Bronchiectasis

Dear all

I am a 61yr old female who's officially had Bronchiectasis for 3 years .. although know now I had it for longer. One of my main problems is telling when I'm infected as don't always feel the symptoms match up to what am told. Also it wasn't until last week it was explained to me that it's normal to feel tired and anxious with the condition... in a strange way this helped .. as have been feeling abit pathetic and it's my personality not handling it very well! Can anyone else relate to any of this?

25 Replies

oldestnewest
  • Hi

    Some light reading for you.

    bronchiectasishelp.org.uk./...

  • Thanks Stone.,.what a great booklet! Never seen anything like it before for bronchiectasis. Whilst I knew most of info, there was the odd snippet I wasn't sure of but overall so good to have it all so well summarised and beautifully presented. Can't imagine where you found it! 😀

  • Hi

    It's been around for some time, if you save it, it will up date as when required.

  • Hi Stone

    Thanks very good booklet covers everything you need to know.

    Regards

    Sisterbird x

  • Thank you for posting that link - very useful!

  • yes I can it took ma long time to realize 😊 xx

  • Thank you....so good to known that! X

  • Thank you x

  • Thank you x

  • Hi I think anyone would find this all very difficult to cope with so don't knock yourself for feeling like this. There are a number on here with bronchiectasis whom I am sure will come in soon especially StillStanding and O2trees, who are very knowledgeable and helpful.

    Stone is our oracle and can always be counted on to point you in the right direction. x

  • Thanks for that Cough but I really don't compare to StillStanding who has been dealing with it for most of her life.

    Winter, I do have bronchiectasis but like yourself, diagnosed recently, just a year ago. I was already getting the kind of symptoms you describe as I also have copd and asthma. Tired certainly - don't beat yourself up for that, just try to rest whenever you need too, guilt-free. Sometimes i have sofa days, just getting up to eat. Some days are better. And it's hard not to get anxious especially about the future when you have this kind of diagnosis - I try to live in the moment, or at least the next week :D

    You don't mention what healthcare you have. Bronchiectasis is less well known to the medical profession than copd for instance. It's important you have a consultant who knows about it. Think about calling the BLF helpline (03000 030 555 - office hours) if you want to talk anything through - they are very knowledgeable and helpful. Good wishes to you :)

  • True O2 but what I meant was that the 2 of you especially always come in on bronchi posts and are very helpful. I know SS has been dealing with it for many years so she is the most expert and knowledgeable. x

  • That's so helpful to know! Xx

  • Thank you x

  • Sorry keep in trying to thank coughalot2 and so far have sent 3 replies to Damon 1864

  • Hello winter, I think you were here a few days ago - it's nice to see you again.

    I've got COPD not bronchiectasis but a lot of the problems are common to all lung conditions. Yes, it can be really difficult to be certain if you've got an infection, yes I get tired lots and I feel anxious and pathetic. I know many more people feel the same, but it's not always like that! And I do think it helps to know all these things are 'normal'.

    Enjoy stone's recommended reading and come back soon.

    Sue x 🙂

  • Thanks ...yes good to give yourself ...or try to. ..permission to feel pathetic!! X

  • Hi winter. I am so glad that you have found your way on to this site. There are several of us who have had bronchiectasis for a long time. in my case, as long as I can remember. Since I was 3 and I am now 66. You are right in thinking that you probably had it for quite some while before it was picked up. Those with relatively mild lung damage tend to live with being 'chesty' or misdiagnosed as asthma for years. Those of us who had a devastating episode as children were usually diagnosed then and so have a lifetime's experience of managing the condition. As I call it, The Gob Boggart within. We are all different and recognising when you are getting an exacerbation can be difficult. Thick, dark sputum in copious amounts is usually the accepted sign. However, there are some of us who produce a lot of sputum every day when it is not necessarily full of the bugs. Haemophyllus and Pseudomonas being the main culprits. Generally speaking, if you have any of those signs and feel generally more unwell than usual,it is probably time to start the antibiotics.

    I am sure that you have been told that emptying your lungs every day is vital. Try to do this to a timetable that suits your body and so that it doesn't interfere with you going out and enjoying your social life. Get as much exercise as you are comfortable with. Try to eat well

    Stay OUT of other people's smoke

    Stay AWAY from other people's germs as much as possible.

    Bronchiectasis can be exhausting, particularly on the day after a particularly busy day.

    It can also make you feel very down. It is the sheer relentlessness of it. Especially if you have exacerbations close together. Some antibiotics can make you feel depressed. I am in my second week of cipro at the moment and feel like burying under the duvet. I didn't. I took the dog for a walk around the village instead.

    I'm afraid that most GPs and even many consultants have very little knowledge of bronchiectasis. This is why most of us on here have learned so much about our condition and badger and guide our docs into giving us the treatment we need.

    Do feel free to ask us anything

    Remember, you are the same person that you were before they attached that name to you. Only now you can begin to take charge of keeping yourself well.

  • Thank you so much for your long and helpful reply! Yes , as you say, I was chesty for 2 -3 years, getting infections, being diagnosed with asthma. Had an endoscopy as GP thought a hiatus hernia/ acid reflux was making my "asthma " worse. Then she referred me for another endoscopy to see if I had voice nodules due to a croaky voice when the ENT noticed me coughing a lot. He referred me for a CT scan where a partial collapsed lung was diagnosed. It was then I saw a respiratory consultant who diagnosed it and I started physio.

