I find the portable cylinders for going out too heavy to carry. Because of this my Respiratory oxygen nurse has prescribed an Inogen for me . The engineer from Baywater called to collect the 2 portable cylinders and drop off the Inogen.
I was surprised how heavy the concentrator for the Inogen was and then the battery had to be added. I did not wait for it to be put together and have a demonstration as I was disappointed at the weight. I said I didn't want it ,so he left taking the Inogen with him.
I am now regretting my decision as should have waited for it to be assembled and have a demonstration.
I need to know if the Inogen is lighter than a cylinder also I'm confused on the delivery of oxygen. . Apparently it's bursts of oxygen when you breathe instead of a continuous flow you get from the cylinders.
I did not like the engineer as he was not helpful and was in a rush to leave. He was in ny house about 10mins and then left.
I was upset after the engineer left and my Respiratory team called to see me and are annoyed with the engineer for being so negative and not giving me a proper demonstration so I could decide.
I need advice from anyone who has an Inogen , are they lighter than the cylinders and as effective with the flow of oxygen.
Baywater are sending a different engineer to demonstrate as the last one was really in a rush to leave and therefore didn't want to demonstrate it for me.
Hope I'm explaining what I want to know as I am confused myself.
What scared me was the thought of them taking my cylinders away and then I was not satisfied with the Inogen
I am finding it hard to accept I am now on oxygen 24/7 and will be for the rest of my life.
I have not left my house for 8 months as I find the cylinders too heavy but I am not 100% the Inogen will be right for me.
Any advice would be appreciated before an engineer from Baywater calls again.
Thank you xx.Sheila
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I'm not in a good place at the moment Carole. Really depressed and got to the stage after 8months of not going out, I'm scared to leave the house.My Respiratory team thought the Inogen could be the answer but the engineer was really not a nice person at all.
I'm back to square one ,as was excited at the thought the Imogen was the answer to me going out.
I'm so confused with it all its causing me anxiety and panic attacks.
I have both, cylinders and inogen . The inogen is quite heavy . Not as heavy as a full cylinder though . I think there are lots of different types of trolleys which you can use to pull them along with you . I am on holiday in November so I am going to try a small portable fold up wheelchair and see how I get on . I only need ambulatory oxygen at the moment . I’m sure your oxygen suppliers will help you to get the best care you can get 🙂x
I am so sorry to hear about the unhelpful technician. I do wish they'd realise when they visit our homes it is usually at a time when we are having to face big, and unwelcome, changes in our lives. A little bit of kindness would go a long way.
I use an Inogen 3 concentrator for ambulatory oxygen.
I found liquid oxygen cylinders the lightest to carry but they were only good for an hour or so at 3 lpm. I then moved to normal oxygen cylinders which I found heavy and unwieldy. Finally tried the Inogen which I get on with quite well. It is too heavy for me to wear over one shoulder but I use it in a backpack and that works well. Having said that I am 5' 3" and quite 'sturdy' in build. I know from your lovely shopping photos that you are much slighter.
The Inogen is a pulse supply. In other words there isn't a continuous flow of oxygen, the machine releases oxygen 'on demand' as you breathe in through your nose. This works well in an ambulatory situation - not sure how you'd get on with it whilst sleeping.
Would your oxygen supplier consider letting you keep your usual cylinders for a couple of weeks as well as the Inogen until you can make up your mind which is best for you?
I won't be using it for sleeping. I have my concentrator which works of electricity for indoors The Inogen is only for going out..Yes I would be happy if they left me only one cylinder until I made up my mind. I am on 3L when active and 1L when resting. I don't know what model I was shown
Thanks for your reply really helpful. Have a nice day xx.Sheila
What I don't understand is why they took your cylinders. I have a Philips Pulse concentrator, as well as my regular steady flow model for at home which I use at night for sleeping and not so much in the daytime, unless I take a nap. I take my portable Philips when I go out, unless I'm only going to be gone for a short time, like an hour or so! I'm on a setting of 2. My Phillips only gives me about 2 1/2 hours usage before I need to recharge it.
However, all that is beside the point that I am trying to make and that is, that I have 6 large cylinders which I keep on hand in case of a power outage. Shouldn't everyone be allowed to prepare for an emergency situation when there is no electricity available? I would insist on it! Everyone who's on oxygen should have a back-up! I did have to argue a bit, but I convinced them of the necessity!
