Hi last week the oxygen came And once again put my oxygen up in December I was on 1and 2. Then last month she put me to 2and3. Last Friday she came Back and put it up to 3and 4 si liquid oxygen not lasting as long also she gave me a card to say I am retaining oxygen in December when I first went on oxygen was on Bipap in hospital not able to stand it .Tonight my sats are still low and I've Headache. Feel nauseas and actually fell asleep on chair oxygen nurse coming Back in 3 weeks to see how I'm doing so pretty concerned. Going to speak to District nurse in morning to see if she has any advice also my Breathing really Bad and once again in a Quandry as to how to cope thanks for listening so to speak
Carbon Dioxide retention. : Hi last... - Lung Conditions C...
Carbon Dioxide retention.
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Time_2_drink
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Health Unlocked really needs a support box next to the like. Clicking like doesn't feel right when we want to show support.
I agree like does not seem the right word to. Use at times
Yes. I agree. I cant help at all with your situation but I read your post & hoping someone can give some input ( I am not on oxygen yet so have no experiences to share). Take care, Gayle
Thank you Gayle hope you can keep of the oxygen x
I also agree that 'like' isn't right. It needs to be something like concerned or supportive. I'm sure it's not beyond the wit of man - or woman, to add another button!
True very easy to do
I've sent feedback to HU requesting this.
It makes sense doesn't it sometimes it feels wrong to say like
Take care and try not to worry. If you are feeling bad speak to gp. All the best and will be thinking of you.
Unfortunatley my GP is not very supportive I could speak to matron But I've Been taken off Book only allowed do long have asked GP for rereferal Best wishes
Sorry you are feeling so bad again. I hope you get the oxygen sorted out soon and you feel better. xx
Thank you last night was horrid head in Bucket most of night District nurse coming
Thinking of you and hoping you get the help you need. Lots of love xxxxxxx
Thank you sassy here's hoping xxxxxx
I also am unable to give you any advice... but I am thinking of you and hope things get better soon for you xxxx
Thank you hope so never ends
So sorry to hear of your problems with retention. My dad was on bipartisan when in hospital. Before that he had lots of strange 'dreams' that he'd tell us about. In one he could hear the sound of a saxophone coming from the basement. He went to investigate and found Bessie's of the Barn playing brass band music for him, conducted by Winston Churchill! It was all very amusing although obviously there was a serious side to it.
I am really worried when I had mask in hospital it was so claustraphobic my mind would go into overdrive if I need to wear one again permanent
Hi T2d. I know exactly how you feel. When I was put on the mask in hospital I had to really control myself because I wanted to scream. I`m so claustrophobic ! I`m also on 4lpm on my oxygen. I changed from liquid oxygen to cylinders so that I`d always know there was oxygen. I didn`t like the fact that the liquid oxy just evaporated overnight. Fortunately I`m not a CO2 retainer like you. Keep your chin up, Sheila x
So pleased you not retaining now it's awful just worrying about Being told I'll have to go on mask again it's such a shock going from 1to 2 to 3 and 4 the noise from the liquid is horrid she may be putting it up again when she comes back do hope not getting really bad heads told district nurse today she thinks the headaches and nausea may be caused by the reflexology I had yesterday .My liquid froze on Monday night that was a performance .The liquid goes so quick on these numbers and I'm on constant makes it quicker still so going to be hard if we go for a day out .Take care x
• in reply toTime_2_drink
I have recently come home from hospital with a b-pap machine i t makes the mask feel very hot and uncomfortable is their anything else i can use do you know?
