Newbie with bronchiectasis

Hi, I am a newbie here. I had a CT scan following an unexpected bout of pneumonia in May. I got a results letter 2 weeks ago saying I have "a small amount of bronchiectasis" and that I'll be sent to a chest clinic for a full discussion and review. The appointment for that hasn't come through yet so I feel like I've been left in limbo. I have developed a cold in recent days and I'm afraid of it developing into a chest infection because I don't really know what to do. I haven't fully recovered from the pneumonia as soon after I left hospital my 3 kids took chicken pox one after the other and I haven't had the chance to rest. I'm exhausted and short of breath and I don't have anyone to talk to who understands. Nobody has even heard of bronchiectasis, I know I hadn't either until I got the letter.

8 Replies

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  • Hi and welcome, Val

  • Hi Val, Not knowing what it all means is difficult. If you think you are getting a chest infection you need to see your GP to get antibiotics. Also you could try the BLF helpline for more information and support until you go to the chest clinic.

    And dont be scared! I have asthma and mild bronchiectasis and now I have the right medication and know how to manage it and what to do when I have a flare up I can do most things I want to.

    This website has lots of good information

    bronchiectasis.info/default...

    Hope you get some support soon.

  • Hi runragged. I was diagnosed with bronchiectasis 3 years ago. prior to that I had severe brittle asthma all my life. I have bronchiectasis in 25% of both lungs. I knew something was different and told my chest consultant who immediately sent me for a scan. He told as I know my own lungs better than anyone, he needed to find out what was going on.

    I have been told bronchiectasis is rare in people with asthma. The main problems you will face is, if you have oxygen or steroids, they do nothing for it, unless you have a chest infection. What you have got to do at all costs is avoid chest infections. They are now your enemy in a big way. You also need to learn how to clear your lungs at least twice a day. I was taught a different way by a home physio. It is a gentle, and easy, way and does not cause mega coughing and thereby risking asthma attack. It involves breathing techniques, working the secretions up and then 'huffing' instead of coughing.

    My consultant told me there is not much out there for bronchiectasis and as the main thing is to avoid infections, which are very hard to get over with this condition. He prescribes me antibiotics on a permanent basis. That is 1 x 500mg Azithromycin 3 times a week for the rest of my life. Since going on this my chest infections have reduced by half.

    Of course when I do get an infection I am put on a different antibiotic and just stop this one until I am 'well'. It works as a preventative. Some GPs at my practice do not agree and say I should come off it during summer, but my lung consultant, insists this is the best thing and I have to agree with him. It took quite a few hospital letters to get it on repeat for me at my surgery,

    The main thing is, do not worry about it, keep your lungs clear as much as you can and stay positive.

  • Hi

    I have bronchiectasis and was diagnosed 2.5 years ago after a lifetime of chest infections and unable to walk up hills & stairs. I still work full time but it is hard work ensuring I stay healthy. The Dr will decide what medication is best for you but the 2 important things to do are clearing your lungs daily which you will be taught and exercise. Pulmonary rehabilition is the term and you need to ask about it. Ring the helpline and they can talk you through everything. The other thing you need to do is make sure your family help in the house. Supermarket deliveries are also a life saver. Good luck and don't worry.

    Judith

  • Thank you so much everyone for your replies. I don't think I have it too bad if I'm honest, but until I see the chest clinic I won't know the extent of it. I was diagnosed with mild asthma 8 year's ago, but now I'm not sure if I have asthma at all or whether it's always been the bronchiectasis. I have always got out of breath pretty easily but put it down to a lack of fitness. I was also always the snotty nosed kid from no age, and I still can't leave the house without tissues - am I right in thinking that could be connected to bronchiectasis?

    Also, can anyone tell me if it can affect heart rhythm/pulse. I've had palpitations on and off for a few year's now and 24 hour ECGs have shown nothing. When I was sent to hospital with pneumonia I was taken into resus because my heart rate was 163 beats per minute. I was put on telemetry for 2 days and my pulse barely dropped below 100bpm the whole time.

    Sorry for so many questions! I really appreciate you all taking the time to reply to me.

    Andrea

  • Hi runragged - not surprised by your name by the way.

    I imagine you are quite overwhelmed by you new diagnosis. I have had bronchiectasis since I was 5 months old and I'm 60+ now and we have lovely friends on a site I am a member of specicically for bronchiectatics by a wonderful young woman called Angel and believe me internationally there are lots of us. I hope it's ok for me to name this site Bronchiectasis R Us, anything which genuinely helps has to be ok I would hope.

    Bronchiectasis mild or severe is bronchiectasis and our main aim is to clear the plegm from our lungs as if the gunk stays down there it will become infected. By the way have you been referred to a respiratory consultant who has a special interest in cystic fibrosis/bronchiectasis. Check it out online at the hospital you have been referred to or Dr. Foster. It should list all respiratory consultants but also list their special interest i.e. cf/bronch. Try to make sure you get a referal to one of these. When you see your consultant he/she should offer referal to a repiratory physiotherapist, who will show you different techniques for clearing your lungs and probably show you gadgets which help such as the acapella or the flutter. Personally I do postural draining with percussion and use an acapella at the same time, but everyone has their own preference as to the technique which works for them. If they don't offer physio referal please ask for this.

    As Lynnalyson has mentioned many bronch have prophylactic antibiotics, often Azithromycin 3 times a week. Personally I don't get on with them, but many peeps sware by them, so that might be worth a discussion.

    Lots of us nebulise a bronchodilator followed by normal saline or hypertonic saline so if your consultant suggests this it is a frequently used medication and can assist in getting up the gunk.

    The only thing you can do at the moment if you think you have an infection is to go to your gp and get checked out.

    A lot to take in sweet at the moment, but just try to get to know as much as you can so you can help yourself.

    Many of us who have had time to get to know our bronch have antibiotics at home which is very useful as infections can and often do rear their ugly head over the weekend or holidays. I also have specimen pots and microbiology forms. If I feel I have an infection I try to get a sample down and then start on an ab. The sample is useful for 2 reasons 1. The ab chosen may not be the correct one. When the sample has been cultured in a lab and the results are back you and your doc will then know what antibiotics the nasties are sensitive to. 2. It gives a pattern for your medics as to the usual bugs you grow.

    Enough I think for you to digest. I hope I haven't overloaded you. Just trying to help a fellow bronch.

    Please let us know how you get on.

    With love

    xxx

  • ps - I have asthma too - lots of us do.

    Love Sue

  • Hi, me again. I too have the heart rhythm/pulse. I have just had scans, a 7 day heart monitor and ECG. The heart consultant told me I have a healthy heart with no sign of problems but my heart beats an extra beat now and then which is why I am getting palpitations. It is compensating for my lungs. He said it is nothing to worry about and a very lot of people get this. I would imagine your heart is doing like mine is, so relax! He said there are pills I can take if it annoys me too much but I figured whats a few palpitations in the grand scheme of things and I take enough meds as it is!

    I am currently waiting to see yet another consultant as my GP now informs me I have hyperparathyroidism.....the cure for which involves surgery to the throat. As my lungs collapse if I am intubated....my chest consultant says I may not be able to have the op. But hey ho! Oh and yep I am the proverbial snotty nosed kid too, always have been,(I wish I had shares in Kleenex). I take antihistamine all year round, prescribed, to help. It's all part and parcel I reckon.

    But you know, there is always someone worse off and we are still here!

    Keep smiling, laughter really is the best medicine!

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