My partner has IPF and has now been prescribed oxygen and I have some very stupid questions to ask so please bear with me.
He needs oxygen at night (0.5 litres) for which a concentrator will be installed.
1. How big is a concentrator i.e how much floor space do I need to find in the bedroom. They are coming to install it on Thursday and I want to know how much I need to clear up/tidy up to create enough space.
2. how close to the bed are these things installed
3. Will I be able to move the concentrator at all
4. Does it make a lot of noise at night
4. How do you sleep with one of these on your face/up your nose. He normally sleeps on his stomach or side.
Also he needs oxygen when active (2 litres). How heavy are the cyclinders. We are having normal and lightweight. We used to be keen walkers so the more he can get out hopefully the better he may feel. Are walks possible with oxygen cyclinders? He struggles a 100 yards before resting, will this improve or are we pinning our hopes to high on what oxygen can do for us.
Finally outside of winter I just use a gas fire to keep a single room warm to keep the cost down, can you use oxygen in a room with gas fire. I know oxygen and flames need to be kept apart but how far apart.
Sorry for being so stupid.
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carer999
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Hi and welcome carer999. My one is about 2 feet tall and quite bulky but you wont have to move it. The plastic tube can be up to 30 feet. Mine is quite quiet. As much space as possible should be made. If you have a spare bedrom that would be good; A nasal canula is used and rests up the nostrils. I don't notice it now to be honest.
Oxygen doesn't help you breathe better. It is to make sure the organs get enough oxygenated blood.
I have ambulatory oxygen cylinders which are quite light but I don't use them hardly and my larger one is for emergency if there is a power cut so I don't have to move it. I expect someone will be along to help you with that one.
Hi Carer, dont worry, the installer will answer all your questions, I found it an easy transition. My concentrator is placed in the hall downstairs, the hose reaches the bedroom upstairs with ease. The only thing that yakes getting used to is other people tripping over the hose I soon got used to sleeping with it, and no its not too noisy. I have a "homefill" where I fill my own ambulatory cylinders, I am so lucky as I believe they are in short supply. Yes they can be a bit heavy, but great if you have a scooter or a zimmer thing with wheels and a seat and a basket to hold the 02 ( sorry the name eludes me)..............thats it lol....a rolator!! As for the gas fire, I cant answer that but i'm sure you will be kept right.
Hi. carer999....not being stupid at all, we all have to learn to get used to these things.
If it concentrator like I have you should be given long lead [plastic tubing ] so the patient can move round home if necessary. would consider having concentrator in passageway downstairs or living room....they can be a little noisy. they don't take up much floor space.
and you wont have to keep moving it unless you want to. they are used with a cannula...
as tp the portable ones I will leave another member to help with, I havnt had mine very long.
hi, our concentrator is downstairs and the pipe goes up to the bedroom, but the noise is like a fridge, you get used to it being there and dont notice it, Richard sleeps satup so thecannula is no problem. the portable oxygen comes with a backpack, which is easier to carry around, 2l lasts about 4 hours. We havent had the gas fire on all winter and have had the central heating on all day but not at night, just got the bill ,, all I can say is thank goodness for the heating allowance. don't worry it will all be normal to you soon, we easily adapt do we carers. x
I keep my concentrator well away from me at night as it is quite noisey. It kind of rumbles and pops but you do get used to it. When they install it they will give you a long hose that will reach all around the house. Ask for two hoses/pipes, one that can be used and fixed safely for upstairs and the other for downstairs and to get out and down the garden as I do. My concentrator is on wheels and easily moved around, it plugs in to your normal 3 pin socket anywhere in the house. Walking has done me a lot of good so I would recommend it but start with small distances and increase slowly and listen to your body. It is ok to be out of breath but if you get chest pain then back off and get it checked out by your GP. He should be OK with a gas fire as long as he dos'nt light it and stay's 2 metres or so away at all time's. Some of the people on this site have open fires and wood burners and seem ok with it. A lot of it is common sense. Ask them about a fire risk assessment. I had one done recently and 2 nice firemen came and gave me a lesson on fire safety and also fitted 4 smoke alarms free of charge. Good luck carer999 and best wishes to your partner, keep him exerciseing,it really does help! Oh yes naisel specks are better than a face mask for sleeping as long as he is a nose breather.
