Update A and E

Took advice yesterday partners oxygen levels dropped to 84 pulse 132 and blood sugar 9.7 he was admitted given nebulizer chest xray bloods both came back ok oxygen levels went up to 90 then Dr came back said unfortunately there isn't much else they can do as it's the progression of the copd .while the Dr was talking she said I can see the oxygen dipping at 89 that's borderline but still said to go home.I asked what if they just drop again she said just come back .well I'm trying to monitor every hour now it keeps going down to 84 he just keeps saying he's aching all over and keeps sleeping I don't know what to do how come I'm worried and they aren't.oh he's classed as a retainer so too dangerous to have oxygen at home .

8 Replies

This seems to happening more and more,it's a disgrace.

I agree , Damon, so many cutbacks .

Yet another person discharged back into the community with no support. Sadly shortytree this is an all too common theme. As a partner I can only imagine the anxiety you have right now. Checking SATs every hour is extremely proactive but I fear this may cause further stress to you and your partner if you see a low reading. Thus perpetuating the feeling that things are unstable.

Go with how your partner feels and don't hesitate to call the GP, 111 or 999 if you think things are escalating out of your control. You shouldn't be left feeling abandoned, and the attitude that's there nothing more they can do because it's the natural progression of COPD is to my mind, a wholly irresponsible way of communicating this disease to a patient and their family.

There's plenty that can be done in the community to help you and your partner. You just need to be signposted to the right places. Ask questions, see what's available in your local area. Start with your GP practice and go from there. Pick up the phone and speak to the duty doctor at your surgery today if need be. Just don't sit and feel under so much pressure to take sole responsibility of your partner's care. I've been there and it's 'bleeping' scary!

A good piece of advice I had from a paramedic once was 'just call us, that's what we're here for. It doesn't mean we'll whisk you off to hospital. We'll check you over and make a decision based on the facts'.

Of course we don't want to waste valuable resources calling an ambulance or paramedic unnecessarily, but frankly If you've been left with no other support then what alternative do you have!? There are a number of community based respiratory services, but in many instances you have to ask or you won't get. Google A.R.A.S. Team (Acute Respiratory Assessment Service) in your area, and see what comes up. There should be a team in your locale, or something similar.

You quite clearly want reassurance and that is completely understandable. There is nothing quite as frightening as being left to manage a person (a loved one especially) who cannot breathe. It's hard not to panic yourself, and that cannot be underestimated. I have been there, and I would not want to sit back and not advise you to speak up if you are overwhelmed.

I felt completely out of my depth at times when having to make an assessment as to whether my Mum needed intervention. I didn't want to get it wrong and miss something, but equally I didn't want to put Mum through unnecessary poking and prodding and a trip into hospital. It's so difficult to interpret because when someone feels breathless, panic often ensues and things can accelerate out of hand.

You are quite clearly a huge support to your partner, so get educated on the support available to you sooner rather than later. I promise you'll feel better for it. Don't suffer in silence. Ask for help.....x

edited to add:

I've read your previous recent thread and notice your partner does have a consultant, so perhaps contact their secretary in the first instance to discuss your concerns. Let the consultant decide how to move forward. If you partner's COPD is severe, your local hospice may be able to help in offering some therapeutic services to make life more comfortable.

If you can encourage your partner to engage in all possible avenues of help it would be a positive step forward. The patient needs to want the help, as much as you want it for them (if that makes sense?).

Thinking of you both

Excellent reply cosy kitty!

Thank you for your advice we have to wait to be referred by lung specialist for pulmonary rehabilitation and breathe easy groups at the moment we are still trying to get on the lung specialists list there is at least a months waiting list before an appointment can be offered his GPRS has tried rushing it through still no joy will keep you all posted and your right at moment we feel left behind

This happens to me a lot I often daily have low sats 60s and below taking into hospital stabilised and sent home mean while being in hospital bed bound makes me scared to do anything not that I can when I come home and just want to take to my bed where I feel safer which I know is wrong to .I am a oxygen retainer as are lots of others on this site and we have oxygen Having oxygen I still have these low readings I have become obsessed with the oxi meter please try not to it will make you I'll .

Our nearest ARAS team is in North Manchester. We do have the Integrated Respiratory Service in East Cheshire. So you may need to Google these services by a slightly different name for your area.

I'm also a retainer but I have oxygen 24 /7. I also have a non invasive ventilator which I use about 15 hrs a day which blows the carbon dioxide off. I also have excellent support from my GP and my Long Term Team in the Community. I have my blood gasses checked every 3 months unless I feel as though they are going up and can always get one of the nurses to come out and check it. I am very lucky it would seem with all the support that I am offered.

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