I don't want to moan about Baywater to much but I think they need to review the way they deal with people. They NEVER inform me when they going to maintain the concentrators, they just show up. And yes some individuals are not very helpful.
I had a similar experience, my supplier is BOC. My oxygen nurse prescribed supply Inogen and remove ambulatory cylinders at the same time. I refused this and negotiated with the nurse to keep one cylinder so I could compare. I find the little noise the Inogen makes when I breathe in a bit annoying but it is definitely lighter so, after my comparison, I kept the swap. I weighed a cylinder as 8lb and the Inogen One G5 as 6lb. So still quite heavy but definitely lighter. There is a lighter Inogen One model but it only lasts a short time before recharging, and I don't know if the NHS would supply it. Please also read my post about getting a trolley or cart for the Inogen. This is lighter than the oxygen cylinder trolley and much lighter than a rollator, all of which seem to be around 5 Kg. There are also backpacks available for the Inogen (look on the internet). I found I got a bit breathless when lifting the trolley and Inogen into the car but otherwise it was very helpful for my recent health clinic appointments. I find hospital corridors and stuffy rooms difficult these days.
I agree,most are lovely and helpfull but when I saw the engineer getting out of the van my heart sank. He had been before and was really rude. I was on the defensive the minute he entered my house . He is such an arrogant man. My Respiritory team are putting a complaint in
I don't know for sure if I will get another opportunity for the Inogen as apparently it is £50 for the visit when they come with an Inogen. As he didn't demonstrate and was only here 5mins that shouldn't apply ,but fingers crossed. XxSheila
So sorry you've had this unpleasant experience. No wonder you felt confused. I hope the next engineer will be a pleasant one and will hopefully find a solution. It would be nice to think of you out and about again. Lots of love, Chris xxxxx
I don't think I'll ever leave the house again Chris. I am having difficulty accepting the 24/7 oxygen. The canular on my face continually is driving me crazy.To have to go out with it also is something I can't face. Causing me depression,anxiety and panic attacks.
Hang on in there Sheila.maybe try a mask to have a break from canula at times? Can u perhaps do mini steps to start with - have a coffee at the back door,with it open,look out over the garden,get some fresh air.That can be Yr starting point.we all feel better listening to birds, trees blowing.
Maybe start rereading " the secret", it motivated u before x
Dear Sheila, I find that once I am out of the house I tend to calm down although I'm always glad to get back to the security of my mains concentrator. It's the performance of leaving the house as I live in a block of flats with heavy fire doors and until I can get to my walker which I use to transport my cylinder whovere is going with me has to walk behind whilst I make stately progress four paces in front. I know you are a lady who takes great pride in your appearance but please do consider some kind of walking aid which will also transport your cylinder. xx
.y husband carries the cylinder on the few times I've used it, like hospital appointments. Maybe he can carry the Inogen, but that's defeating the object. The photo shows looks like a shoulder bag bu that's not true as too heavy .xxSheila
Hi Sheila, I don’t know if the Inogen is heavier or lighter than the portable cylinders, from what I remember when I had the portable cylinders they’re about equal, but the cylinders are more awkward and cumbersome to carry, the biggest advantage of the Inogen POC is, it lasts longer than cylinders and you just recharge the battery.
Is it the Inogen one G5 Rove 6 POC you have been given, I have had the G5 and that got it swapped for the Rove 6 when the Columns needed replacing, they are basically the same machine, but just a newer version of the G5.
I also have the Inogen one G3, which I bought myself to go abroad on holiday, that is slightly heavier than the G5/Rove 6, but it does seem easier to carry because of its shape.
You could try asking your Oxygen Nurse about a trolley for the Inogen, I remember I got one with my Inogen one G2 when I was first given oxygen.
I don't want a trolley, and I don't know which model I will be given..I just thought it would be lighter than the cylinders and inconspicuous. Don't think that's going to happen somehow. Thank you for your reply .take care xx.Sheila
I think it is less conspicuous but unfortunately you can't avoid the cannula. I coped with taking mine to a clinic appointment but won't use it socially until I am forced to.