I'm afraid that portable oxygen is no miracle cure to breathlessness but they certainly do improve the distances you can walk and your recovery time is quicker. The secret is finding the speed you can go at without your oxygen levels dropping to low. A steady pace right from the start is what you need to do. Keep to the flat and avoid hills as much as possible and hopefully with time you'll be able to cover quite long distances. In cold weather it pays to wrap the oxygen pipe around your body as this keeps the incoming temperature higher, up your nose. There is an attatchment which can be added which only allow's oxygen from the cylinder when you breath in. This increases the time a cylinder will last to at least 6 hours or more on 4 litre's of supply. I have 6 portables at home and use them all the time. Dont worry about people stareing as they certainly will, You very quickly get used to it and sometimes even have a little chuckle to yourself. Kids of course find it very interesting and are not shy about showing it Ha Ha. Once again good luck,you'll soon be an expert like the rest of us.
You are not stupid at all for asking questions, we have all been there at some point and on here we all learn from each other, so ask away ok.
The concentrator is not too big at all, imagine a bedside cabinet only wider, like two side by side. You need to leave space all around it for the air flow and it must plug into its own socket, it can't be used in an adapter. All the information though will be in the booklet that they give you when they deliver it so please don't worry. They will also tell you all you need to know. Depending on you, you could move it around. My mother didn't have the strength and struggled with it, for me it was no trouble. They can be quite noisy, again depends on the age of it. Dad had really old ones and they were a right pain. When we went on holiday they were soooo quiet it was lovely. Other people I know who have them, theirs are quiet too, just a little humming like amagran said and you get used to it.
Being on a low o2 level, hubby should be perfectly fine using a cannula as opposed to the face mask. Trial and error, see what he prefers. The BLF say that if you have alung condition you should have a constant temperature both day and night but dad didnt like the heating on at night so up to you really. Mum n dad had a gas fire too and as long as dad didnt go near it there were no probs. The information book will tell you to ring the local fire department to arrange a home visit and they will do an assesment in your home and give you advice too.
Just because hubby has oxygen cylinders, please don't let that stop you going out. You will need to adapt and make arrangements accordingly but you will learn as you go along and work out what suits you best. For example, when you go to the supermarket, if he walks then he can put the cylinders in the trolley. They come in a backpack and generally they give you one but ask for more if it helps. Going out walking he will wear the backpack on his back and at 2lpm that will last him a few hours like amagran said. Take spare in the car. They are not that heavy but again, my mum couldnt manage them so depends on you.
Hope we have helped carer999, again, please ask away if you want to know more ok.
Hi there, you seem to have most of the answers you need but here are mine as a Carer of someone with COPD who has been on oxygen for many years.
Whatever you do have the concentrator situated downstairs, reports of the noise are not exaggerated - the provider will cable it upstairs for you. My husband has a switch on the landing to change the supply from downstairs to upstairs.
He is now very weak but still likes to go out so we also have a portable concentrator which is very useful in the car on long journeys but at £4000.00+ it's quite expensive however, can be used for plane journeys or cruises.
He mainly uses Liquid Oxygen. We have a Mother Hub which is filled every 5-6 weeks and is stored securely outside. He fills the portable unit daily and it lasts for up to 12 hours at 1.5 litres per hour. It is a small container with shoulder straps and is light-weight and best of all discreet as it doesn't have OXYGEN emblazoned on it! Perfect for walking - a lot smaller than a ruck sack.
We have large cylinders of oxygen for emergencies ie power cuts - just remember to have a torch near by to hook the patient up quickly if the alarm goes off during the night.
Whilst the cost of running a concentrator may seem very high we are refunded by our provider by cheque which negates the expense.
