Introducing myself to the COPD community as a 'Newbie'

Hi everyone,

My husband (65-year old, normal weight, normally physically fit and strong) was diagnosed with COPD recently following a lung function test. He then experienced his first exacerbation which we both found incredibly frightening so took ourselves of to St Helier A&E in the early hours of 29th February as he was finding it very difficult to breathe.

The A&E staff were wonderful and put him on a nebuliser to assist his breathing followed by the beginning of a 4-day course of steroid tablets and yet another nebuliser. He felt a lot more comfortable after all of this this so I was able to take him home. However, the next morning he actually passed out after a coughing fit and his condition hasn't substantially improved since then, despite getting a further telephone prescription for another steriod-based inhaler. Last Thursday he had deteriorated again, was finding it difficult to breathe, heavy (dry) coughing, feverish and very weak so I booked a same-day appointment with his GP the following morning convinced it was a chest infection. I attended his appointment where the GP checked his chest and said it wasn't an infection and anyway, antibiotics are no longer used for COPD.

Being 15 years younger than him, I am doing my best to care for him (I work full-time but from home) but have received no advice on what to do for the best. His coughing is wearing him out, he's also riddled with arthritis after a career of heavy physical work carpet cleaning. Suddenly, my husband who was an active and fit man (sailed single-handed across the Pacific when he was younger and we sailed together until a few years ago, always in the garden etc.) has become an old, weary, worn out man almost overnight, unable to do much physically and it is horrible.

Thankfully, he is mentally quite positive but I can't stand to see him suffer. Any advice on what I should be doing to improve his quality of life, gratefully received.

Many thanks for your time.

26 Replies

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  • Grr gps not all infections can be heard please go back to the hospital hubby needs support through this nasty exasperation.

    Many gps aren't very clued up on copd and the government's pushing for them not to issue antibiotics or steroids is penny pinching please please go back to the hospital for the treatment he needs

  • If there is an infection then he certainly needs antibiotics and which one will depend in what has infected him. He needs his sputum tested as a priority. Any GP who blandly says that antibiotics are no longer used for COPD would not remain my GP.

    Secondly, how was he diagnosed? Has he had spirometry, x-ray, ct scan? He needs to be referred to a consultant specialist.

  • Hi TamsinRush and welcome to this great site. It is scary to see someone you care about suffering. It is important for your husband to be as well as he can and he needs help to recover from this episode. Go back to your doctor and explain the situation. Your husband may need to be referred to a consultant.

    Good luck and hope things improve soon. Xxx

  • Welcome I agree with what has already been said take him back to A and E

    I sometimes wonder why some of these doctors are still in a job or why in the first place they became doctors

    Take care

    Dorothy

  • Money.

  • Welcome to the site TamsinRush

    Sorry your poor husband is having such a rough time. I see he had a lung function test. Do you know what stage he is? Also wondering, how he was feeling before you had the test. Was he getting along pretty well? I agree with the others, on going back to the dr.

    They should have done a chest x-ray, to check for an infection. You can't tell if there's an infection, just by listening.

    What inhalers does he have? Hope we can help you out.😊

    Rubyxx 😊

  • Seems like a new doctor might be a good idea. Good job you took him to hospital . A good diet, exercise help . wouldn't hesitate to call an ambulance when he is struggling to breath,and using his blue inhaler till help arrives.

  • Not all doctors know about copd and do not know what is best the govemont has cut right back on us like the rest say go back to the hospital that you took him to in the first place

  • You lovely people, thank you. Finally I think I'm getting some support in a scary situation. Firstly, Alan's GP didn't refer him for a chest X-Ray at all initially but the nurse subsequently did and was astonished that this wasn't the first point of call.

    Alan was told when he phoned for the results a week later that everything was clear. This was a massive relief as his father died of lung cancer at the age of 67. When we went to A&E on 29th Feb, the doctor there did get another X-ray done, which was useful for comparison and he said that there was no sign of infection. He also got blood tests which apparently confirmed this.

    As I say, his GP then listened to his chest at his last appointment on Friday and confirmed that there was no infection. I raised the fact that a friend of ours has a similar condition and has a 'rescue pack' with includes antibiotics and steroids but he told us that the new guidelines say that antibiotics don't help with COPD.

    I personally think that if someone has a fever, loss of apetite and is very weak and is sweating and then shivering, this has to be a sign of infection but the GP was adamant that antibiotics wouldn't help.

    In answer to your specific questions:

    Toci, it was a normal exhale into a tube. Is that spirometry?

    sassy59, no option was offered to see a specialist.

    rubyred777, no indication of what COPD stage he's at. I've only just found out online that it could be 1, 2 or 3.