Time_2_drink• in reply to
I'm sorry I can't help you maybe write a post with the question there are people who are long term users on here and I'm sure they will give you some tips take care
Hi Hun , sorry you are going through a crappy time !!! Think we all go there !! Not nice !!! I am on oxygen 16 hours daily 1 litre resting 2 walking cleaning exercising ect, I also am a retainer and I am on a bipap, it took me ages to "get used to it !!" I have been on bipap now for over a year and still can't sleep in it !!! I suffer with claustrophobia, always have , so what I do is use my bipap while watching T.V. 2 - 3 hours and try to get at least an hour on it in a morning , I know its not the right way but its working !!! My retention is a lot better !! I wish I could sleep in it would give me "more free time !!". Or try wearing it relaxing to some nice music or a bit of meditation , I hope some of this helps you hun ,good luck xxx
IF I do have to go Back on it I would prefer your way I am claustrophobic to .I was also on One and two but sats to low so put up I still drop unable to do housework at all Unfortunatley will find out what is going to happen when oxygen nurse comes back on 3 August take care
I'm not on oxygen but do retain carbon dioxide due to poor lung function. I battled with bipap for years, nasalmask only but could not sleep and made my nose itchy. Finally Brompton set me up with a vpap machine and a wisp mask which just wraps around the nose. It took a little while but now use it every night and sleeping well. It may be worth asking about wisp mask it's made by Philips respironics. Hope you can sort something out
Thank you glad you have something that works hope you never need oxygen
Hi I agree as well there should be a button to show care and support I'm on oxygen as well on 1 litres plus bibep I wanted to know what kind advise is he looking for if there is I'm oxygen cylinder concentrator bibep nebulizer etc if you want I'm foxy79 mate take care
Time_2_drink Hi Time, I'm copying and pasting a reply I received from cosykitty some time ago when I questioned oxygen levels in a previous post. I hope you find it helpful and that she does not mind me doing this, if so, I sincerely apologize kitty.
cosykitty
Hi JoHarr, as Darlene is on LTOT (long term oxygen therapy) it's important to remember that a higher than optimal (88-92%) Saturation could indicate some CO2 retention. Bear in mind that depending on the flow of extra oxygen, not everyone is able to ventilate the CO2 and the build up can result in toxicity (Hypercapnia and Respiratory Acidosis).
There is a fine balance to be met when on oxygen therapy, one that is sometimes very difficult to achieve. I couldn't understand why respiratory doctors were reluctant to start my mother on LTOT. I just knew her saturation was dangerously low. But we were never properly informed (but that's another story) about the consequences of Oxygen usage in some COPD patients. Those often referred to as 'retainers'.
I soon realised the consequences when my mother was eventually given supplemental oxygen and she went on to develop CO2 retention. She was unable to tolerate NIV so this left us with very little options when it came to treatment.
97-98% is considered normal for those without lung disease, but in those with poor lung function it may indicate a poor gas exchange. I'm in no way an expert on these things, just a daughter who cared for a mother who sadly succumbed to COPD earlier this year.
I send you my very best.
Best wishes from JoHarr
Thank you for your reply and taking the time to copy it to me joHarr best wishes
Hi I had the same problem CD retention. Was given a vpap machine to use/ wear overnight. Took some getting used to , i wont lie but it brought me such relief. No more crippling headaches in the morning which could last all day. I used to be sitting holding my head and rocking back and forward the pain was unbelievable. Well no more. This machine saved my sanity and the big bonus is my breathing has improved and my energy levels are up.The machine delivers a burst of air as I breathe in even if I am asleep and my breathing is really shallow it detects this and pushes more air through and regulates your breathing. I have a new lease of life it's fantastic. I was on oxygen 16 hours a day at 2L. Now I can go 12 hours on air. My oxygen is connected to the vpap machine overnight. Wishing you the very best.
• in reply toLinda8p
did you have to turn your oxygen up when using the cpap I am usually at rest on 1 ltl and 3-4 when moving and 4 through the cpap. but if i take oxygen while still on the machine they are reading 63 my level should be 88-92 which does not make sence when my concentrater is throwing out 4 lts.
Time_2_drink• in reply to
I was on machine whilst in hospital was told I'm retaining again last week I had type 2 respiratory failure in December just had oxygen put up to 4 like you I been told 88-92 regularly lot lower. What gets me is told shouldn't have to much oxygen then literage put up .I would ask oxygen nurse take care I.
• in reply toTime_2_drink
I only go up to 4 when moving or when on the bpap machine otherwise it is 1 ltr i am trying to find a nose thing instead of using a mask which i find very claustrophbic
Time_2_drink• in reply to
I hope you find something more comfortable than the full mask I seen somewhere on here a cloth one mentioned if you look throw old posts you may see something suitable Take care .
Thanks Linda I did have the machine in hospital thought I was suffocating really good that you can come of oxygen so much I'm afraid I've gone the other way it's more or less constant plus doubled oxygen literage which I thought was dangerous when retaining Best wishes .
Sorry to hear that best of luck xxx
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