Bronchiectasis

Hi everyone

just as a follow up from my last post. It's really important to listen to yourself and recognise when you don't feel quite right. I have just been to the hospital as my gp referred me for vague symptoms but also coughing up blood. I was diagnosed with bronchiectasis about 20 years ago and I had been given the impression by another gp that feeling short of breath/coughing up blood/tiredness were just to be expected. Turns out that I have a collapsed lung lobe/cavities/plugs and the consultant said it was a good job I had been referred. I feel relieved and would repeat'you know how you feel and if you are not right push to have something done about it. Have a lovely weekend everybody

29 Replies

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  • I am glad that you found all this out Susan, sounds like the GP that referred you was a good doctor, so try to get him in future

    Love Sohara

  • Thank you sohara I think he will be pleased too because the hospital originally made out that I wasn't an urgent case and he was just being over cautious

  • Glad you know whats wrong now, Take care and get well soon. M

  • Thank you mocarey

  • Hi Susanlu. A good reminder to all of us. The trouble with a lot of us bronchs is that we walk around slowly sliding downwards and thinking that we can cope. I did that for six weeks at the end of last year when I had an empyema brought about by intreated pneumonia. I hope that you start to feel better now.

  • Thank you it's very true you forget what normal feels like we really need to listen to our bodies. Take care

  • Hi Susanlu, glad to hear you are being taken seriously by the hospital & getting meds to treat your condition.

    Yes, it's true, we must listen to our own bodies.

    I think we all recognise the feeling of just not' feeling right'.

    Sometimes it's a different story get a doctor to listen! If only they would .

    Get better soon 🌻

    '

  • Thank you Jessy. I think I shall be more insistent now with doctors as they don't always know what's best!

  • You'e so right Susan we struggle on in a way the normally fit and well wouldn't. So glad you and your doc are being taken seriously and hope you feel better.

    love cx

  • Thank you so much will keep you informed as to how things go as it is clear that the best way to understand our conditions is by hearing from people with personal experiences

  • Glad your condition had been recognised Susan.

  • Thank you Billie jean

  • How did they treat mucous plugs & cavertis? What are the cause of them. I have just come out of Hospital with Mucous plugs. I am still breathless. Do they ever go away? I was put on very high dose of antibiotics & Saline Neb 4 times aday. I managed to cough up some mucous plugs. But still breathless.

  • Hello. I have been put on antibiotics in the short term to bring down inflammation but are testing for tb or some other nasty infection. Treatment will depend on what they discover

    A broncoscopy has been mentioned but I have to wait and see. Will post regularly on my treatment

  • Thank you as I have been to see my Specialist today. He hasn't mentioned any other treatment other than taking my preventative antibiotics with 1 steroid a day. Please let me know how you go on. Thanking you in advance . Ranworth 12.

  • Will do but may be a slow progress!

  • A thank you for that Susanlu, will keep it in mind, having similar probs; myself.

  • Hi Susanlu :)

    I was very interested to read your Post. I was only diagnosed with Bronchiecasis 4+ years ago but, having obtained certain years of my NHS records from my GP, it shows I've been suffering from this condition (undiagosed!) for about 20 years.

    Recently, I have had 2 separate episodes of coughing that produced a bleed from my lungs. The 1st was really scary, as you'd imagine, and my husband insisted that we call 111. I didn't want them to send the paramedics out, which they were keen to do; I just wanted reasurance and a authoratitve, kindly doctor to talk to. Of couse, if the bleeding had persisted then of course, I would have gone into A&E.

    I have an amazing consultant and when I told him the next morning what had happened he arranged for me to have a CT Scan, an HRCT angiogram and I was admitted as a day patient for a Bronchoscopy that week.

    I had to stay for 2 days in the end, as my consultant found the reason for the bleed had been a severe inflammation in my middle right lobe and he wanted me to go on to a particular IV antibiotic for 48 hours.

    I have had a 2nd bleed since coming out of hospital and am now waiting to go in for a very special type of scan at a hospital I've not been to before, to investigate the 2nd bleed further. I hate all this waiting around, as it makes me nervy so I try to keep busy - thank goodness Xmas is close by and there's a lot to do :)

    I'm also waiting to start my 1st course of Colistin (yes, I've got the dreaded Pseudomonas) but my consultant wants to deal with the bleeding before he/we tackle those horrid little ....

    You are so right when you say 'listen to yourself and recognise when you don't feel quite right'. I think we know our bodies better anyone else and we should take heed.

