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Tagged: Apple series 6, IPF, OxyGo Next, supplemental oxygen
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Oxygen
Meredith replied 1 year, 3 months ago 31 Members · 187 Replies
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@warlock
Hi Bill,
Thanks for sharing, this is interesting information about liquid oxygen. It’s so hard to obtain here where I live! Keep us posted on whether the cost increased next bill, I’d be curious.
Char. -
I actually have a question about using a portable oxygen concentrator. Do the concentrators have a filter to filter out fine organisms such as Covid. If I go out and wear a mask but am using the concentrator, which is pulling air from my surrounding area, does the mask do any good?
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Sorry to say that any virus germ etc is sucked directly into your lungs, so mask no good at all. A bottle of liquid O2 is the only answer.
Take care Sue
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Bobbie
They all have a filter but it’s very course. It would stop a fly but not a virus. An oxygen cylinder, either gas or liquid is much better. On a plane it’s Hobson’s choice, you can only use a POC. I read that the filters on an airliner will filter out viruses but the airports remain dangerous.Bill
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Hi all. I am 85 years old and I’m in the final stages of this disease, and have been on oxygen 24/7 for over 3 years. My needs have increased as it progresses. I currently use 15l just to walk, and have 2 concentrators hooked in tandem to supply what I need in the home.
My pulmonologist has set my goal to try to stay above 89%, and I can do that as long as I do not exert myself. I know we are all different in how our bodies use oxygen, but I know I would have been dead a while ago if not for the rather heavy use that I do. I have sleep apnea, and have oxygen going through it as I sleep. The flow is 15 l, and I know I don’t need that much at night, but my pulmonologist said it doesn’t hurt to have it that high, but that may because of how bad my lungs are at this point.
My main reason for writing this is to assure victims of this disease that they should not hold back from using oxygen to make their lives easier. It is much better to have a little more than you need than to not have enough. Low levels not only damage your organs, it makes your life much harder. I wish all of you well.
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Hi Floyd
Like you I am at stage 4, it is it happening very rapidly, in the last 2 months I have doubled my O2 needs, cannot move without dropping below 69 blood O2 even on the highest number my machines go up to, being supplied with a Y joint next Tuesday to join my 2 cylinders together, atm I often have to have two sets of prongs up my nose, not the most comfortable thing. I am adjusting my O2 levels myself, cannot wait for pulmonologist appointments (three months apart) my O2 delivery guy is a sweetheart and he can see what I need and delivers accordingly (free, liquid O2) my situation seems unique on this forum, I only need 4 lts per minute, same for sleeping, if I just sit, but the minute I stand am gasping for air, and have have the two prongs up my nose delivering 12lts, wheelchair being delivered this week for trips out for my sanity. I like you Floyd I say to people use as much O2 as YOU feel you need, it is just too dangerous and uncomfortable not to.
Take care all. Sue
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Don and Mark,
I’m replying to a comment from several months ago… Finger pulse oximeters are NOT ACCURATE IN SUNLIGHT. The sensors in them get overloaded. If you exercise inside and get a lower reading when doing the same exercise outside, then your finger oximeter is likely giving you a low reading when outside. They are also not accurate for persons with darker skin. Don’t depend on them too heavily.
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Hello Jonathan, thank you for sharing, this is good info to know. Take care, Mark
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Hi,
I have just started to use liquid oxygen from a flask for moving around. It was supplied with a nose canula but I seem only to breath properly through my mouth as my nose just can’t let enough oxy in. I have just bought a small face mask to use and that seems to deliver oxygen to my lungs a lot more efficiently.
Any comments or tips from those who have more experience in self supporting use of oxygen?
Bob
PS And it is really cold here which seems to make breathing outside even more troublesome.
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Hi Bob
I am a mouth breather too and have had to train myself to nose breathe. Never even considered face mask. I have found that if I lie on one side or the other that side nostril tends to bung up so also have had to train my self to sleep on my back, in a half sitting up position. Don’t need high concentrations of O2 to sleep 3 or 4 litres but when I move it is a lot higher, up to 10/12 sometimes now. Covid is keeping me away from hospitals and pulmonologist (also in foreign country) so having to make my own decisions re O2. Luckily my O2 supplier will allow me to have what I need weekly with no questions, and even offer suggestions.
Oh yes the cold is a killer, if you go out use some form of snood or face covering to warm the air before it gets to your lungs.
Take care Sue
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@bob-osborne
Bob,
How much O are you using. The “bottles” that deliver the O differ greatly. Helios 850 and 300 need a special canula that senses your inhalation through one nostril and delivers the O through the other. This is a problem if you have a blockage in either nostril eg a deviated septum. There is another special canula that works in this situation. Your supplier should know what he’s given you and you can research it on the net. There is a line called “strollers” but you’d have to look them up. Same company as Helios I think it’s Caire.
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Susan and Bill,
Many thanks for your advice. This explains a lot to me. I have the Oxygen people coming back on Monday to train me a little on the types of Canula!
Bob
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Hi all,
I learned the other day that oximeters (at least mine) do not function in cold temperatures. I haven’t been using mine recently, because I don’t want to take my gloves off to use it. I made an exception the other day after finishing my daily walk and got no reading–either initially, or even after a few minutes indoors.
