Pulmonary fibrosis

[Favourite62]

Pulmonary Fibrosis

Hello

I'm new here. Is there any one suffering from pulmonary fibrosis. Was diagnosed 5 years ago. Having been using oxygen since then as my breathing is very bad.

I've just switched to liquid oxygen three weeks ago. I'm not sure if I did the right thing. Is anyone here on liquid oxygen please. I like to know how you are finding it.

Thank you

[Katinka46]

There are many here with PF. They will be along to help you.

This site is so supportive, and everyone, whatever their condition will offer you help and relevant advice.

All the best

K xx

[Favourite62 in reply to Katinka46]

Thank you so much. It will help to discuss with someone going through same problem.

[etch45]

I was on liquid oxygen until 6weeks ago.

I asked to go back on cylinders as the flask kept on malfunctioning it is good when working, flask easy to carry.

I am now with large concentrator in the house and portable for when I go out.

Have a good day, sun shining in Carlisle, going to have a lazy day with my cats.

Love Sheila. aka etch45 xxx

😎🐱🌞

[Favourite62 in reply to etch45]

Thank you for your reply. I was using portable cylinder and I'm beginning to find it a bit heavy to carry along when I go out. I saw a lady at the hospital with the liquid oxygen so I asked to change to it. I might have to go back to using portable cylinder as the flask malfunction at times like you said. Also because I'm on 5 litres a day. It finishes quick even though I have two flasks. I'll see how it goes. Thank you so much for your reply once again. I'm very grateful.

[Favourite62 in reply to etch45]

Enjoy yourself. Unfortunately, I can't fly due to my illness. Take care☀️

[dall05]

Hi Favorite,

Why not ask for both. I use liquid for local stuff and portables for days out etc.

It works well for me but if I had to choose 1 it would be portables every time. Liquids just too fiddly and unreliable.

[Favourite62 in reply to dall05]

Hi

Thank you I think is a good idea to have both. I will request for it. Sometimes I panic when we're out that the liquid will finish before I get home. Unlike the cylinder which I love so much. Just a bit heavy to carry. I have no choice now than to use both. Thank you so much. I appreciate your advice.

[imelda16]

I started to find the portable heavy so I bought a trolley of the internet "sidekick" it fits the portable in just right and has a handle that goes down but can be carried as well. I Use it for walks or any out and about tasks such as hanging my washing out or planting my pots up. It's been a great help I was using a shopping trolley at first but this one has it all and is only as big as the case used for portables seems expensive but worth it. Just google Sidekick 02 trolley should help. Good luck

[sarcoid123]

I find the liquid oxygen easy to use as I can easily switch from conserver mode (only delivers oxygen when I breathe in) and continuous mode which I need when walking any distance. I find it does evaporate a bit and difficult to know how much is left, whereas with the compressed oxygen cylinder, which I also have, there is a dial so it is easy to see how much is left. I use a shopping trolley with seat (look on Google) when I go out. It takes two cylinders as I also worry that one may run out while I am out.

The oxygen supply is an excellent service from the NHS.

[Champ294]

I have lpf and on24hr oxygen 3 litres at rest and 6 litres at moving l have never had liquid oxygen had a concentrator but it stopped being affective for me as. L do not breath naturAlly though me nose so was always out of breath leave only been diagnosed for 2 years but mine is progressing fast so got poor prognosis but determine tokeepgoing hope you get some good information about liquid oxygen take care

[Favourite62 in reply to Champ294]

I was put on 4 litres when I first diagnosed. I'm now on 5 litres. I recently changed to liquid oxygen about 3weeks ago. Is lighter to carry and I like it. My only fear is it finishes too quick for a long journey like I previously. I went with the advice I got from someone here that is using both the cylinder and the liquid which I found helpful. I have now requested for cylinders to be included. My mind will be at rest now.

[Favourite62 in reply to Champ294]

Thank you for your reply. My is so bad. I'm on oxygen 24 hours. I have concentrator st home also. Started in 4 litres on cylinder but I'm on 5 litres now.