    After that , had a reasonable spell but from Feb 2014, was having infections every 7 weeks. Also for 6 months of this time I was chronically infected without knowing it, realised it by talking to a friend of my sister in law who's a respiratory nurse 200 miles away. My GP was totally dismissive of bronchiectasis, said my fatigue was due to ME and I was obsessed with my lungs!! Also I was prescribed amoxicillin 1000 each time by the consultant. A very strange thing happens though...to date no one really knows why.....but on day 10 when I am clear...I get like a bad chesty cough/ asthma . It's been suggested it's perhaps acid reflux , although I increase dose ( am in a muddle re this but will post another time!) on antibiotics. The consultant said to take a high dose of prednisone for sometime. As soon as I stopped prednisone, the infection came back with fury.

    Having not been away for so long, last summer we decided to risk Spain in our caravan..even though I was just at end of amoxicillin course. Had usual reaction on day 10... peak flow dropped a lot, felt abit scared. In desperation ( too complicated to seek Spanish medical help) phoned the Asthma society. Poured it out to a wonderful nurse who said I shouldn't be constantly getting infected, taking prednisone which was lowering my immune system so infection came back. She strongly advised me to go to Royal Brompton, which I did in June, as I'm entitled to do so.My consultant never uses amoxicillin, prescribed levofloxacine which is best for bacteria H I. To have doxycycline as main one now but rotate with levofloxacine or co amoxiclav if infections are too close together. Also use hand gel to avoid infection. He saw the previous CT scans I'd had and said it was in 3 lobes not 1 as previous consultant had said ..interesting how previous consultant came up with different verdict from same scan.

    Anyway am delighted to be seen at Royal Brompton. It is a long way from where I live , hard to do trip in a day. I suppose I still feel there's so much for me to learn re the management of it. Spotting infections, accepting its to harder to go at the pace I used to, and basically feel confident am doing the best I can. Also I probably am too perfectionist re physio trying to get it all out, which I suspect may make my airways more inflamed. Physio implied that ..,yet at same time I need to get it out. Also have changed GP..Definitely a good move, despite never having changed in my life before!

    Will stop now...am sure I sound very anxious about it all! That's why we post though isn't it?! Also now have " introduced " myself and background, no need to repeat it all !

    Thanks for anyone who's read all this. Good luck and love to all us " bronchiectasis folk!" xxx

    Ps do any "bronchiectasis folk" have acid reflux problems, wonder if it's more common with us?

  • Answer to your last question. Yes. I had undiagnosed acid reflux for ten years until my sore aesophagus split. It isn't definite that bronch causes acid reflux but acid reflux can get into your lungs and make them worse/ start up exacerbations. I am permanently on lanzaprozole which I suck and it seems to do the job. I am pleased for you that after such a bad start you now have a really good consultant and a new GP. If the GP ever demurs about giving you anything ( like an emergency pack of Antibiotics) refer them back to the consultant who will tell them what to do. Some bronchs do take steroids if they also have severe asthma but I have never had them. the point about your immune system is a good one.

    You seem to be doing everything right. If you are worried that you might be a bit fierce with your coughing up - have you learned the cycle of breathing which allows you to loosen it more gently or do you have a flutter, acapella or aerosure device? All of these things can help. The main thing is to get it up.

    I can see that you are learning fast and will soon be sharing your newly gained knowledge with us. We are always open to helpful suggestions.xx

  • Sorry .. keep on trying to send reply but it won't post... !

  • Ps think it was too long as these last 2 have sent. In brief... yes have tried acapella but caused problems with dysfunctional eustacian tube as says on leaflet. Do loosening up phlegm in Physio, still don't always get it up but at last visit consultant said to leave saline nebuliser for now due to irritated throat .. it's still a possible future option. Yes am on lansoprazole. Have been on 30 during infection, trying to get back to 15 but taking gaviscon as well due to rebound effect. Not getting on too well at lowering dose! Seems it's all a learning experience so hope to feel more confident and accepting of the condition! Thanks lots for reply and advice x

  • Great reply SS x

  • I have asthma, COPD and bronchiectasis. Saw consultant this summer for the first time since diagnosed with COPD a couple of years ago. I was having an infection every 4 weeks. He did a CT scan and added the bronch to the mix! He also said I have a massive hiatus hernia (I knew I had one but not that it was 'massive') and believes a lot of the damage to my lungs is from 'silent reflux' ie you have the reflux at night without knowing. I have been on Lanzoprazole for years to control the reflux. The past year I have been sleeping with a wedge in my bed which raises my head slightly - better than just a pillow. Also, I am more careful about eating too much - I was taught to clear my plate but now I stop whenever I'm ready to, waste or not. I have found this a great help. Also, I try not to eat too late in the evening and, if I have to eat late (eg eating with friends) I eat less and go to bed later. All these things are helping.

    Like you, I find it difficult to know when I have an infection as seem to have something happening most of the time. The last time I had prednisilone, the doctor advised me to wean off it and I seem to have gone for a longer time since without needing antibiotics. At the moment, I feel better than I have all year.

    This is a journey of discovery for us all, I think, but this site is a great help. Good luck!

  • Thanks Moy for sharing that!

    Yes it is a journey of discovery . I find it hard to think of any other chronic condition that means you have to "do" something every day i.e. unpleasant Physio... apart from CFS, exercises for arthritis ( but maybe they aren't so crucial?) and diabetes injections? Sounds negative and tellmyself constantly how lucky I am in most of my life. I know the 2 things are feeling in control of managing it then accepting it... am still working on them!

    Good luck to you xx

You may also like...