Alpha 1 copd with chest infection, bad cold and lower back pain due to coughing 2 loads of antibiotics and steroids not working..what next?

Had a terrible cold, turned chest infection, and a I live alone struggling!! First the doc makes you visit the surgery even though I can hardly walk, and get the usual steroids and antibiotics. waited six hours for nhs doc to give me more stronger antibiotics and steroids, but now no better. No interest in me really! I mean xmas eve is just a normal day! Lower back pain making it impossible to do anything along with constant blocked lungs and chest. Have alpha 1 copd and keep getting treated like a smoker!! Find the NHS just ignoring me, no offer of help at home either... can hardlly boil kettle, what do you do if you have no friends or family to help!! Any advice?? Depression hitting big.

23 Replies

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  • Hi Dumba, sorry you're feeling so unwell still. I know there are lots of nasty things going round and people are needing repeated antibiotics.

    Someone else may have better advice, but I think your only choice is to go back to your GP for more antibiotics but do take a sputum sample to be tested to make sure what you're given is right for what you've got. I'm not sure what you mean about being "treated like a smoker"? - but your doctor is there to help you.

    If you need help at home tell your GP and ask for referral to social services. Or try to find out about short-term voluntary help in your area.

    Lastly, does your doctor know how depressed you're feeling? I'm really sorry about your situation and wish I could help you. Sue x

  • thanks Sue, what does a sputum sample get tested for. beginning to wonder if its something else. No way I am going back to doc, £15 each way in a taxi and on benefits. Plus cannot get dressed, wash etc....They know I am depressed, but that is made worse by no one really caring (apart from ice people like you). Cannot get mucus to clear, trying all the breathing recommendations etc, sitting and standing. Maybe just will take time. there is a chest support Scotland no. will maybe try them (Freephone).

  • Doesn't your doctors have a voluntary car service to help people get to the surgery?

    The sputum sample tests for infection and it will tell them which antibiotics it will respond to i.e. what will clear it.

    Think it would be a good idea to phone the chest support number - they'll be better able to advise you about who to contact up there. I live in Devon - a long way away. Do let us know what happens.

    And you could try going to You tube. They have exercises which show you how to clear mucus. Drink water - it helps to shift it. Look after yourself! Sue x

  • No transport available, and big doctor shortage seemingly for house visits. Have tried the exercises, getting weak to do much really. thanks again xx

  • Someone up there must be able to help! Do you have the 111 service? Would you be willing to go into hospital?

    I just keep asking questions. We need a Scotsman 🤔 xx

  • I see from another post you've found phoning 111 a waste of time. Sorry.

  • sent a doctor but they just listened to chest, just a student I think.. they don't even ask you to move about to see what the problems are ... would be no good in hospital!! have a little dog too, lucky have a garden for himx and food.

  • wished you lived near mw, I would help youxxx Berny

  • thanks Berny xx

  • I am so sorry for your situation, Dumba. I have all that you have, but I have a wonderful wife to care for me. When did doctors stop making house visits? to tell somebody who is suffering, infirm even, to go to the surgery or outpatients is inhuman. I hope things brighten up for you in 2017. Every best wish, Albert.

  • Still battling on with chesty cough and painful lower back. Returned a locum doc who just said they did not think was an infection, possible viral. So got beclometasone dipropionate nasal spray, doing no good really. Worrying now mostly is cough (and bad breathing, tight chest). Wondering what next. Mucus not clearing. Any other explanations. thanksx

  • I know it's so was for me to say but please try not to worry,there is a nasty viral infection going round. Please take care, drink plenty and rest. Keep in touch. Happy new year love Berny xx😊

  • thanks Berny, seems like head cold back again too, nightmare, will try and stay calm xxx appreciate reply.

  • Hi you shud get a ambulance and get them to take you a/e cause if got a tight chest and having diffcultly in breathing they shud treat as a emerncny case when u get there take ur meds wit u explain to them how long u had the problem and hopefully u will get sorted and also ask them if u cud spk to someone about help at home dont take any bull if it comes to it tell them u need to be admitted until they sort u out

    A simlara thing happen to me a few years ago i suffer from astam and bronchedistes and i was going back to hospital and they wud inject me wit streriods and with 30 mins i wud settle dwn and they wud sent me bak home this happen 3 / 4 times in a space of 10 days until i had ago at the doc in ae and i asked them to.read my dam notes and then i told them i will not leave until i am sorted and told them that i was under a consulton after that i was amitted and seen by my consulton 1st thing next day and was in for 2 weeks anyway take care

  • I cant go to hospital as have a small dog. You are right though the doc did not read my notes... he asked if I was asthmatic... I mean really...had to explain A1dpcopd etc.... was told to take no more steroids when finished. will demand help when they open on Wednesday xx holidays now in scotland

  • Hi Dumba,

    So sorry to hear what you have been going through. I'm an Alpha too, but in decent health at the moment. Have you joined the Alpha 1 UK support groups on Facebook? Are you in touch with other Scottish Alphas? Have you seen an Alpha 1 specialist consultant? It sounds as though you need medical help and support from people who understand the condition as you're not getting that from your GP.

    Let us know how it goes next week. xxx

  • have you got the link thanks x

  • This is the name of one support group on facebook.

    alpha-1 uk Support Group - Alpha-1 Antitrypsin Deficiency (Est 1997)

    It's a closed group so you will need to ask them to add you to the group. There's a lot of knowledge and support on the site and they have documents/leaflets that they will post to you.

    I'll send some more details soon...

  • thanks very much xx

  • no have no support or alpha 1 specialist. will try and find fb group thanks

  • As well as the support group on facebook there's a website too - here's the link

    alpha1.org.uk

  • Here's another alpha 1 uk website...

    alpha1awareness.org.uk

    and a link to their facebook page...

    facebook.com/groups/alpha1a...

  • And the link to the first alpha 1 support group I mentioned

    facebook.com/groups/alpha1u...

    I know that people in England and Wales with Alpha 1 are supposed to be offered the opportunity to be referred to a specialist Alpha 1 clinic but not sure about the situation in Scotland. People on the Facebook support group will be able to tell you though.

    xxx

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