John
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Yes John, this happens when your hands are cold. Rubbing your hands together fast and hard will usually warm them up enough to get a reading,
Bill
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Dear Participants,
What a long thread, with much interesting comment. I was prescibed oxygen in December 2019 following an ‘iffy’ 6 minute walk test. I tried a portable bottle on a walk but found it of little apparant benefit. So, for the last year we carried on doing our evening walk of between 2.5 and 3 miles. This included a rise and fall of about 120 feet, without oxygen. Admittedly slow up the hills.
Suddenly, at the end of January, 27th, 28th, I hit the buffers. The walk uphill home was a real struggle. What had changed? The symptom change that I noted was that before the exacerbation my resting O2 reading would be in the 92 – 95 range. Following the exacerbation my resting rate had dropped to the 86 – 89 bracket. So, out came my bottled oxygen. As has been noted on this site, it became necessary to raise the O2 levels into the mid 90’s just to maintain basic good health.
Result is that I am now effectively tied to a gas bottle. It has been quite a change, and a learning process. For example the necessity to use O2 to walk upstairs to bed, and avoid a chronic coughing attack.
As I am in the UK and on the NHS, next week I see the local ‘physiology ‘ department about prescribing an oxygen concentrator. This to minimise the delivery of O2 gas cylinders.
To realise that I am entering a critical period is really sobering. Learning to manage the oxygen, and to continue to get exercise.
Re the nose cannula, I like others find outdoor exercise in cool temperatures and the oxygen causes my nose to run, thus breathing in through the nose becomes most difficult. My horizons have really shrunk.
Thanks to all participants for your comments.
Regards to all, Joe
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Dear Joe
Just one warning about concentrators, as you are in the UK, they do not have filters that deal with Covid, so either use your bottled O2 when out in any sort of company or get a liquid O2 back pack, that involves having a huge cylinder (I have three + two small ones) in your home to use around the house with 10 metre hose and also fills up your back pack which doesn’t *breathe* in the surrounding air.
Take care all Sue
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I urge you to move heaven and earth to get liquid oxygen (LOX). Ideally you should have a stationary concentrator for sleeping and around the house if you need it. Use LOX for activities. I get 1 delivery a month. The container looks a little like a Dalek. I then fill a portable container (In my case Helios 850 Marathon) but there are others. I was using 10 or 12 gas cylinders/week in an attempt to remain active. Google Caire oxygen and you’ll see a lot of portables. By a coincidence my LOX in its backpack weighs about 5.6 lb, the same as a gas cylinder in a back pack but the LOX lasts all day. You have to keep the reservoir on the ground floor for safety reasons.
Keep us posted,
Bill -
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Each country seems to have different systems
I have huge cylinders that I fill my back pack from,and use for my O2 needs, tried to find the literage but not anywhere visible, I use one and a 1/4 of these cylinders per week for my O2 (weekly delivery)
Wish my back pack lasted all day because of my O2 levels it only lasts 1 and a 1/2 hours and even then I struggle
Insurance company needs to be informed if you have O2 cylinders in the house.
Take care Sue
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Hi Susan and Bill,
I will find out next Thursday what might be offered. I suspect that due to ‘Health and Safety’ issues, and the fact that our island of about 75,000 may not have installed an LOX facility. Fingers crossed! The sudden dependance on O2 has been rather depressing, but hey, chin up and all that. May take a portable bottle tomorrow and go to a motorcycle trial. I used to be an official, and observer, but gave up on that 18 months ago, anticipating the inevitable.
Thanks for the support.
Regards Joe.
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Please be aware our bodies die not store oxygen.
We benefit only while we are receiving oxygen.
Breathlessness is not a sign of low oxygen.
We become breathless when the carbon dioxide, a waste product, builds uo in our lungs. Purse-lip breathing helps clear carbon dioxide – so does blowing up a balloon, and its faster. Blow into the balloon and let it go; three times should help.
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I just graduated from pulmonary rehab at the hospital. The rehab people say 89 and lower need supplemental oxygen. 90 and above can use oxygen if desired. The number on your supplemental oxygen machine is determined by your dr. Or by a walking test. This takes your oxygen level at the beginning and after 10 or 15 minutes of walking and then another oxygen level. A respiratory nurse can perform this test. The number on your machine is a function of your recovery time after walking.
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Around 88 is generally considered the lower limit, but some people can’t get that high. Being chronically much below that can result in slow, progressive brain injury. My father lived in the 80’s%, meaning PO2 in the very low 60’s to high 50’s, from a 2 pack a day life. His cognitive function had deteriorated dramatically by the time he died at 72. That, of course, was COPD from smoking, but our bodies don’t care why our 02 is low, just that it it.
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It seems that many would like to avoid the doctor and take the advice of strangers.
That said, you need an Oximeter. Get it at the drugstore. If you go below 90, rest.
There’s nothing shameful about using oxygen. No worse than glasses or hearing aids.
You need it especially when you are not at rest. Find a portable source of oxygen. Use it. The need for oxygen will not go away if you try to ignore it. You might. Think about it.
Meredith
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