As I have just been put on ambulatory oxygen I find a lot of interesting info here, I have been given 4 cylinders, a small trolley and a backpack. The nurse did say we can discuss a concentrator at my next review. I’m lucky I can still manage to carry a cylinder in the backpack when I go out, but too much all the time indoors so I use the trolley which keeps getting in the way. I use a mobility scooter outside so the cylinder is carried by the scooter except when popping into shops with limited scooter access. When using the scooter I don’t need the oxygen on only when I get off the scooter and walk. I was told ambulatory oxygen is not given a high priority and running out is not considered as an emergency, 24/7 oxygen is something different if I progress at some stage to 24/7 oxygen I will be provided with a large concentrator, with a very long tube and a large backup cylinder in case of power cuts. Cylinders and or portable concentrator will be provided for going out. I’m fortunate that using the oxygen outside with the cannula on doesn’t bother me, same with the scooter, it’s bad enough having these diseases but I’m not going to let it stop me going out and doing things that I enjoy
So sorry to hear your predicament at the mo, it must be very debilitating for you. I do hope you get sorted soon and can enjoy life again. I know how you love going to the shops and i used to like reading your posts and seeing your photos. I wish you all the best and hope you can get sorted very soon. Stay strong, take care. I’m sure there are lots of friends on here who are thinking of you and hoping you get this problem sorted out.🌸🌷🌼
Thank you so much . I am suffering with depression,anxiety and panic attacks owing to have not left my house for 8months. Praying the Imogen will get me out and some sort of life back.
Thank you for your kind words ,I miss my shopping trips and just want to get out again.
What a shame you had such an upsetting experience.
I don’t understand why you can’t have cylinders and an Inogen. My prescription is for 6 cylinders and an Inogen (plus 2 large cylinders and 2 concentrators).
Has your respiratory team let you experience how the Inogen works with the pulse delivery? My nurse did a home visit to check I could cope with the pulse delivery and how it affected my saturation levels when walking around.
The Inogen is heavier than I had expected, but still lighter, and less cumbersome, than a cylinder. I have to use a wheelchair when going out as my breathing is so bad, and the Inogen clips onto the back of the chair.
Thank you for all this information .I will ask if I can keep at least one cylinder if I have the inogen. Will let you know. Thanks again take care xx.Sheila
Good for you I am hoping I will feel the same as you one day. I'm still digesting that I have to have the oxygen 24/7 for the rest of my life. It has come as a shock as didn't mind when i was on 7hrs per day or even 16hours as it meant I could go out without it.I'm not a back pack person and don't want to be stuck wheeling a trolley. I'm scared as not been out for 8 months and wanted something to make my life easier. It seems the Inogen is not as inconspicuous as I had imagined and still quite heavy. .
I was not offered to keep my cylinders they were taking them away when replacing with Imogen.
Hoping I'll get a second chance with a more understanding engineer and given a chance to try out the Inogen. I will ask if they will leave just one cylinder incase I have a problem
Fingers crossed or I'll never leave the house again.
I already have a concentrator with long tubing which enables me to walk around the house. Hate this also as the cannula really gets on my nerves on my face 24/7.
I'm praying I will get my Positivity back and stop being so negative.
Thanks for your reply you have been very helpfull take care .xx.Sheila
I have the Imogen which I use for going out. It is I suppose a bit lighter than a full cylinder and has a strap you can carry it by and also a longer strap with you can use on your shoulder or put across your body. You will soon get use to the fact you get oxygen as you breathe in, My oxygen cylinder was also removed once I got the Imogen but I am ok with it now, If you still find it heavy how about getting a rollator some of which have a bag and you could pop it into the bag and then push it along? That would help you and you can get second hand ones quite cheaply. Hope I have helped
hi Garshe I have an inogen, which I need for activity and exertion It came in a case you could either use as a shoulder bag or as a hand bag, yes I found it heavy, si I bought a backpack from Amazon designed to use with the inogen but found I could only walk for 15 minutes with it on. . I then purchased a Shopping trolley from Amazon to put it in with 4 wheels to push in front, which I always use going shopping. I am lucky that when husband and I go for walks he carries it for me. Hope you get it all sorted, my supplier is BOC, i find them very efficient. Marian
So sorry about unhelpful engineer,I've never had a problem with mine.I,too,am on oxygen 24/7 and have a trolley for my cylinder.I have a pulsometer which extends the use of the oxygen when out and about.You get used to the beeps and I don't notice it so much now.