As for sleeping position you can choose how you wish to sleep. The tubing from the concentrator has a nasal cannulae on it. Make sure you ask for plenty spares so they can be changed frequently to avoid infections. We actually purchase our tubing from the US because they are softer & don't tangle up easily but for sleeping there is a short length of the standard tubing so he doesn't roll on it & set the alarm off.
If you have a Breatheasy group near you you might consider joining so you can discuss with others in the same situation as you. They usually meet once a month and are very sociable.
I hope this response has been helpful - good luck Mojo1
I have found my oxygen physiotherapist very helpful. I have been told to phone if I have any questions. I also find the oxygen provider very helpful. They explain the use of the machine and are very willing to listen to your questions.
Do you know if once installed a concentrator can be moved as get the impression some are noisy some are not so until it arrives I don't know where to put it. If it is noisy I would want it in the hall and piping attached to the wall going up the stairs to the bedroom. But for this to be possible I would need to move a large heavy item from the hall first which I can't do before the oxygen company come.
I was hoping the concentrator would go in the bedroom but that does not sound such a good idea now.
Can I go back to the oxygen supplier to ask for a move if the location is unsatisfactory or is it a decision once made that cannot be changed.
I did look out the details for my local Breathe Easy group but it meets in the day time and I work full time so I couldn't join them.
Full time working combined with being a carer is not easy and I have so much to learn and I assume the demands on me will only increase.
Hi, we have all had to go through the same learning process, there is lots of help and information out there which I am sure you will find, given you have already taken the first step in joining this site. Your cerntainly not stupid, frightened may be but there again we all are or have been. So these things I do know for sure, oxygen should be kept 3 metres/9 feet from naked flames, the light wieght cyinders are light weight,( I carry mind in a small rucksack ) its less noticable than the one they give you and you can carry a drink or additonal clothing. Being a keen walker is a real advantage, walking is the best form of excirse either outside or on a tred mill, its best if you can walk fast enough to raise your heart rate. If you go onto youtube and enter Dr Noah Greenspan the Wellness Centre New York he gives the best information avaiable about breathing and excise.
You need to see how things work out by trial and error, see how far your husband can walk with a degree of comfort on his present Oxygen prescription, (2 litres) is failrly low, if he stuggles INSIST on a follow up 6 minute walk assessment. Once he is used to using oxygen to get about he might ask to be tested aagin for pulse O2 which extends the llfe of the light weight bottles to around 6 hours,
hope this is helpful good luck and good health to you both.
Hi, we have all had to go through the same learning process, there is lots of help and information out there which I am sure you will find, given you have already taken the first step in joining this site. Your cerntainly not stupid, frightened may be but there again we all are or have been. So these things I do know for sure, oxygen should be kept 3 metres/9 feet from naked flames, the light wieght cyinders are light weight,( I carry mind in a small rucksack ) its less noticable than the one they give you and you can carry a drink or additonal clothing. Being a keen walker is a real advantage, walking is the best form of excirse either outside or on a tred mill, its best if you can walk fast enough to raise your heart rate. If you go onto youtube and enter Dr Noah Greenspan the Wellness Centre New York he gives the best information avaiable about breathing and excise.
You need to see how things work out by trial and error, see how far your husband can walk with a degree of comfort on his present Oxygen prescription, (2 litres) is failrly low, if he stuggles INSIST on a follow up 6 minute walk assessment. Once he is used to using oxygen to get about he might ask to be tested aagin for pulse O2 which extends the llfe of the light weight bottles to around 6 hours,
hope this is helpful good luck and good health to you both.
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I soon got used to sleeping with it, and no its not too noisy. I have a "homefill" where I fill my own ambulatory cylinders, I am so lucky as I believe they are in short supply. Yes they can be a bit heavy, but great if you have a scooter or a zimmer thing with wheels and a seat and a basket to hold the 02 ( sorry the name eludes me)..............thats it lol....a rolator!! As for the gas fire, I cant answer that but i'm sure you will be kept right. 
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