    Everyone else, thank you for your input. I've been at my wit's end and through my own personal experience with the NHS, don't have high hopes but private insurance is just unaffordable.

    Again, thank you for your support. It's really appreciated.

  • Hi Tamsinrush I`d be interested to know which new guidelines the GP has seen which say that antibiotics don`t help with COPD. When having a chest infection antibiotics and steroids are always used. Maybe I should have a word with BLF. Incidentally you do know you can ring them for advice and speak to a qualified nurse - 03000 030555. I do hope your husband`s feeling better now. Fighting for breath is very frightening. Take care, Sheila xx

  • Hi tasminrush seems like with u in your husband's corner he's in safe hands I know it's scary but u will get to know and respond to your husband's illness good luck brilliant people on this site to help u xx

  • Good morning. My experience so far. Diagnosed Bronchiectasis early 2012. Exacerbations for couple of years controlled by antibiotics. Fine. Could never expel, but constant clearing & have taste of infection. Winter 2014 antibiotics seem now not to control symptoms, constant coughing, taste of infection but cannot expel. Chest X-ray reveals emphysema. GP prescribes Duaklir Genuair 340/12 inhalation powder, twice a day. & this has proved a great help. Coughing practically gone. Infection still there, but I can live with this as believe until can expel & get analysed, understand GP's reluctance to prescribe antibiotics. On web read with COPD it is very important to have a good relationship with your GP, fortunately I have with mine. You may know there a centres of excellence in the country too for COPD. My experience so far, it is a journey to find right combination of treatments, but moral support you are giving your husband is invaluable too. Sincerely meant GA

  • Ask your GP for a referral to see a consultant so that he can get a CT scan (much more in-depth results than just an x-ray). If his GP refuses, think about changing - go to nhs.uk/Service-Search/GP/Lo... - plug in your location & this will give you a list of all GPs in your area together with reviews.

    Welcome to the site - good luck with everything - there is so much help/great information to be gained on this site, just keep on asking any questions you have.

  • Dear Dedalus,

    Another great piece of advice which I have added to my list. Thank you for your suggestion.

  • Glad you found us Tamsin - I've had more help on here than from any other source. Can confirm that many GPs are very much in the dark re respiratory problems, they are being given "guidelines" (for which read orders) to reduce costs by substituting drugs which don't work for those which have done for yonks and finally it would be easier to get an audience with the Pope than to access a lot of them, in my area at least. I assume that denying steroids to COPD sufferers is yet another of their penny-pinching schemes. Many of us have found that sharing info on sites like HU can give us a new lease of life - I hope we can help. Try to keep him moving, even the smallest execise helps, I've found a high protein diet helps and take a load of vit. etc. supplements - doctors say a balanced diet is all you need but take into account that things are grown in impoverished soil and animals are fed on rubbish and you realise that we can all do with a bit of supplementing. Keep battering on doors until you get answers, you won't be popular but who cares - this is a man's health on the line. Wish you well and keep in touch.

  • Hi there Tasminrush, I'm from your area (ish) as I've been to StHelier hospital also. The comments you've had are all correct and it's so important to have a doctor who knows about COPD so that your husband can get all the right meds etc. Good luck and I hope hubbie is soon feeling better. Welcome to the site and looking forward to learning how you both got on etc.

  • Hi Tasmin I'm a newbie on this site to ,but have suffered from COPD for a long time and at first was very scared and use to panick so i know how your husband feels . Just let me ask has your husband been recommended to any pulmonary rehab classes or breath easy club ? if not i think if you contacted the BLF they could possibly put you in touch with your nearest group , these offer all kinds of technique in how to manage COPD living with it ,breathing technique ect.

    I live in Devon and we have a lot of support here ,may i ask if that is ST Helier in Carshalton if so it's my home town. I hope this helps you some way . I will say when he's coughing there is a technique called pursed lip breathing if you look it up will help with the cough and slow breathing down a bit . Take care . Diane

    P.S i always have a rescue pack x

  • Hi Diane,

    More great advice. No he hasn't been referred to anyone. I'll raise this with the nurse when we see her and am going to look up pursed lip breathing right now. I'm very grateful to you all.

  • Thank you so much everyone for your invaluable help and support. All I know about the antibiotic situation is what the GP told us which is basically that there are new guidelines which suggest that if a COPD sufferer has a chest infection then it will be viral and not bacterial which means that antibiotics wouldn't help. I'm not convinced myself. I'm taking my husband to a nurse appointment on Thursday and if he still hasn't improved, will insist on getting a course of antibiotics. I'll let you know how we get on. I'm so glad I found this website!

