Struggling with bronchiectasis

hiya glad to have found this site after months of stuggling on, I was diagnosed with bronchiectasis a 6 months ago and was just sent home with a leaflet, for the last few weeks I have had a nasty chest infection and have been on antibiotics and steroids, my follow up appointment with my consultant got cancelled by the hospital and I am still waiting for a new app 2 months down the line. I saw my doctor again today and he has said I need a nebuliser and daily physiotherapy asap but the hospital need to organise this. Fed up at 37 yrs old of wheezing non stop and having a nasty cough that's hurting my throat and ribs. Sorry to moan but any advice would be massively appreciated x

23 Replies

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  • Hi Claire, and welcome. I haven't got the same problem as you so, can't really give advice but there are plenty of members on here who do and I'm sure you will have some replies shortly.

    It's a good forum, with lots of support and advice from people who know what your going through so, stick around, someone will be along soon.

  • Hello Claire good to meet you welcome aboard the lung express haha.This is a great site with lovely followers with so much help info,support and the odd smile or two.I dont personally know of your particular disease but we have lots here that have it and some have been living with it since they were babies,Im sure they will be along shortly.Hope to see you soon feel free to ask anything,or give the Blf a call they are lovely to talk to if your worried at all. :) Janexx

  • Speak to the BLF helpline, they will be able to advise you what to do. Best of luck and stay well, if possible. xx

  • Hi Claire. I have bronchiectasis, and it certainly isn't a walk in the park. Have you thought of phoning the consultants secretary and asking her to sort out your appointment? The phone number should be on your letter. you could also check this with the blf helpline. Good luck

  • Hi Claire and welcome.

    First of all don't panic. You may have only recently been diagnosed but you have probably been living with bronchiectasis for a long time as it is damage to the lungs caused by a trauma such as whooping cough, pneumonia or as in my case 'nobody knows' often in childhood.

    I am 64 and have had extensive bronchiectasis since I was a baby. I have two children and am still living a full life. I have what they call exacerbations when it plays up and I then have antibiotics. Also I have had nebulised antibiotics and inhalors, depending on the different bugs which grow in the fluid which collects where the damage is in my lungs.

    it is important that you take charge. Needless to say a healthy lifestyle and no smoking or or other people's smoke.

    Taking charge also means that you need to do your own physiotherapy every day to get rid of the stuff in your lungs and with it the bugs which make you ill. You may be one of the lucky ones who don't produce much or any sputum. If so, congratulations you are winning already. I have always produced a lot of the stuff and managing it is just part of my life.

    I suggest that you learn as much as you can about your condition because unfortunately most medics know very little and the emphasis in the government and medical circles is on copd.

    Do find out if your consultant specialises in bronchiectasis or simply deals with lung conditions generally as it is very specialised and every one of us is different. Insist that you have time with a physio who can show you good methods to empty your lungs. Ask what your treatment plan is (that usually throws them but they should give you one)

    It is the exacerbations which knock us sideways so you will need emergency antibiotics to keep at home, agrred with your consultant and GP.

    Then, once you have organised your treatment and living plan, just get on with your life as you were before the pesky little devil decided to play up. You are not on your own, there are a lot of us out there and the good news is that you can live a full life with,it.

    good luck

  • Beautiful put, and yes it is the exacerbations tha knock us for six, have a good day .

  • Couldn't have put it any better, I've had it for 65 years, ring the consultants secretary as above, take vit D to boost your immune system. Good luck P.x

  • Well said thanks xx

  • Hi Claire I do have the same illness plus asthma and COPD, I know how your feeling and being so young, what support do you have from family ? Is your doctor good with you, your doctor can get you help with respiratory nurse to come into your home and they can do quite a bit to help you, and anther support for you,ring up the secretory off the consultant speak to her or him they can sort out appointment,s, have they told you what stage you are at, if not ask don't be afraid, there are meny on here who are very helpful and kind, drink loads of water to help the lungs from sticking, nubuizers you can get on the internet or from your respiratory nurse,ok love there's a bit to go on with keep your chin up your have good days and your have not so good days we do learn to go with the flow, speak to you soon Lyn x

  • Hello Claire

    Sorry to hear you have this unpleasant condition. I'm 80 and I was diagnosed about 6 years ago. I had been unwell and on different courses of antibiotics, and then I coughed up a fair amount of blood! shock, horror, never had anything like that before. Dr sent me for a bronchoscopy and ct scan and given diagnosis. Not a helpful consultant, my husband asked about physio and she said Oh you can try that. I do breathing exercises religiously every day and it helps to clear the lungs. so far I have managed without hospital visits, travelling is difficult now. doctors seem not too knowledgable about the condition and not always understanding about holding antibiotics in reserve and getting sputum tests. The hardest thing I find is deciding if I have an infection when I have an increase in sputum. sometimes it clears up without and antibiotics have their side effects.

    but you have youth on your side so fight your corner and find good doctors who understand this unpleasant but mostly tolerable condition. this site is so helpful, with lots of people struggling with very difficult health issues in a positive way.

    Good luck, Iris x

  • Hi Claire. Welcome to this friendly site - I'm glad you have found us. It is a shame consultants don't give the web address to everyone diagnosed with a lung condition, as well as the near useless leaflet. It is important to get on top of your current infection, so if the antibiotics are not working you may need different ones. You do need to harass you doctor sometims. The same goes for the consultant. When I have spoken directly to a consultants secretary I have found them invariably helpful.

    When you are on top of your current problem, you need to be looking at longer term management of your condition. It is important to dop the underlying problem in the lungs getting worse.

