to make cup of tea. I've a long pipe on the concentrator, wish it had a remote. At the hospital on friday i walked about 30ft on 3 or 4 and my oxygen was down to the mid 80's. The nurses were a bit flappy but i said it was norma and back up to the low 90's in a few minutes. Going upstairs is bad, i get very out of breath on 5l. I'm not convinced the flow rate makes such a huge difference
So you say going to mid 80s when walking is OK for you. I thought we had to keep to above 88 to protect our other organs.
No it's not good but it's what happens. I only walk 10 to 15m. I used to go down to 70 on a 6mwt, i don't do those any more
I’ve been told as long as you recover quickly a low level, for a short period, is ok. I can drop as low as 79 but recover back to 95/6 in seconds. I use oxygen 24/7. 2 lt whilst sitting/bed and 4 whilst mobile. I’ve been told I can increase my Imogen to 6 if need be whilst out and about. I have a home concentrator, highest flow rate is 6. I’ve heard of others having two linked together to get a higher flow rate! Or did I dream that? Haha!! Joy.
Yes. I started out in 2011 with 4 litres; in 2019 I went to 6 litres while walking for six minutes. Since I need more while walking and I live in a house with stairs, my house oxygen concentrator can be set to any number between 4L and 8L. I turn it down to 4L when I am sleeping but up to 6L while I am going about the house cooking and such,
Hi sarcoid123 ,
I think you need an oxygen review. You've been on the same flow for eight years. You probably need a reassessment. Take care. xx😊👋
I use two but can’t go very far.
Hi i am on 4 most of the, time 24 7, if any activity my levels drop to 75. so increase to plan to move switch to 5 ihave sleep apnea and the oxygen is attached to the cpap machine, l very rarely go out,not since 8 nov2019 it causes so much agrevation, geting the cylinder full of liquid gas my hubby is not able to cope with it,
When I was on oxygen (Im no longer on oxygen as have had my op ,) I was on 2 litres ambulatory .
Best wishes Babs
I have severe emphysema with 20% lung function and use 6lpm when active and 1lpm overnight. Generally I don’t need Oxygen when sitting. I hope this helps. Good luck
Thank you very much to everyone who replied.
Hi sarcoid123
I started using oxygen 4 litres a minute in 2013 for Pulmonary Fibrosis caused by Lupus. I started to become very breathless on 4 after going out so the next time I went to the Respiratory clinic it was changed to 6 litres a minute after another walking test.
I use cylinders for going out and about and liquid oxygen for indoors. I decided I did not want to have a big bulky machine inside the house with wires everywhere and it is also noisy.
For church when I am leading the service I do take the flask with the liquid oxygen and I also take a spare cylinder (not a spare flask). I was at church yesterday for three hours and it last until I got back home.
Using oxygen hasn't prevented me from going on holidays including to the Caribbean. I have bought a Concentrator to use when i'm out of this country especially going on cruises. I use to pay for the oxygen in the cylinders to be delivered to the ship but now I can save that money to pay for the travel insurance.
If you think you need to be assessed again for the oxygen prescription to be changed please get in touch with your respiratory clinic and ask for a review.
Hope this is of help to you.
Keep safe, remain in good spirit.
God bless
Maureen
Hi, I’ve used o2 for years. My copd is listed as very severe. Showering from start to getting dressed can take an hour. I’ve always used 1 litre when ambulatory and tend to switch off completely when sedentary. My main use is kick starting in the morning and getting to bed at night. I get extremely breathless even after the most moderate “exercise”, eg, coughing, walking a few yards. Recovery is taking longer these days.
Oxygen - New user with many questions
OXYGEN LITRES INCREASED FROM 8 LITRES TO 10 LITRES
Dont panic.All I could think of was Corporal Jones.