Please don't give up on leaving the house.I have extremes low oxygen readings on movement but know my limitations and ,with the support of friends and family,am quite active.
It's very scary and I wish you well.Don't go out on your own and the confidence will grow.Good luck....Sue x
Thanks Sue. Going to take a lot of persuading to get me out and about with the oxygen. I'm having a problem accepting the 24/7 and the canular across my face is a real burden ..I'll wait for the Inogen and see how it goes.
What is your prescription ? and if your oxygen nurse agrees that the oxygen you need can be delivered by pulse ( which means that when the oxygen machine detects that you take a breath in then then it will deliver a pulse of oxygen.
Which Inogen machine did Baywater supply which you sent back ? They vary quite a lot in weight. I had an Inogen One G3 which I could manage ok. But it may not suit your prescription ?
Liquid oxygen can be delivered by pulse or constant flow from a flask. The flasks they give that are filled from a large, very large Dewar/Tank. These flasks I manage quite easily on a backpack - (they last me on constant flow 4-5 litres per min, 4hours )
However I know that Baywater will only deliver a liquid oxygen Dewar if it can be stored outside say in a shed. My supplier Air Liquide allows the Dewars to be stored in the house.
My feeling is that your home oxygen service should be helping you to sort this issue out. Not being able to leave the house is horrible isnt it ?
If I can help further please let me know and you are welcome to direct message me on here.
Thank you Pauline. I don't know what model Inogen the engineer brought as he didn't explain anything. He was very negative and was only here less than 10.minsMy prescription is I have 2 concentrators (1 upstairs , 1 downstairs ) I use 1L on resting and 3L when moving around..I also have 2 portable cylinders which I find heavy to carry. This is why my oxygen nurse suggested the Inogen hoping it would get me out of the house .
.because I r efused maybe they won't send another engineer. My oxygen nurse is contacting them tomorrow. Fingers crossed I will have a nice engineer instead of the rude one before.
It will helpful I hope when you find out the model of Inogen they are offering you. I am sure they will revisit you and explain. OI think the Inogen 5 is quite heavy though an Inogen One G3 should be ok.
If they are rude to you please ask them not to be rude to you and speak to you in a polite way. You deserve better Sheila.
I hate those bottles too with a vengeance. I can't carry them and wont trolley them around unless I absolutely have no other choice. if all else fails I think there may be an option for paediatric size bottles which would be easier .
If you want to keep the oxygen cylinders while you try out the Inogen, you should arrange this through your oxygen nurse. As you don't want to use a trolley and find both options too heavy, it does sound as if you will have to ask your husband to carry the Inogen or the cylinder.
No thank you, this is what i don't want. The Inogen is like a shoulder bag so less conspicuous. I don't want to be dragging a trolley around. I want to go on my shopping trips again and lunches out. A trolley is not good. Thank you for the information though. XxSheila
I would love to go shopping and wander round a town but I can’t do it any more. I can go to the shops here but not anywhere else. I use my scooter here. I’ve accepted I can’t do it.
I hope you can find a resolution for your problem with the oxygen. Life gets difficult as we get older. At least mine has. Xx
Hello Sheila I have an NHS inogen one g3 and yes I find it heavy as well but they won't supply anything lighter and it is pulse flow little puffs . I have also just bought my own inogen,g4 smaller and lighter so I can take it abroad. Are you in UK? Also you can buy special backpacks for them x
Yes I'm in South Wales UK.I don't know the model he brought. The bag was quite small but the concentrator although quite flat was heavy and then the battery which was also heavy. I really am not a back pack person its something I would never consider. I was told it was like a shoulder bag. xx.Sheila
I hardly ever go out I don't like the things on my face I feel too self conscious so when I do go out I don't take my 02 which is stupid of me so I'm trying to get used it x
I use portable oxygen and have modified a simple tripod frame to hang a bottle from it between the handles. I could not find any proprietary set of wheels to help the situation
If you would like further details of my outcome I will be pleased to post them here
Oh Sheila, I agree with what others have said about just sitting outside with your oxygen then eventually going further and further. I was exactly the same and hardly used my oxygen when first prescribed at it was such a shock that I needed it. I realised it was doing me more harm than good though so the easiest solution seemed to be to stop going out. This meant at the age of 48 I was basically a recluse. I started slowly until I gained a little confidence but it still isn't easy. After a year, I still get looks and stares but I just stare back 😂 I'm desperate to try and inogen but i can't seem to get on with the pulse flow when the respiratory team have tried it. Definitely get in touch with your respiratory team about keeping both for a while. Hopefully your oxygen engineer was just a one off. I use Baywater and luckily, have had no issues with them .