    I'm interested to know how many of us have these bleeds?

    Thanks for your Post Susanlu and have a happy weekend :)

  • Thank you for all that information. I had terrible bleeding about 8years ago and went to a and e. They kept me in hospital for a week treating me for pneumonia. I remember the nurse at a and e who looked about 15 telling me not to cough up blood as it was literally going ever where, as if I could do anything about it! I think they kept me in hospital because they thought I had a pulmonary embolism though I gleaned that from listening to various doctors. Nobody actually said that to me. Recently I have been coughing up blood a number of times. I have been put on azithromycin to bring down the inflammation in my lungs and will now wait for result of sputum tests to see whether this is tb or Mac. I am in a bit of shock but in a strange way it is comforting to be able to hear similar stories and know its not the end of the world. Please let me know how you get on. I shall certainly keep people informed as to what happens to mem

  • Hi Susanlu - thanks for replying :)

    Interestingly, my consultant queried my bleed as a possible pulmonary aneurysm.

    Yes, I was tested for TB too. What is Mac?

    My consultant put me on Tranexamic Acid 500 mugs - 1 tablet three times a day for a week to stop the bleeding.

    I've just put in another sputum test and will wait for that result plus the date for the next scan. We do seem to spend a lot of our time waiting, don't we?

    I'm on Azithromycin every November to April to protect me throughout the winter months. I take one 250 mg tablet three times a week.

    Keep well :)

  • Hello covenham

    Mac stands for mycobacterium avium complex think I've got that right. This is a bug that is everywhere and generally people with a strong immune system just fight it off /live with it. For people like ourselves it is dangerous. From what I understand, if this thing is not tb then I shall be put on intravenous antibiotics for 2weeks to kill off Mac. The positive thing is that I shall not have to stay in hospital but have the procedure in outpatients. Fortunately I live only a short bus journey from the hospital. I've never heard of tranexamic acid. Is this a short course? Do you have any side effects from azithromycin? I had to have an ecg before I could start the course. Enjoy the rest of the weekend

  • Hi again :)

    Thank you for telling me about Mycobacterium Avid Complex, which I'd not heard of before.

    I have a very weak immune system anyway Susanlu, as I had MeningitisEncephalitis four years ago and was seriously ill. I had to stay in Isolation in hospital for two weeks; I now have M.E. as a result!

    I'm going on to Colistin (a very aggressive antibiotic to get rid of the Pseudomonas), which I'll have as an out patient too but it''s been decided I'll be taking it via a nebuliser now instead of an IV.

    Do you know which drug you'll be having as an out patient? We only live 15 mins from our hospital as well, which is lucky :)

    The Transexamic Acid was just for one week to stop me from coughing up blood and it worked, thankfully. No, I don't have any side-effects from the Azithromycin.

    I hope you enjoy the rest of your weekend too :)

  • I take Colomycin by nebuliser. Is it the same as Colistin & what is it for? I have Bronchiectasis & Aspergillus.

  • Hi ranworth. Colomycin, Colistin & Promixin are all the same drug. I nebulise it too. I have the Promixin brand because it's a condition of being loaned an I-neb that you have that brand.

  • Hi Hanne

    I use Colomycin permanently as I have back to back infections with suffering from Bronchiectasis for 22 yrs. Could you tell me what condition you suffer from and for how long you have to use Colomycin? Thank you

  • Hi ranworth. Yes, I have bronchiectasis too, 21 years. Have been nebulising colomycin for about 7 years. I also nebulise 7% saline.

  • Thankyou

  • I personally can't answer that question as I haven't been on these particular drugs but hopefully someone else reading this can. I don't know which drug they'll put me on if it turns out I Have Mac but will keep people informed

  • I have slight bronchiectasis  and a collapsed right middle lobar.i was diagnosed last year after suffering persistent cough and coughing up phlegm on a daily basis for a few years my GP had put me on asthma inhaler 's and other treatment that did not work.  When I was diagnosed the specialist said I didn't need any treatment to go back if I had any more problems. After 9months I had a really bad bacterial chest infection and was put on antibiotics and steroids. I then started to cough blood up so ended up being referred to the chest clinic again. I have just had my results from the CT scan  and nothing has changed. I have been discharged again but I am waiting to have the breathing tests.  I feel so worried about the lung collapse when I asked the doctor just said it could right itself. As anyone else had this.

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