Need advice for copd

Any advice please. I have copd and mild emphysema I have had 6 exacerbation in 10 months and have been discharged from consultants as not ill enough yet have just gone back to work after being off for 3 weeks with chest infection and I'm starting to feel unwell again. i am close to stopping all meds until I'm ill enough for them to take me serious.

16 Replies

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  • Hi Nikki, COPD is an umbrella term for emphysema and chronic bronchitis. Your consultant should be taking you seriously right now and please don't stop taking your medication. Xxxx

  • Hello Nikkiburgess8 . I'm so sorry you aren't feeling well. For us with lung issues an infection can throw you completely off course for months. It literally takes forever to feel a bit better. I know how frustrating it is, but please don't go off your medication as that could have dire consequences that may be irreversible. I would keep going back to your consultant until you are heard. Do you have anyone who can accompany you?

    Hang in there. Thinking of you.

    Cas xx 🌹

  • Hello Nikki please don't stop taking your meds, and I agree your consultant should be listening to you and taking you seriously.xx

  • There is only so much your consultant can do the rest is up to you.I know when I see my consultant in August I will be discharged, perhaps its my own fault for changing my lifestyle, exercising and eating the best diet I can. My CT scan showed severe damage I have yet to have a decent spirometry test due to infections. Its frustrating but the last thing I would do is stop medications etc because I did not agree with my consultant.

  • Hello ,I have a couple of questions for you.

    1. Are you a smoker,? And are you still smoking?.

    2. Are you working in a smokey or dusty atmosphere?

    3. Do you live in an inner city pollution type a Real?

    Once you have had an exacerbation, it does seem that they follow on one after the other. After moving areas and going to a different GP , he decided to change my anti biotic, put me on a double dose, and change the dosage of prednisolone to the old "long method" of 40mg for 5 days, then 35mg for 5 days, 30mg, 25mg etc etc. Only this method works for me.

    I find that the 40mg for 5 days then stop does me no good whatsoever. In my opinion you need to see you chest specialist GP or a consultant and explain to them your thoughts. Are you seeing a respiratory nurse at your GP 's ?

    Whatever you do DO NOT gamble with your health by stopping medicines. Best of luck. Chris

  • I won't stop taking meds was just very low last night. I don't smoke but did for 30 yrs. I do work in a cold dusty warehouse but being off sick so much am going through the process of reducing hrs with a view to taking early retirement.

  • Hi Nikki so sorry you are having a rough time please do NOT stop your mendication. You need to go back to your GP for a different antibiotic if you are coughing up sputum.copd can make you feel ill for weeks after an exacerbation i to have just come out of hospital and was told it could take up to 6 weeks before I started to feel better although mine is more advanced than yours. You have to find ways to cope with it first of all if you are a smoker please STOP this will slow the progression down, ask your Dr to refer you on to rehab course you will be with people who have the same problem as you and you will learn a lot from it. Please let us know how you get on.

    Love Sue

  • Thank you I have just done the course and found it such a help I won't stop taking meds was in a bad day last night but today is a new day. Onwards and upwards x x

  • So pleased to hear that, would not want anyone to be as stupid as me I ignored all the warnings years ago I am on oxygen 24/7 now but I have adjusted along the way I am still in a good place and enjoying life but would rather be oxygen free but like you Nikki its onwards and upwards. Thanks for your reply👍👍 Sue

  • I have changed my life style I exercise regularly and take all my meds as required.everything about my life has changed since my diagnosis but being ill every 2 months and on steroids so much had ballooned my weight by 3stone. So forgive me if I had a rant as was feeling very low. I won't not take my meds as they are my lifeline. Was tired and fed up last night.

  • You're allowed to rant, and we are all willing to listen any time you need to let off steam. I'm glad you are staying with your meds and I hope you're not so tired and fed up now.

    It's very hard to stay positive when you keep being ill, but you are doing the right thing by exercising regularly, and I think it's very sensible of you to work towards taking early retirement. But do go back to your GP if you feel the antibiotics you've been given aren't working.

    I hope that with the warmer weather, your exercise regime and perhaps working fewer hours you will start to feel much better very soon.

    Please keep in touch and let us know how you are getting on. Jan :-)

  • It's only my personal opinion but, I am moderate and have only had 2 exacerbations in the Six years since proper diagnosis. I am sure the vitimin D3, I am taking, is protecting me from bugs. My family have coughed and spluttered throughout winter and I haven't caught so much as a cold.

    Have you had yours tested?

    The cold, dusty atmosphere is probably aggravating your lungs in the first place. You should feel better soon, now it's warming up a bit. xx

  • I myself have severe copd ,I have never seen a consultant and am very lucky if I can get appointment with the gp. in under a month .I am having to wait 4 weeks to see our resp nurse at the surgery .When I am ill I can only get to see a paramedic ? I also get infections I believe with lung disease you normally dont get to see a consultant until you have been admitted to hospital so I been told ,I live in west sussex uk xx

  • Empysema is aging of the lungs. Mine was caused by whooping cough and air pollution.

    Tips

    Make sure you take NAC Tablets to remove the mucus. Vitamin A and D and Mullein Leaf to heal the lungs.

    Remove dairy from your diet. I take Hemp Milk.

    If you drink tea, make sure it is Caffeine free. Redbush.

    Drink plenty of water

    Check Pollution levels in your area. If High wear a pollution Mask. Get one with a filter, I get the pack of two for £1.

    Also make sure you eat God's foods.

    God heals today.

    Also try and exercise at least 3 times a week

    You will see the benefits, and your lungs will improve.

    All the best and enjoy life here on earth.

  • Nikkiburgess8 I would just go to another doc and get a second opinion That s a lot of flare ups I had one s days ago the first in 10 month's,the pollen count was high and I had been going not resting I don't no about stopping meds Good luck

  • Hi Nikki. Being discharged from your consultant means you are referred back to your GP. Have you got a named COPD GP at your practice?

    Have you dropped a sputum sample to your doctor recently? It may be you need different antibiotics. You could see your GP and ask for a review and a spirometry test to determine if your condition is getting worse. Don't stop taking the medication. :)

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