British Lung Foundation
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Can anyone tell me how often they see their respiratory nurse. My dad was only diagnosed as a co2 retainer about a 6 weeks ago 2 of them he was in hospital and hes been home 4 weeks Friday. He's had 2 appointments to see the nurse both times his co2 has been high, she told us that she'd be in touch regarding his next appointment. My dad told me she rung Friday and said that his appointment is for November sometime.

Is it me or does that seem a age away, I know that it's not but I thought he'd need more monitoring than having a 2 month gap.

I'm thinking about ringing her tomorrow and asking if tgere was a mistake or shall I just wait until the given appointment?

9 Replies

Hi how often you see the nurse or doctor depends on how severe the illness is. I have mild/moderate copd and only see my nurse once a year. Apparently that is acceptable, although I think it is far too long. Do you know your dads lung function or the severity of his illness? x


If you are worried melissa, maybe do as you say, theres no harm in phoning or trying for an earlier appoint. they may well explain things better to you,

i'm just out of hospital myself, and ti get a letter for an o,p appoint within 4 weeks

love jimmy xxx :)


No dont wait...if his c02 is high it needs sorting out asap he is going to feel really unwell and have terrible headaches.....ring them tomorrow he needs to be seen


He has end stage copd and has been that since he was diagnosed 6 years ago, he has been having headaches most mornings and my sister said his feet look a bit swollen. His oxygen level didn't get higher than 80 yesterday and hes on . 5 from the time he gets up 6.30-21:30. Is there any other things I could check to monitor his co2 levels. He has been dropping on and off to sleep in the chair lately but when I ask if he's ok he'll always say he's fine even if he's not.

He would wait until things are too bad and hospital is the option.

Sorry for the so many questions.


Hi Melissa I didn't realise he was end stage and I am so sorry. It is very dangerous if his oxygen levels drop regularly below 84% as his other organs will be affected. If he is still that low then call an ambulance now. He needs treatment in hospital. Let us know what happens please. xx


It's been higher today, I'll ring the nurse tomorrow and find out if he can be seen sooner. Nothing his gp can do is there?


Hi mellisa I have co2 retention but with IPF and in January it was noticed after a blood test by my Respiratory team and they immediately upped my 02 to 4lts and told me to use the mask overnight which seems to have done the trick for now. My 02 levels were plummeting to 75 and they still do if I try to walk to the kitchen or even just standing. It does make you feel poorly and with headache. Just insist they keep a check on his oxygen levels that is important. good luck.


Thank you, or have queried his oxygen but they've told me hes oxygen sensitive. (not sure what that means) today he has been alot more breathlessness so I think something is going on.

Thanks for the responses :)



Sorry to here this yes ring she should be able to come to you I'm not on oxygen yet I see mine every month tell or ask for GP to ring you hope this helps

Take care


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