Hi I fully understand you I have same thing with the pulse flow I'm so confused but my nurse tells me to just breathe normally .. we shall see let's try it shall we x
I wrote a long reply then lost it ugh!!I got all dressed up and then have to put the cannula on my face and carry the tank.I was hoping the Inogen was less conspicuous and tie in with my outfits.
Yesterday I put my make up on did my hair dressed in my lovely outfit but once I put the cannula on my face I was depleted. I am a target for lots of stares which I can't handle. The oxygen keeps me alive so I have to use it. Hoping to get good news today re Inogen .xx.Sheila
Well aren’t you such a glamorous woman. I know the struggles been there myself before I was 50 I was on ambulatory oxygen 2019 loved how quiet the wee lane at the back of my house was and went walking with sisters . Lockdown was even better hardly anyone on the street. Then all of a sudden the streets were full. I got stares but most people at that time were prob linking it to covid unaware of my hidden lung condition well before the pandemic. Initially I hated it but the benefit I got of walking through a park, going for a nice meal into town, socialising with friends and even managing to do the chores more thoroughly outweighed all the stares. Now I don’t notice the looks. Your oxygen is only a very small part of you. Go out there, shine with all the glam you have. Have fun 🤩
I am 80 on 5th August so should be grateful I've lived this long . Many would be grateful. I just feel I could be doing more with my life and not wasting it indoors. Problem is easier said than done xx.Sheila
hi have they offered the sequal 5 oxygen you wouldn’t have to carry this but use it like a shopping basket when going out. oxygendirect.co.uk/store/SE...
Hi Sheila, I’m sorry of your frustrationg experience with Baywater, thankfully I’ve always found them helpful, I have been on oxygen 24/7 for the past 13 years and currently use a liquid high flow stroller to go out which is on a trolley, I also have 8 back up cylinders delivered which I also put on a trolley when I use one of these instead. I also had a demo of a portable concentrator - also on a trolley - but it was still too heavy and cumbersome so I declined. Hopefully your respiratory nurses will get on to Baywater for you to sort out your oxygen and that you need lightweight oxygen you can pull along on a trolley. Good Luck.
No I don't want a trolley. I want an Inogen that goes on your shoulder. I find Baywater fantastic with the exception of one particular engineer. He's always in a hurry and can be quite unpleasant. I was unfortunate to have him deliver the Inogen so never got to the demonstration. How have you coped with the cannula on your face for 13yrs ??
Hopefully Liam my oxygen nurse is sorting it today.
Happy for you with your liquid oxygen which I am not on
Hi Garshe, I am on oxygen continuous. The NHS delivers me four small canisters of O2 as and when I need them. They will arrive within 24 hours. They weigh about the same as the Inogen concentrator I had already acquired. So I think you should have another try. If you wear it over your shoulder it is bearable. As soon as you sit down you can either take the weight on your knees, the table, the chair or even the ground.
The tanks I am referring to are half the size of then ones I am guessing they gave you. They will last up to 4 hours depending on the amount of oxygen you are using. It is measured in litres per minute and your clinician should tell you the level you should use. I am on 2.5 litres per minute but am OK to go to 4 in an emergency.
It is important NOT to use more than you are advised as this can cause you to build up Carbon Dioxide in your lungs as this will make your breathing worse.
If we go out in the car (or on my mobility scooter) I use the tanks but have the concentrator with a fully charge battery on the scooter or in the car in case I run out of tanked O2. The tank give me about 3-4 hours use; the Inogen up to 6 more hours. I also have an on board car charger.
I suggest you talk to your COPD team, arrange some more demonstrations and see how you get on. If you need any more advise just drop me a mail via Health Unlocked.
Not heard a thing today. Started to get myself dressed. Had a bath and washed hair..then put my make up on Went to dress and decided Why. I'm not going anywhere so why bother. so got back in bed in my PJ s .can't be bothered. Another day indoors going into 9 months now .
