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Bronchiectasis

Posted , 20 users are following.

sarah20056
sarah20056

Hey..I have bronchiectasis and live in the UK..is there anyone else on here who lives in UK as I have never spoke to anyone about it before..

3 likes, 54 replies

54 Replies

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  • broadsword
    broadsword sarah20056

    Posted

    Hi Sarah

    There’s plenty of us in the U.K. but often not diagnosed well. If you’ve any questions, I’d be pleased to help

    Best wishes

    Brian

    • sarah20056
      sarah20056 broadsword

      Posted

      Hi

      If you look in the discussion I have posted again about when I was diagnosed etc..just really after advice on keeping well if possible and others experiences with bronchiectasis

    • Apple63
      Apple63 broadsword

      Posted

      Hiya. New to this forum. Am I correct in saying that people with Bronchiectasis can have bad breath? Do I need to see my GP?

      Regards.

      Ian.

    • Jockeys
      Jockeys Apple63

      Posted

      Morning Ian,go see the doctor and explain .I had the same problem with bad breath due to lnfections all the time it’s all the pleym  in your lungs it don’t help. Coughing up pleym all the time .I have been on azithromicym 3 times a week and it helps keep my  left lung clear of infection and stops having a bad breath .I have a infection at the moment  but it’s this time of year I suffer more ,I have a bad pain in my left lung I think I have pleurisy and will be going back to the doctors on Monday it is so painful but I try and be positive because they are poeple out there in a lot worse situations ,take care 

      Joanne 

    • Apple63
      Apple63 Jockeys

      Posted

      Thanks for the reply and will book an appointment with my doctor.
    • barb1206
      barb1206 Apple63

      Posted

      I Apple63! I used to struggle with bad breath but since I've been drinking kefir every day it is no longer a problem (and I'm SO grateful!).  I drink a smoothie every morning (6 ounces plain kefir, 10 pineapple chunks, 1 cup frozen blueberries and a banana). I initially started drinking it because I have read that the probiotics in the kefir are the best you can get to boost your immune system but a wonderful added benefit is that I no longer suffer from bad breath. Also, since I started the kefir in September of 2017, I haven't had so much as the sniffles. That includes two 3-hour plan trips, 2 weeks living in a house with others with rotten colds and taking care of my snotty-nose toddler grandson. I also am extremely conscientious about using hand sanitizer and drinking 6-8 glasses of water a day, so I'm sure that helps as well. All that said, I plan to continue to include the daily kefir in my "BX routine"...  :=)  I've also found that making my own kefir is much more cost effective than purchasing it.

      Hope this helps... Blessings to you!

  • Jockeys
    Jockeys sarah20056

    Posted

    Hi Sarah ,I have had bx for 3 years now,I try and keep positive and keep healthy ,but it’s very difficult with all the infections I get,I have learnt to rest when I’m feeling ill.i go to the chest clinic every 6 months for check ups and keep up with my breathing technique .I get loads of help on this site and many poeple know what you are going through and give you support you need

    Take care joanne

  • Operalyn
    Operalyn sarah20056

    Posted

    Hi Sarah - I have had bronchiectasis for many years and I live in the UK.

    Have you got any problems or do you just want to say hello?

    • sarah20056
      sarah20056 Operalyn

      Posted

      Hi.. I've posted again in the discussion if u read..any information..advice. .your dealings with bronchiectasis

      Sarah

  • judy09425
    judy09425 sarah20056

    Posted

    Hi I live in the uk I have box for some years u can get a lot of help on here u are not alone
  • joviswoman
    joviswoman sarah20056

    Posted

    Hey Sarah, I've had BX for over 15 years now. Was first diagnosed with just a persistent cough, as asthmatic they thought it was something linked to it.

    Lots of us here in the UK, just have to find us lol.

    Gail

     

  • sarah20056
    sarah20056

    Posted

    I was diagnosed in 2009 when I got a chest infection /pneumonia whilst training for the London marathon..this would have been my first marathon if I'd been able to do it. I was not hospitalised but recovered slowly after being given oral antibiotics and took time off work..had a persistent cough and breathlessness for a few months.

