i HAVE BRONCHIECTASIS , EMPHYSEMA AND ASTHMA , IWAS PUT ON O2 OVER NIGHT 9YRS AGO AND USED TO WAKE UP FEELING AS IF I HAD DREAMT I WAS BEING

STRANGLED , MY HEART RACING AND GASPING FOR BREATH , MY GP SUGGESTED IT MIGHT BE SLEEP APNOEA ( AS I WAS VERY TIRED DURING THE DAY AND WOKE UP FEELING I HADN'T SLEPT TOO ) . I WAS PUT ON 24HR O2 . I MENTIONED THE APNOEA WHILST IN HOSPITAL 2 YEARS AGO AND THEY MONITORED ME OVERNIGHT , MY O2 LEVEL WAS DROPPING TO 60% AT TIMES AND THEY TRIED ME ON A CPAP WHICH WAS A GREAT IMPROVEMENT , LAST YEAR WHEN I WAS IN HOSPITAL AGAIN THEY CHANGED THE CPAP FOR A BIPAP AND NO OVERNIGHT O2 , I HAVE SLEPT MUCH BETTER SINCE I HAVE BEEN ON THE BIPAP , BRILLIANT !!!. THEY ARE NOW SAYING I SHOULD COME OFF THE O2 ???? . WHEN I FIRST WENT ON O2 IT WAS BECAUSE I WAS HAVING TROUBLE BREATHING ON EXERTION AND ESPECIALLY FINDING IT DIFFICULT TO DO HOUSEWORK , I COULD NEVER UNDERSTAND WHY I WAS ON O2 OVERNIGHT AS IT DID NOTHING TO HELP ME AND IN FACT GAVE ME AN ULCER IN MY NOSE ( WHICH I STILL HAVE 8YRS LATER ) . I WORRY THAT IT IS FINANCIALLY BASED THOUGH IT WOULD BE FANTASTIC IF I DIDN'T NEED O2 ANYMORE , I WOULD FIND IT HARD TO BELIEVE THOUGH AS I HAVE HAD THIS CONDITION SINCE I WAS 2 YRS OLD AND IT HAS BEEN GETTING WORSE AS THE YEARS GO BY ( EXCEPT THE COUGH WHICH HAS REDUCED ) . HAS ANYONE GOT ANY IDEAS OR OPINIONS ON THIS SEQUENCE OF EVENTS OR ANY QUESTIONS TO ASK XXX DINNY XXXXX

14 Replies

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  • Whoops dinnyrayner you have written this post entirely in capital letters, with caps lock on. I know you don't normally write in Block caps, block caps are considered to be shouting and some people get upset by this and others may not respond to your post because of it.

    To answer your query briefly, patients normally only get prescribed 02 after an arterial blood gas test, if your abg shows you still need 02 I doubt very much your doctors will take you off it.

    People can have severe symptoms / lung damage and yet their ABG shows they do not require 02.

    Hope that helps.

  • Thanks Zoee , sorry about the unintentional shouting , left caps on without realising at first then thought it would look odd to change it , i wouldn't dream of shouting ay anyone xxx.Dinny xxxx

  • You are right, dinnyrayner, there is a push to cut the number of people using oxygen as the NHS is charged for each and every one prescribed it, whether they are currently using it to the full or not. However, I cannot see your oxygen being taken away if it is needed. As Zoee says, there would need to be blood tests to check your O2 levels at rest and upon exertion. Do you have a finger oxymeter? This would be handy for you to get some idea of what your oxygen saturation actually is. Above 90-92% is fine. Dropping below 88% would cause concern. I would suggest you speak to either your GP or your consultant about your worries.

  • Thanks Auntymary , on oxygen i am usually 95% ish and without am about 86% but i have not got a finger oxymeter at home . I will have to make sure i am fully tested and that the results are properly recorded . My last but one appointment i asked for my levels to be done after a walk and the nurse waited for 5 mins before taking the reading so that they were over the 85% , at my last appointment they were taken after an hour sitting in the waiting room on o2 and the consultant said my levels were better because they were higher than last time so i had to point out the reason to her which means it wasn't recorded correctly , would you say i had reason to be concerned about the way information is recorded ??

    Dinny xxxxx

  • Your oxygen level probably changes whenever you get up and move around. It would be a good idea to get an oximeter and monitor your numbers at home. She waited for the number to be above 85%? I wonder why?

  • Yes i wonder why too , seems a bit odd , i did mention it at the time but she just ignored me ??? i will have to be watchful and more forthright , as she was talking to the other nurse i didn't want to be rude and interupt but i will make sure i can actually see the reading straight off ,My sats vary big time when i move around , they even drop when i talk , eat , laugh or do something sitting down , they are ok if i sit still . thank you for your reply xx Dinny xxxx

  • I am afraid i cannot afford an oximeter although i would love one , perhaps i can find a second hand one . xxx Dinny xxx

  • I got mine from Amazon.

    amazon.co.uk/Biosync-Oximet...

  • Thank you so much , i have ordered one already xxx, i had no idea you could get one for that price , i have been looking at some that cost hundreds . I am usually good at finding a good price on things , brilliant xx thanks again Puffthemagicdragon xxxx Dinnyxxxx

  • Even cheaper one but I don't know how good it is.

    amazon.co.uk/FamilyDoc-Digi...

  • I DON'T HAVE AN ANSWER TO YOUR QUESTION BUT.........IF YOU WANT TO GET YOUR MESSAGE OVER BY USING CAPITALS I CAN'T FIND A REASON WHY YOU SHOULDN'T.

    IF I USE CAPITALS WHEN I WRITE BY HAND NO-ONE EVER COMMENTS!!!

    THERE IS NO SUCH THING AS COMPUTER ETIQUETTE UNLESS YOU THINK THAT COMPUTERS SHOULD RULE OUR LITERARY LIFE AS WELL AS EVERYTHING ELSE.

  • Thank you all for your comments and help with the oximeter , i will check them out xxxx Dinny xxxxxxxxxx

  • Glad I could be of help. My practice nurse uses one at the surgery.

    Well worth having just for peace of mind :)

  • Absolutely xx peace of mind is so important xx. if your practice nurse uses one then thats good enough for me , i honestly can't tell you what a difference it will make to me, i have been looking for one for about 3 years (on and off ) another member of our group said he had one but had been sent it as a gift from USA and said he had been trying for years before that to get one at a reasonable price . I live in the west of Ireland , perhaps we are in a time warp and need to catch up on a few things xx thanks again xxxxDinny xxxx

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