The Ingogen machine is heavy. I have been using mine for 7 years now. I was surprised it wasn't more lightweight too. Also, it is uses pulse flow not continuous flow like you can use for the cylinders. When inhaling oxygen you can hear the pulse noise it makes. You can use your cylinders to last longer in pulse mode. Some things to consider. My Inogen only came with the "Single" battery. There is also a "Double" battery which last twice as long and heavier. Any additional batteries I had to pay for even with Medicare. They are not cheap and neither is a separate battery charger. I currently have another two Single and one Double battery. When I go out, I usually use the Double battery. How long it last depends on the number of liters being used. I had recently started to need 24x7 oxygen from having pneumonia (or flare of my hypersensitivity pneumonitis). I am constantly charging batteries. I am not back to my baseline for not needing oxygen to walk around the house. I did just get back to being able to just sit without the oxygen. The Inogen has a case with a carry strap and a handle. I did buy a backpack once for this but was disappointed that this latest does not have a place for a water bottle or proper pocket to carry a small wallet, phone, etc instead of having to carry a purse or fanny pack. The noise from the machine is loud, and it especially drives my husband nuts. The higher the liters the more noisy it gets (sounds like an airplane taking off!) For the tanks, you can get the size that has a cart to wheel it. You can buy decorative sleeves for the tanks fairly cheaply. I know the tanks that are carried hurt my back due to the weight. When I am around the house, I use a foldable cart for my Inogen One that has a smaller pocket section to put it in, and use the rest of the cart for things that I am needing throughout my day. You can use it when leaving the house. I put a heavy book in the bottom of the cart because the Inogen will make the cart tip if left on its own. I have been using my cart for 3 years now with no issues. Here's the link for what I bought for $45: amazon.com/gp/product/B07KM...
I have used my Inogen when traveling on an airplane. Just need to check with the airline regarding their policy or documentation you might need. I can also use this overnight (I use a 25' tubing so I can out it in a closet, bathroom, or outside the bedroom to reduce the noise.). I also have had a regular big concentrator mailed to my intended destination for longer trips. You can not use tanks on an airplane. You should be able to get a portable concentrator for travel use as an exception if you decide to go with tanks at home.
Hope this helps in looking at what will work for you. If the Inogen doesn't end up working for you, you should be able to go back to tanks. Let us know what you feel is going to work for you and why. I may need tanks sometime soon but like my flexibility for now.
Sheila, I just read your posts about not wanting a trolley so apologize for notes that weren't helpful. I know the 24x7 use is a big adjustment. There is a cannula that someone makes here in the states that shows just a half cannula across the face. I have one but find it's not so easy to keep on. I haven't tried it lately. Maybe something to try for a special occasion for a short time frame. I wish they make cannulas that were shorter than 4' which would make them less conspicuous. I do find I am more used to my cannula wearing. I find that wearing mine where I can tighten it behind my head makes it less conspicuous. I've also snaked the cannula tubing through my clothes to hide it. Might help in making it less visible for you. I am more adjusted these days to my situation. I just put on the cannula and smile at people when I am walking around. It makes a big difference in how people "see" you. I understand how you feel devastated right now. I hope you find your courage and your life becomes easier.
Thank you it's a big adjustment to go outside with the cannula as so conspicuous. I was hoping the Inogen was the answer to my prayers but it is not what I expected. I seem to be doomed to never leaving my house again .
It’s like going through the experience and stages of grief over a loved one, only YOU are the loved one. I hope you get to the stage of acceptance so you can have a fuller life. I know you mentioned you are married. I am too (33 years) and this has been hard on my husband too. In his mind it’s like I had gotten someone else’s diagnosis, Seeing me wearing oxygen didn’t fit his image as I was younger at the time—as in this is something old people deal with. I am in that older status now, though. He has adjusted better than I thought he would. The one thing I think about more than just my personal health struggles is how he is managing emotionally. I had an exacerbation and other health issues over the last 1.5 years where he has stepped up to take care of me. I try to stay positive and do what I can and also express how thankful I am for his help. I hope that my attitude will lessen his burden. This is just my personal journey. I hope you have a more lightness of heart as you continue yours.
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