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Oxygen

Dion50 profile image
14 Replies

Hi I have pulmonary fibrosis and was on number 3 oxygen I thought I was doing OKish but I'm absolutely devastated I now have to go on 4 at least 16 hours a day although I can space it out which isn't much good to me as my small tank won't last 2 hrs I don't think, in home isn't really a problem but on the rare occasion I go out it would be nice not to worry about not running out, iv heard I can buy oxygen I don't no how true it is with prescription and if I can buy a smaller version of tank in home so I can carry it any ideas would be welcome tia x

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Dion50 profile image
Dion50
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14 Replies
Bevvy profile image
Bevvy

You need to speak to you oxygen team. Because all done on prescription only they can help you. Have you gone to 4 with or without their support? If you have done this without their knowledge then you must discuss with them ASAP. If you suddenly need more oxygen it could be for many reasons eg chest infection brewing. It is so important (from info you have given) that you speak with medics. They will also ensure you have enough oxygen and not need to purchase any!

CDPO16 profile image
CDPO16

Hi, you need to speak to your respiratory team or whoever prescribed the increased oxygen about supplying a suitable supply of oxygen to meet your needs including something to use outside. If you don't have a respiratory team, contact your oxygen supplier who should have been notified of the increase.

Dion50 profile image
Dion50

Hi all thanks for the replys it was the respiratory nurse who put this in place I would never just switch doses,, I just think it seems bad enough we're in this position as wel as the epidemic and the fact that only going out for a few hours when we get the chance it's sad🙁

Thomac profile image
Thomac

Hi maybe look into liquid oxygen, it lasts longer and is quite light

judg69 profile image
judg69

Hi Dion , if you are prescribed oxygen at 4.0 lpm, your pulmonologist (US) or respiratory specialist (UK) should provide you with a home concentrator unit and tubing capable of continuously supplying you with 4.0 lpm in your home. There should be no need at all for you to rely on tanks at home. Use the tanks when out and about for a bit. I strongly advise you to contact your specialists at once as there is no reason for your situation, judg69

Dion50 profile image
Dion50 in reply tojudg69

Thank you I live in UK I had a concentrator but spend more time switching it back on and anyway the oxygen company has get my tanks up today and took the consentrator because the nurse say so x

aunttomany profile image
aunttomany

I have pf i also am on oxygen i have a concentrater and liquid oxygen. you should speak to your oxygen nurses. xxx

Dion50 profile image
Dion50 in reply toaunttomany

Thank you are you on it 16 hrs, iv been on the oxygen 1AND 1/2 YR now but only just started on 16hrs x

mary1956 profile image
mary1956

I am now on oxygen 24 hours. I use a concentrator at home and also have liquid oxygen to use outside. I have 2 flasks that are filled from the liquid oxygen tank. They are very lightweight and each lasts 2-3 hours.

Dion50 profile image
Dion50 in reply tomary1956

Thank you for your reply

aunttomany profile image
aunttomany in reply toDion50

I have been on oxygen for 2 years ,the last year has been at least 16 hours. I hope this helps. xx

KevinD1878 profile image
KevinD1878

Hi Dion, I have IPF also. Liquid Oxygen will give you a much longer period when you are out and about. I have 2 flasks and larger dewars from which to refill . These are kept in my garage. I also have 4 portable concentrated oxygen bottles but s you say these don't last long at all especially on 4 lpm. If we have a long day out or even a weekend away, I can just about get by by taking the 2 flasks and the for bottles. The portable concentrators are very expensive to buy. They can be prescribed if your oxygen supply company provides them but the really portable ones (nice little shoulder strap gadgets) only provide a pulse delivery, which is fine for COPD sufferers usually, but generally IPF sufferers need a continuous flow. There are some larger portable machines which you pull along, about the size of a cabin crew luggage item, which will give you continuous flow but only up to 2 or 3 lpm . I hired one two years ago because we were holidaying in Scotland and so not covered by the oxygen delivery holiday arrangements. It was alright but not the best solution especially in crowded situations. Mind you that won't be a problem nowadays.I hope they can sort you out with Liquid oxygen. It is quite liberating ! Kevin D

Dion50 profile image
Dion50 in reply toKevinD1878

Bless you thank you seems clearer now x

rodders1941 profile image
rodders1941

hi just heard of a alternative to a oxygen tank ,l think its called a converter,lv been told its the size of a note book but thats all l know ,but l will look it up . take care god bless Rodders1941

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