what can I do now about Bronciestaxis

what can I do .I went to see the consultant two weeks ago .he did not examine me and when I told him I was worse he did not reply apart from saying you have it mild I do not need to see you again ..was diagnosed two and a half years ago and am on azithromicine three times a week .I went to the doctors in tears last week I felt so rotton permanent cough and tight chest and wheezing .he gave me a 6 day course of steroids they finish today and I am as bad as ever ..can not go out as I am coughing so much I am constantly wetting myself .my sleep is nearly none exsistent because of cough and tight chest .I am really down and fed up seems nobody can or will help me ..has anybody any suggestions ..sorry to sound miserable but am at the end of my tether

14 Replies

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  • Hi Marlene - so sorry you are feeling so awful. I think you need to firstly phone the BLF and ask to speak to one of their nurses - number is under the red balloon at the top of the page. They are very experienced and will be able to advise you. Secondly you need to go back to your GP, particularly as a bank holiday weekend is coming up. Ask if you need antibiotics as you may have an infection. I have bronchiectasis and have had it for some years but did not realise that you can have an exacerbation without an infection. Let us know how you get on.

  • 03000 030 555

  • Hi Pentreath, just to comment on the Bronch exacerbations without infection. It's certainly possible and even more difficult to treat then an infection. I'm not entirely sure if it's that there is no infection there or just that the symptoms of infection aren't obvious. We often read here about sputum samples coming back negative but that doesn't necessarily mean that there's no infection. This has happened to me numerous times and I get the usual two weeks antibiotics. Even worse is when there is no sputum at all but you have severe pain, weakness and breathlessness. This is how most of my exacerbations are now and antibiotics are the only things that suppress the symptoms. I know there's a type of 'dry' Bronch but I just can't think of the proper name right now.

    Exacerbations are defined by a list of symptoms. If you have more then three symptoms out of this list, then it's an exacerbation - either an infective or non-infective exacerbation.

    As clear as mud, isn't it ? :)

  • Hi Billiejean2. That probably explains why I am nearly two months trying to get an exacerbation resolved. Just to add to my woes I now have an infected rash that is very likely to be an allergic reaction to antibiotics. Now taking antihistamine tablets though the usual treatment is, guess what, antibiotics. Just so tired, so fed up, wanting to sleep lying down etc and still coughing.

  • Sorry to hear you're having such a hard time P. I hope things improve soon.

  • Thank you, have had blood test and had an X-ray today and results back next week so hope something to explain my current problems is identified and is treatable.

  • Great reply from Penreath marlee and the BLF helpline are on

    03000 030 555. Xxx

  • Hi there, I was recently diagnosed with cylindrical Bronchiectasis and first thing consultant did was refer me to a respiratory physiotherapist to learn how to do active breathing and how to clear mucus, also a brilliant butekyo cough suppression techniques. I have to do the active breathing every day, and practice it. If you can't get referred to a physio, there are some great videos on YouTube explaining the techniques. Then after that apparently you have to practice it. I have asthma as well, so they can't move mucus manually as they worry that it will give me an attack.

    Also you could definitely have an infection and other posters are right to say you may need more different antibiotics. And calling BFL. I am also on the Azithromycin 3 times a week regime as well as a host of asthma meds.

    Hope this is of some help

    R

  • Do you have asthma as well M ? Those symptoms sound more asthmatic then anything else. People who have Bronchiectasis often have asthma as well. Maybe a change of inhaler could work.

  • Sounds like you need to ask for a second opinion to me if your symptoms are that bad obviously what you have been given is not doing it's job.. go back to gp and ask to be referred to a different consultant I reckon!

  • Hi. I have had the condition for about 12yrs, was trying t get answers on how to manage condition for at least 8yrs as chest getting worse and taking nebulisers and steroids often.

    Well was so dissapointed I went to my GP to ask for a referral second opinion at Birmingham Chest Clinic. Well it's the best thing I have done, full round of tests including X-ray and CT scan full range of breathing tests, and lots of information plus stopping of some medication and introduction of new inhaler. I have not had a flare up this winter and no cough .i am hoping my good health continues as it has made a big difference to my day to day living.

    So please look at hospitals and clinics in your area and ask your G P for help to try another consultant that has an interest in Chest conditions.

  • I was diagnosed with bronchiectasis 3 yrs ago after a chest infection X ray. I do not get breathless, walk everywhere, play table tennis 3 times a week, and a spirometry test showed have the lungs of a 53yr old, I was 73 at the time. I am on no medication. It costs a lot having to declare it on holiday insurance details, so I have been back to the Dr. to confirm that I definitely have it. The Dr. could not sanction a CAT scan, so another X ray this week. Here's hoping!

  • Hi it doesn't sound to me like you have got it mild is there any way you can change the consultant.

    I'm no consultant but maybe you could mention a course of IV antibiotics. I'm pretty sure that's what they give you if you are admitted to AE with an exacerbation.

    Regards Gordyboy

  • I know how you feel with your gp ,I wonder if they have enough knowledge on the condition. Mine sent me to a diagnostic day care centre last year after failing to rid me of fluid on the lungs ,breathless and chest pain .

    They were brilliant ,tested me for everything. Unfortunately I couldn't cough up the green gunk for analising ,the ct showed I had Bronchiectasis and the results sent to my doctors. I had actually had the wheezing tight chest and unproductive cough for a few years, my cough was always worse first thing .I brought this to the attention of my doctor a few times when I had my diabetes check ups but she always dismissed it .

    I visited last Monday as I couldn't speak I was so breathless. She wondered why I was so breathless ? I've been with her fo 25 years That floored me a little . I insisted I went to see someone who knows more about the condition . She is putting me onto a nurse who specialises in lung condition. It's frightening as I really don't know what to expect with Bronchiectasis.

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