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Hi, I have recently been diagnosed with copd after months & months of constant chest infection, antibiotics & generslly unwell & feeling unwell. Im reading as much as I can about this condition until I learn more regards to how to live/deal with it & best way forward. I had a ct scan whic I get the redults on wed from the consultant. He was unsble to do any breathing tests last week as I had nothing to give so may try them again this week although not sure what this entails. I currently on a 3 week course of steroids so am hoping to feel better after this...... will I be back to my normal self? Im struggling to understand why I feel up & down. Ok then chest hurts & beathing bad the next?! I dont kow ehat brings on this change so quickly? My throat & mouth constantly are so dry also.

Anyway, sorry to go on but any advice is gratefully acceoted. You learn the most from talking to others with the same/similar conditions.

Thanks,

Helen

12 Replies

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  • Hi Helen, welcome. You will learn a lot on here from some wonderful people. Good luck with the results on Wednesday. I was diagnosed a year ago, severe, still learning. Take care

  • Hi

    First don't believe all you read on the net, especially from USA it does tend to be a bit over the top on occasions.

    Chest infections can be really vicious and painful . Steroids are great but can have some quite strange side effects, as do antibiotics and the inhalers.

    It will take a while to get back to anything like normal, and it sounds like you have a really bad infection, so don't expect a magical cure over night, only the scan and breathing tests will tell them how bad it is.

    Once the tests have been completed and the consultant has everything he/she can plan how to help you by selecting the correct antibiotic and other medicines for the bug you have.

    Good Luck

  • Good Morning Littleht3, Hope you are feeling a bit better this morning. My husband suffers with severe COPD and I can relate to the constant chest infections etc. A couple of years ago he seemed to be on antibiotics all the time! It has settled down now and seems to be more stable though the cold weather absolutely floors him. The change in temperature from indoors to outdoors is dreadful and he cant go anywhere near a perfume dept! Firstly I would say that COPD is a very personal illness in many ways - it depends on your own personal triggers and it is learning about them.

    You mention your throat and mouth are constantly dry - do you use inhalers and if you do - do you rinse your mouth after using them.

    Perhaps a good place to start would be the BLF helpline (Click on the red balloon in the right hand corner of screen) they will be able to help you give you some good advise and have an excellent information pack.

    I did write to a post a while ago which basically said - stop smoking; keep as fit as you can - when you see the consultant ask about a referral to a pulmonary rehab course. It is 6-8 weeks, twice a week - one hour of monitored exercise and one hour of information. Can honestly say it changed my husbands life!

    Good luck and let us know about your results on Wednesday. Take good care with love TAD xx

  • Thanks for your replies, it helps to talk about it as i still feel I know so little about this condition. How can I avoid flare ups inthe future or is this even possible to avoid? Im normally fit & healthy so having to slow down is difficult. I have a family who are very supportive & helpful & i work full time although signed off at the moment. I stopped smoking a few months ago before being diagnosed.

    My husband says he wants his normally happy, bubbly wife back & so do I......how long does this normally take? Will I be back to normal after the course of steroids? X

  • Stopping smoking is the best thing, steroids should help you, looking after your health and eating healthily, do try to go on a pulmonary rehab course, good luck Richard.

  • Yes it is normal to return to normal after the steroids! My husband has just finished a course and his appetite has regulated, his sleeping is back to normal and he is a lot less bad tempered!! My husband works full time too. There has been a lot of research in America about vitamin D3 and I give my husband a high dose every day and have done for about three years together with 1000mg vitamin C. He has still had flare ups but touch wood not as bad as previously. The key is to learn when you are getting an infection and treat it very quickly - when my husband has waited a few days to see if it gets worse, the infection seems to get a tighter grip and takes 3 or 4 courses of abs and steroids to get rid of it. I am sure you will be happy and bubbly again - but the downside is the treatment can make you feel dreadful. Take good care TAD xxx

