New Bronchiectasis looking for advice

Posted , 13 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

HI im a 44 year old lady who has has been told I have bronchiectasis ,I have felt unwell for 2 years ,and had test after test,Im feeling a bit overwhelmed and a little upset ,has anyone got any good advice and tips how to keep well and healthy as possible

 

1 like, 28 replies

Report

28 Replies

Next
  • Posted

    Hello there,

    Look on the positive side, you have now been diagnosed so the next thing to do is allow yourself to get used to this and the next step will be to see how you can help yourself.

    I've had this for 40 years now and still learning all the time.

    Everyone is different with their symptoms, but you will learn how to cope with them. When you are feeling exhausted try to rest. If you are working this isn't always easy.

    If you cough up a lot of phlegm, as I do, I find using a salt pipe (15 minutes a day) helps to loosen it up and then I use an Acapella to help me cough it up. The Acapella works like someone doing cupping on your back.

    You will have good days and bad days so when you are feeling well make the most of it.

    There are an awful lot of us about and you will get some great advice from this site. Adapt some of it to suit yourself. 

    Most of all, carry on enjoying life. Don't let it get you down all the time (we all have those kind of days/weeks). You will learn to live with it.

    Take care, Anne xx

    Anne xx

    Report
    • Posted

      Thankyou for your advice ,I will look on  the positive side ,it could have been worse ,The salt pip sounds like a good idea ,I will give anything a go try to keep myself well ,do you know if the acaplla is better than the flutter or it a personal choice .

      Joanne x

       

      Report
    • Posted

      Hi Joanne, 

      Didn't mean to sound harsh but we both know that it could have been a worse diagnosis.

      Anyway, I think the salt pipe is a definite. If you look online (we can't mention brands) you will find some. They're very economical too. 

      I use an Acapella as I find lying down helps to bring up the phlegm. I lie on my side on my bed with a couple of pillows/cushions under my side so I am tilted with my chest lower than my legs (this helps me to cough/huff up the phlegm a little easier. I used to use a Flutter but had to sit up to use it but the effect is still the same - personal choice I think. I do this every day and if I've developed an infection and I'm on my antibiotics I do the routine a least twice a day. It does make me feel much better. As there are no side affects with these it doesn't matter how much you use them.

      I also find damp weather makes me worse so I try to stay in when its raining.

      xx

       

      Report
    • Posted

      you have great and you havent been harsh at all  you have given me some sound advice and im going to buy both prouducts ,
      Report
    • Posted

      It might be worth looking into with my doctor I have a appointmet with him next week to book in for physio and get my flu jab.

      x

       

      Report
    • Posted

      DQ, Russ here. Hope you are well as it seems by your letter. I have question for you. You have had BRX for 40 years. I have had it, at leasted diagnosed for 10. I'm 69 and have not really had much trouble except in the past year and a half. In fact I wasnot aware that I really need to do anything special to keep myself healthy. I can not explain that way thinking with any sort rational thought.

      The quation is that I had been having frequent infections (as I think you have read) before starting AZ.

      The thing is I am beginning to feel sort of sick again. or maybe it's really more fatigued than I have had since beginning the AZ. 

      I use my NS nebulizer 2x daily and have begun to have more asthma so am also using Ipratroium 2 to 3 times daily. I use my staionary bike to exercise 3x per week and also do stretching and lite weighs in the mornings.. 

      Im wondering if you have any ideas for me. One thing I am thinking is that I might need to change my diet, maybe completely.

      Glad you are seeming well and thanks for your inspiration .

      Best

      Russ

      Report
  • Posted

    Hiya I'm 51 and had all my life . I don't know any different. Keep warm especially in winter as if cold gets on your chest .. rest alot when tired. Apart from that you can lead a normal life .. keep well x

    Report
    • Posted

      Thank you ,I find last winter was hard but your right ,keeping warm is a good idea,I try to rest but with a 14 year old son ,and a pretty demanding job its a juggle ,I am going to keep postive and try and cope the best way I can with lots of laughing on the way

      take care

      Report
    • Posted

      Yes definitely a juggle job.. I got 3 children ( well all grown up left home now ) so I know how hard it is.. when I was poorly I used to stay in bed (. Sometimes they had day off .yes I'm naughty ) but seriously as long as you rest and as soon as you feel poorly get to doctor for antibiotics. Try and deep breathe to stretch your lungs .. take care too x

      Report
  • Posted

    I've had it all my life too. Don't worry too much, at least now you know what the problem is. The main effect I think it has had on me is tiredness and of course coughing, I really don't mind or notice the coughing. 

    But for tiredness, let yourself rest, go to bed at 6pm as soon as you get through the door if you need to or all day if you have to and you can and never feel bad about it. 

    I have never been able to have a full time job because I get too tired, when I realised it was never going to work and I stopped being so hard on myself things were better all round. So maybe you'll have to make some adjustments to your owrk schedule, now or some time in the future.

    Having mentioned resting, one thing that worked amazingly well, and made me feel more normal than I ever have in my life before, energetic even, was the NHS rehab program. They do one hour of information and talks, and one hour of exercise, twice a week. As a newly diagnosed person you will probably benefit greatly from the information, you will get a chance to talk to a physio who knows about lung conditions, though they might not be an expert in bronchiectasis

    Then the excercise class itself is great. I was expecting somethng like light aerobics but it's just like having your own personal trainer, they make you work as hard as you possiby can and get your heart rate up with lots of cardio as well as recommending weight machines. I was nervous as I knew I would be exhausted the rest of the day and the whole of the next, and that did happen but miraculously after a couple of weeks I was just tired directly after, and felt so much better. 

    So please ask about that, try and get your specialist of GP to refer you, there is a bit of a waiting list usually. 

    And I second the use of a salt pipe, I use a nebuliser for saline, it does the same job. I found it appallingly hard to do my physio until I got that and it really helped.

    xxx

    Report
    • Posted

      Thank you for your good advice ,I do try and execise eat well ,the eating can sometimes be a problem I dont always feel like it ,the salt pipe does sounds a good idea and im going to give it a go
      Report
  • Posted

    Hiya,

    This is overwellming at frist but you will be okay, when you get it under control,all the advice you have gotten is great,we all hve been there so read all the past forums to learn and to try,such as the nebulizer,I use Sodium Choride ( which is Saline ) and if need be after that to help open your airways Albrutrol 3.5% followed by Symbicort twice a day,ask your Doctor first about all that you read that we all try first as we say we are all different.

    Also if you read about Azithromycin which alot of us are using has been a big game changer for alot of us,but as always ask your Pulmonary Doctor about it first as I did mine and what made them give it to me is I printed out alot of the response on this site for them to read.

    So you will be fine by just keeping it uder control stay well.

    Regards,

    Charlie

    Report
    • Posted

      Thank you for the advice and i will ask my doctor about saline and azithromycin.Everbody has been so helpful and it helps talking to people to get sound advice

      take care Joanne

      Report
    • Posted

      Just a quick caution about the azithromycin. It is an antibiotic and I wouldn't rush straight into taking a long term antibiotic for the rest of your life without seeing how you go first.

      It has been very helpful for some people but for me it produced side effects I didn't like and I wasn't too sure of its efficacity. You can also become resistant to it so maybe save it in the arsenal for later.

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up