Just update again after my appointment on 12/03/21 for my walking test.
Oxygen nurse said I don't need Oxygen yet which is good news π
15/03/21 phone call from Oxygen nurse saying after consultant had a look at the stats its been decided to put me on Oxygen as soon as possible that will be on wed 24/03/21
23/04/21 I have appointment for breathing test.
Its all done quick for which I'm grateful π
Now I'm scared as I will finally know how widespread IPF is.
I feel like I will become a burden to my wonderful husband and I will lose my independence and myself ( if that makes sense? )
Down to 10mg steroids thank god π will not be put on them again.
I don't have oxygen so I'm sure you'll get more practical replies from others. I can only imagine what a big step it is to be told you need oxygen and to learn to go out and about carting it with you. But plenty of people do. Having a health condition that means you need to rely more on those around doesn't make you a burden. It comes to many of us, to find ourselves gradually or indeed suddenly in need of more support and care. Wishing you all the best for your results π€
A friend on ambulatory O2 is very independent indeed. It doesn't stop her travelling, driving/flying where she wants to or seeing who she wants to. She has O2 in a backpack so her hands are free. (That's outside UK lock down of course).Wishing you all the very best for the future Mickie67
Lots of more experienced members using O2 part or full time will be along soon to advise xx
I have 6 bottles delivered most weeks by a wonderful company called Dolby and i cannot praise them enough.
They check if my cannulas need replacing, if the carrying bag ( i call it my Buzz Lightyear back pack) is ok and all in all an excellent , empathetic company to deal with.
I keep one in the car, one at the bedside and one in sitting room and only use following exertion or when sat levels drop below 88-90.
Obviously everyone is different and your Oxy nurse will guide you.
One thing i have noticed recently is when using during exercise things are definitely easier though slightly cumbersome at times.
One bit of advice, read the safety instructions first and donβt be a know all like me.
The first few nights i was using it downstairs we totally forgot about the naked flame rule as Mrs Bojangles had her usual β alterβ style candles lit ( she spends more on bloody candles than feeding me)but thankfully no harm done and now adhering to the rules despite Mrs Bβs frown.
Anyway, welcome to Oxyworld, it will help and once you get used to it life defo gets easier.
Hi Mickie, Pete isnβt on oxygen either but Iβm sure if and when that happens nothing will prevent him getting on with life. Iβm here for him of course and will never think of him as a burden. You will get through Iβm sure.
Itβs good that things have moved quickly for you so I just want to wish you well.
Hi I'm on oxygen I know exactly what you mean about feeling a burden I used to think the same. But to be honest I haven't really had any problems and my husband and family have been so supportive, so please don't worry. Have a lovely day and take care π Bernadette and Jack π xxxxxx
Sorry to hear your Problems But on the upside if Oxygen makes life better go for it.I would not worry about your partner I am not on Oxygen but when we found out about my Emphysema and Bronc , My wife was more than helpful AND still is in-between moaning at me.... ( that tells me she cares a lot)!!
Do not think that being on oxygen will make you a burden to anybody as I would have thought it would be quite the opposite. It will enable you to do more while also protecting other organs such as your heart so use it for how many hours it is suggested and be thankful. I am an oxygen user 24/7 now and without it would not be able to do anything that I do. I wish you well.
Mickie, it sounds like your consultant is taking a prophylactic approach to your using oxygen, which is good for you. It would be worthwhile having a bit more information about the oxygen nurse thinking that your 6 minute walk test indicated that you didnβt need oxygen. No doubt this will all be explained after your tests on the 23rd. I have used ambulatory oxygen since 2015 when an obvious dip in oxygen levels showed in my 6MWT. In the U.K. we are fortunate to have liquid oxygen supplied and the back packs for use outside are filled from a larger tank at home. How long it lasts depends on the flow rate that is suggested for you. While using it I have travelled etc and found little problem (I have not yet checked out Brexit changes)
I now also use oxygen at home but just from 2020. I find that using a pulse oximeter helps me use the oxygen well. A longer discussion on oxygen use would take up so much space but do come back if you or your husband want any more support.
Hi Mickie, a bit of βtough loveβ advice : if you need oxygen , you need oxygen, period. Relax and go with the flow, donβt fight it. I predict that you will not only feel much better but that you and your husband will both be much happier as a result! All Best Wishes, judg69
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UPDATE 
Update - I saw rheumologist today 
Update on headache post on 6 th March 
