Fears realised

Hello everyone hope you got through Christmas and weren't too exhausted(is that possible lol even for people with good health?) and Happy New year to all of you.

Well the liquid oxygen debacle continues,I've realised that in no way does the main tank last two weeks before Christmas I spoke to someone from BOC to tell them that especially if something comes up like hospital appointments there was no way it will be enough,they said they would get back to me after the holidays and they did to inform me even it runs out I am not alllowed it to be refilled unless I can arrange a script from the respiratory team in the hospital,just getting hold of them can take days and then arranging the script another couple of days,so BOC are basically making me housebound,I'm afraid to use precious liquid oxygen in case of an emergency that I have to leave the house for,and I just don't know what I'm going to do next week as I have 3 separate appointments which will use most of the liquid oxygen ,and I know I will have other very important meetings to attend. I am in such distress,my biggest fear when I was changed from my wee portable would be loss of freedom and I was assured that my needs would be met,I feel so let down and just tired from having to fight to breathe. I keep being told that should last you,but I don't think that it is taken into consideration that I don't drive,so when I go out it takes longer,lots of waiting for taxis and then walking from place to place takes such a long time as I am slow on my feet but so want to stay on them,maybe if I can get in touch with the nursing team something can be arranged,but I am feeling bereft for my freedom.

2 Replies

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  • Please do make the effort to contact your respiratory team about this as I believe it may be a one-off adjustment to your home oxygen order form that is needed. You could also contact the BLF nurses for advice on 03000 030 555 during office hours.

  • I hope you can find a resolution to this very difficult problem and all will be back on track again. Xxx

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