  • Hi Littleht3, I had chest infections on and off every six to eight weeks for two years then the doctor finally referred me to the 'Chest Clinic' at the local hospital. The Consultant there also worked at Papworth Hospital, a world renowned centre for heart and lung treatments, and I was asked if I would go there. When I did I was admitted almost immediately for a two week course of intravenous antibiotics and have now been going there every 3 months for a check up and the occasional re-admittance for iv's for over 12 years now. So maybe your doctor will suggest that you receive specialist treatment when you get your results back but in any case you can always ask for a referral to a specialist. I live a normal life as far as my lung problems allow (it's just all the other problems associated with getting older that cause me to slow down) and just 'get on with it'. Take care. Lizzy.

  • Hi Helen, it is difficult in the early days of diagnosis, and there is a period of adjustment, at the moment it sounds as though your condition is unstable (as you are on a course of steroids), but once things begin to improve with the right medicines and after attending a PR course your condition can become stable and you will feel a lot better. You won't return to as you were before lung damage but you will improve on your current situation.

    The very best thing I would recommend for any one newly diagnosed would be to ask your consultant or GP for a referral to a Pulmonary Rehabilitation course (PR) where you can learn many things about the ways we can help ourselves and slow down the progress of further deterioration.

    This may not apply to you but if you are still smoking get help with stopping and also avoid others who smoke, and avoid contact with those who may be infected with a cold or a flu virus.

    Drink plenty of water (the meds can cause dry mouth but do mention this to the doc) keep warm, and don't venture out in cold damp weather if you don't have to.

    Take good care and keep in touch.

    Best wishes BC

    PS check out BLF's home pages for more information - click red balloon top right.

  • Hi Littleht3

    Welcome to the best site with the best people on the Web.

    As usual the best advice is given here by people living with what you are going through!!

    DONT look anywhere else for info about your condition cos it'll scare the pants off you!

    Everyone here has a different condition and some are further down the line than you, I've been LIVING with COPD for twenty years so don't let it get you down. I walk three dogs twice a day, I have a half Allotment, eight chickens and the Wife all keeping me busy so there is life with COPD, just a bit adjusted to your condition.

    My advice is always to take the advice on here and to get out of breathe, on purpose, at least once a day to give the tubes a workout and eat well and look after yourself x

    Welcome again and stay tuned.........

  • Hi Helen welcome to the site I was diagnosed 10 years ago age 42 and I'm still learning the first 3 years I avoided GP surgeries shopping centres for fear of getting the flu and my level stayed the same now I'm level 4 I have a flu jab every year and try to keep fit.

  • Hi and welcome to the site. Don’t worry about getting on and on. It does good to oneself to pour this out in the open.

    I was the same as you. I got diagnosed first as having asthma. But I coughed continuously. I got infections one after another. In the end, the consultant sent me to the Royal Brompton. They have a vast array of machinery to test lungs ins all sorts of condition, as they are the specialist in England.

    I was diagnosed with bronchiectasis and enlargement of some of my sacs (alveoli)> I got ill for quite some time. Very ill in 2010. The consultant found that I had TB on top of pneumonia. Fortunately, this was diagnosed at its beginning. But I now take a couple of antibiotics every day to eradicate this.

    Dryness of the mouth and throat. If the throat gets sore, se you doc to see if you’ve got a thrush. This is quite common. The other reason for it is the effect of the antibiotics, (for me, especially at night time). Drink plenty, and this should help.

    If you are diagnosed with a lung illness, ask to be referred to a pulmonary team and a consultant. The consultant will follow your progress. So will the pulmonary nurse, but she will also give you advice n how to cope with it. She also may refer you to a rehabilitation, which is a group of ill people where the nurse, a physiotherapist explain what to do, do a walking test and from that do some gentle exercise for six weeks.

    OK. I’ll stop here because there’s plenty to go on with this… and more!

    Hope this helps a bit.

  • Be careful what you read esp on the net there is a lot of rubbish out there

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