  • Doycycline is the recommended antibiotic at the moment by the leading respiratory consultants along with prenisolone steroids my doctor checks all the time . I was put on them friday , change in the weather we had a bit of snow.. You keep pushing hun and make sure he see's a respiratory consultant who knows what their talking about .

  • Hello you lovely people. As you know, I'm putting together a list of questions to take to my husband's nurse appointment on Thursday most of which I've based on your own advice, without which I would have really been in the dark, thank you. I am planning to call BLF tomorrow to also ask for their advice but wanted to run this by you as well just in case, through your own experience, you can let me know if I've missed anything obvious.

    •Do you know what stage of COPD I have?

    •Do you know what specific lung disease I have?

    •Could you arrange for me to have a CT scan and referral to a specialist?

    •Can you give me advice on my pulmonary rehabilitation options?

    •I would like a rescue pack including antibiotics and steroids which would hopefully avoid another visit to A&E.

    •I would like to see if antibiotics help my current condition which has not improved. I have been advised that ‘Doycycline is the recommended antibiotic at the moment by the leading respiratory consultants’. Could I have a prescription?

    •How do you know when your inhaler has run out?

    •Are there any foods I should avoid? (there is a mixed opinion online)

    •Should I be taking vitamin supplements?

    I don't want to burden you with my constant questions but please let me know if there's anything screamingly obvious I should add.

    I must say that I'm not overly-impressed with my husband's current GP who, from your input, seems to be up-to-date with treatment 'guidelines' but not personal care. He has given us very little information or advice so I may look for another one.

    Apart from making sure that my husband receives the best advice and treatment to aid his suffering, I'm eager to pass on anything I learn to other 'newbies'.

    Best wishes.

  • Hi Tamsin, These doctors, its a battle.

    Please push as your husband is entitled to far better treatment.

    I was at my Pulmonary Rehab today, and we were talking about rescue package, and the idea is as soon as we feel an infection is starting to take the medication,

    and the rescue package is Anti biotic and steroid s.

    I have on the back of this made an appointment to see the doctor for a rescue package.

    Before the doctors took me seriously, I did use the out of hours and A&E, this was through desperation to keep life going.

    When your husband goes to the doctor, and they do the tests if he's anything like me,

    I dont aways show the classic signs, They seem to expect me to rattle and I don't and I hold my own on the oxygen stats.

    Please make sure the docs are aware of this.

    At my doctors I am on something called a mission of care, this is to keep me out of hospital , apparently this is something going to be nation wide. see if this something that would be beneficial for your husband , it only means someone should be following your care ..

    good luck on Thursday

    x

  • Thank you so much Jackie. I'm starting to believe that our trusted doctors are only led by the guidelines they're given.

    Neither of us want to take up the time or resources of A&E or ambulances when we could get ourselves there, as we've done so far.

    However, I do expect some semblence of care which we haven't yet received but I'm going to push for with all my might.

  • I'm really sorry to hear how poorly your husband is. I can't add anything to other advice for immediate help. However when he recovers from all this, get referred to a COPD or respiratory nurse who are often more clued up than GPs

    Again, when he recovers, ask for a referral to Pulmonary Rehab where he'll get advice and education on dealing with all problems and medication. It will help him feel knowledgeable and empowered to fight for what he needs. Hope all goes well

  • Hi lovely people, I thought I'd let you know how we got on at my husband's nurse appointment today. She was brilliant, very patient and gave us 40 minutes of her valuable time. She obviously knew a lot more than the GP about COPD and we've come away with answers to my questions and a repeat prescription for a rescue prescription of steoroids and antibiotics. Yes, antibiotics!!! And a repeat prescription to boot.

    When I said that his GP at the same practice but wasn't prepared to prescribe antibiotics she said that there were two schools of thought but her's was that if you have an exacerbation you should start with the steroid pills and inhaler and back this up with antibiotics and we now have a 'rescue pack' with both.

    She's also referred him to a Pulmonary Rehabilitation course and given him a COPD booklet which includes a diary.

    In answer to my specific questions, she gave the following answers:

    Could you arrange for me to have a CT scan and referral to a specialist? - Not necessary as the chest X-ray showed no abnormalties.

    How do you know when your inhaler has run out? Good question but two puffs twice a day should last a month. Write the date of opening on the box.

    I hope this helps all of you others.

  • I have been quietly following this thread, newishly diagnosed myself. May I ask the purpose of the diary?

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