    I made a good recovery and took up running again but no major distances..a couple of 10ks. Then in April 2015 it hit me again and I ended up in hospital for 10 days on IV antibiotics as oral antibiotics had not helped.I got out and decided to try and get back to running when I felt well enough..I ran a 10 k in the August and then the Great North Run in the October in under 2 hrs so not a bad time. I went on to train and run my first marathon in April 2017 which was a great achievement for many reasons. I haven't ran since October 2017..a cough came on and it was a slow decline until I was admitted to hospital in January this year for IV antibiotics once again as oral abs hadn't worked. I have been out of hospital nearly a week still feeling breathless and tired..unable to walk upstairs without getting out of breath.

    I just find it so hard to understand..I feel like 2 different people..when I am well I can breathe normally and run at a good pace and feel fit and healthy. At the minute I don't feel like my body belongs to me. I totally forget I have the disease when I am well!!!

  • sue00942
    sue00942 sarah20056

    Posted

    Hi. Welcome to the forum. I am Sue I am 60 and live in north Wales and I was diagnosed 6 years ago with Bronchiectasis. I was told it was mild and there was nothing they could give me but to come back when it becomes a problem. I am now on an inhaler which really doesn't do a lot to help, but I take it anyway. Lately I have had periods of air hunger which earlier this week I had for 4 hours and was very uncomfortable, but more than that I was starting to panic (I have had a panic attack early in my diagnosis and went to A and E).

    ?I keep an eye on clinical trials of therapies for bronchiectasis.

    ?There are a number of trials still active at the moment : one for stem cell therapy. There are some people dont  support these kind of therapies as they think they dont improve symptoms, but I am willing to see the results and decide for myself whether I want to try such a therapy.

    ?If you google bronchiectasis weekly news and register you will receive weekly updates on trials and general advice.

    When were you diagnosed  and what treatment are u receiving at the moment.?

    ?You will find most people on this site are really great at offering support when you are feeling ill or anxious. Hope to speak again.

     

    • sarah20056
      sarah20056 sue00942

      Posted

      Hi

      If you look in the discussion I have posted again when I was diagnosed and what has happened over the past years.

      I do take azithromycim 3 times weekly..I have now for a few years

  • pam81116
    pam81116 sarah20056

    Posted

    Hi Sarah , I live in the UK and I have BX if there is anything I can help you with ask away.

                  Hugs Pam

    • sarah20056
      sarah20056 pam81116

      Posted

      Hi

      Just after any advice really..I don't want to get as bad as I have this time which I know is difficult! !!

    • Operalyn
      Operalyn sarah20056

      Posted

      Ah well - that's tricky! All the advice given to the general population applies to us. You know - good diet, exercise, no smoking, plenty of fluids (this one is very important - so my specialist said), and when you're tired really rest properly. Take your antibiotics as soon as an infection appears - learn to recognise the signs (not always easy either). However sometimes you get an infection that comes out of nowhere and is just a real tough one and it might take a long time to clear and then a long time to recover from. My doctor always told me that when that happens don't fight it, give in, and you will get better quicker. Which is easier said than done when you are at work or have a family but the more you fight and try to keep going the less energy your body has to deal with the infection. Simple...but not easy!

      I don't take many drugs or use a nebulizer because I am allergic to so many that they make me worse! Simple chest clearance and breathing properly and using a couple of puffers and montelukast at night is just my regime. I do ok - Ive lived with it all my life (from when I was 1) and married (no children), worked, travelled a bit - wish I didn't have it but I don't know any other life.

      Good luck!

    • sarah20056
      sarah20056 Operalyn

      Posted

      Hi

      Thank you..I think the most difficult part is the fact that when I feel well I can run and even trained and ran a marathon last year and then when I get ill I can't even walk up the stairs without getting out of breath..it's like I am two different people.

      I suppose I have to learn to live with this..I do generally live a healthy lifestyle and guess I must continue to do so and listen to my body.

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