    Many people with broncheictasis are on long term antibiotics. Usually azithromycin, taken three Tims a week. This is useful because it has a side effect of reducing mucus production as well as stopping many infections before they get hold. Chest physiotherapy is useful too. I was offered this as soon as I had my diagnosis. The physio taught me how to breathe and 'huff' to get as much mucus up as possible. The less mucus there is in your lungs, the less chance there is of an infection settling in there.

    I note that you say you are wheezing - are you sure bronch is your only problem? Don't wish to worry you too much but many of us have asthma or COPD as well, which are more usually a cause of wheezing than bronch. Your consultant, when you finally get to see them, can discuss this.

    Good luck.

  • Hi,I noticed you said u have to have nebulizer,well I've just started on one 2 day,band my life has changed for the better,so keep going forward ,buy your own from the chemist,they will help you,..waiting you never know how long..better to get on with it then see how you feel ,all good.

  • Hi Claire, I too suffer with bronch, it is awful at times and can be hard to know which way to turn. At the moment I am recovering from yet another infection. I have emergency antibiotics which do help, but it is hard to know when to start them as it is a fine line telling if the infections are taking hold. In my case I usually start to cough a lot and the mucus turns to a green colour. All of us are different so your symptoms may be different. It is important to try and not get too down about the condition, but it very hard not to. Family do not always understand how hard it is to cope with this condition. This site is a great place to be involved with, I have had a lot of help from people on here. Take care.

  • Hello Claire, yes it is a it struggle to begin with but try not to worry as you will learn to understand and know what to do. There are 3 important things

    1. Medication Your g.p. will prescribe emergency antibiotics and steroids for you to keep at home, so that you are able to start them as soon as you feel an infection coming on Gradually between you, you will work out which ones are best for you.

    2. Sputum samples, again g.p. will send them to the lab. to make sure you have the correct antibiotics.

    3.Excersise. G.P. should be able yo give you number for you to refer yourself. They will help with breathing techniques to help remove the phlegm and general excersises.? I w lucky enough to be referred to gym by them as I improved. There is a course called pulmonary rehabilitation. Again your g.p. should refer you for this.

    So you see there is lots of help for us, but you may need to nag, depending how good your

    G.p. is.

    Any problems there will always be someone on hear to listen and help. Aldo the BLF line has very good nurses at the end of the line. Good luck and hope you will soon be feeling better, barnowl

  • Hi Claire, sorry I should have said as regards exercise g.p. can refer you to local or community physiotherapists. Take care barnowl

  • Hiya welcome Claire I'm very new aswell on this site, o have copd so as I can't advise you, I sure know you'll get loads of help here,its amazing the help I've had in a very short time. Big welcome to you love Angie.

  • Hi Claire nice to meet you. I have COPD so can't really help but you have had some excellent advice on here. Take care. x

  • I get similar pains when I have an exacerbation

    Sending you home with a leaflet is so insensitive!

    You need support and management

    I am in Australia so have different system but you deserve better than this

    It is also imperative, especially at such a young age that you slow down and manage the progression of Bronchiestasis

    By the way you are not whinging

    This is a frustrated cry for help

    People on here are great so hope you get some timely advice

  • Hi Claire,

    So sorry to hear of your diagnosis of Bronchiectasis. I was diagnosed several years ago. At first was diagnosed with asthma, but after a stay in hospital with pneumonia, my GP referred me for lung function tests and CT scan. The result was Bronchy!! The constant chest infections are a pain, can your GP not try to hurry the new appointment up. Has he/she given you inhalers? Although I have a consultant, my GP gave me Spiriva, Seretide and Salbutamol. I don't know which anti biotics you are taking, I usually have Amoxycillin 500 (14 days supply) along with 5 days on Pred. Now I am also on prophylactic Azithromycin. I take it on Monday, Wednesday and Friday, to try and keep infections at bay. I don't seem to have normal infections, just pseudomonas, which requires 14 days on IV anti biotics. Has your GP sent a sputum sample to the hospital to find out what bug you are growing? If not, perhaps you should ask them to. Not all antibiotics are strong enough to treat some of the bugs we can grow. I'm sure if you asked, your GP could refer you for Pulmonary Rehabilitation, to help your breathing techniques.

    Hope some of this helps. Good luck. xx

  • thank you all so so much for all the very friendly comments that have been left, just wish I had found this earlier but will defo be on here on a regular basis now, going to phone the blf helpline for some advice and docs again tomorrow. thanks to all of u xxx

  • Sorry to hear that you have now got bronchiectasis but this set is great I have learned alto form the people on here about bronchiectasis hope help you to Clare21 as help me mean of a time take care

  • Hi Claire, I too have Bronchiectasis, asthma etc. I have been where you stand, read the other posts they have good advice. The only thing I can add is "It gets better" now that you have been diagnosed. Do you have a asthma nurse? if not why not, she will help you with any information you need. I, too, think you should phone your Consultant's secretary, she/he will be able to give you lots of information, information that will help you. On a positive front, I have been well for the past 2 years (I am on Azithromycin). I was sitting in my Consultants waiting room 1 month ago, next to an old lady in a wheelchair, we began talking and she told me she was 89yrs old and had Bronchiectasis since she was 10yrs old. Her daughter was with her and she told me how well her mum kept. This gave me hope as Bronchiectasis is not a death sentence, it is a condition you will have to live with. I refuse to stay at home anymore unless I want to, I do everything I can (by pacing myself) and I enjoy every day. I know you are in a dark place at the moment I have been there, however, you will get better, hang onto that. Good luck and keep writing to us all. Maximonkey

  • You could ask your GP to prescribe a Flutter mucus clearance device. It is available on the NHS and drink lots of water to help thin the sputum. If you can get referred onto a pulmonary rehab course this will help enormously.

    Good luck

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