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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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  • IdiopathicBX
    IdiopathicBX sarah20056

    Posted

    Hi Sarah

    I am exactly like you. I was born with bronchiectasis 56 years ago and have NEVER met anyone with this in all these years.

    Where in the UK are you ?

    I have just joined the group and posted a message asking the same ?

    • margiesgirl
      margiesgirl IdiopathicBX

      Posted

      Hello 

      just joined this group , I live in the UK (Southampton Hampshire)

      was hoping to find a local support group but unsuccessful currently

      I finally recieved a diagnosis after a 2wk hospital stay on antibiotics

      I came home 2 days ago

      The CT scan should early onset bronchiectasis after having a cough 

      for nearly 2yrs , it's been miserable , exhausting , painful and a 

      productive cough daily 

    • janet24
      janet24 margiesgirl

      Posted

      Hi Margiesgirl,

      I'm the other end of the south coast in East Sussex...Hastings.

      Have you tried to find a Breathe Easy group in your area...? They are run by volunteers and my local one is very friendly and welcoming. 

      I have gained a lot of useful information from this group...

      Hope you feel more stable soon...I had a bad flare up for 3 months Oct - Jan. I know how debilitating it all is and feels.  

      Janet 

    • margiesgirl
      margiesgirl janet24

      Posted

      Hi

      Janet and hello

      I will look up Breath Easy - thank you :-) 

      best wishes 

      Sharn

  • margiesgirl
    margiesgirl sarah20056

    Posted

    Hello

    I live in Southampton (Hampshire) newly diagnosed after a 2wk admission to hospital 

    CT scan showed mild bronchiectasis lord if this is only classed as mild I have huge 

    sympathy for those with the more advanced :-( 

    I have had a cough for a little over 2yrs and it has been quite the rollacoaster getting

    the final diagnosis ...been so poorly with it all , exhausted , chest pain and a productive

    cough

    Where abouts are you in the UK?

  • ron_08501
    ron_08501 sarah20056

    Posted

    Dear All,

    The jis a new drug now being used in the UK.

    my Dr is now giving me:

    carbocisteine

    i have been been much better using this drug.

    6 x tabs a day.

    -------

    • IdiopathicBX
      IdiopathicBX ron_08501

      Posted

      Hi Ron, Glad i read your post. I have been on Carbocisteine for many years and find it does help.

      Just received a letter yesterday from my GP surgery saying they are being stopped. I thought maybe the pharmaceutical company has stopped manufacturing them.

      That's another trip to the surgery to find out the reason. I have severe bronchiectasis in both lungs and don't understand this. Think I'm costing my surgery too much with all the meds I need to take 🤔 . They even tried to change my symbicort inhaler, but a nurse in the practice told me (on the quiet) they were trying to get me on a cheaper brand and to stand my ground So beware everyone, its shocking !

    • Operalyn
      Operalyn IdiopathicBX

      Posted

      They've recently changed my inhaler from seretide to something cheaper. Was very unsure but actually it's more effective. It's called Fostair. I was surprised because I am a tricky customer and allergic to lots of meds. This has worked well.

    • ron_08501
      ron_08501 Operalyn

      Posted

      One of the inhalers I use is Fostair.

      it is very effective. I use it everyday.

    • janet24
      janet24 Operalyn

      Posted

      Yes I use Fostair too.

      I used to be on seritide but asked to be changed because it was a powder type and it was making my throat bad. A few years ago I was told it cost £36, GP wasn't happy about it then but I stood my ground. 

    • IdiopathicBX
      IdiopathicBX janet24

      Posted

      I'm still struggling with replying to everyone on here ha.

      Hey- that's great if it is working well for you, we all know our own body don't we?. I wasn't having any problems with symbicort , nurse said she thought I would be better sticking it xx

    • janet24
      janet24 IdiopathicBX

      Posted

      It's the flare ups that are hard for me to cope with. Inhalers seem to have nil effect and then it's the cycle antibiotics and steroids. 

      Roll on better weather....

    • IdiopathicBX
      IdiopathicBX janet24

      Posted

      Oh....i only need inhalers for my Asthma which i can control.

      As you say it's coping with the never ending flare ups and infections...

      Yeah- cant wait for the better weather Janet ? xx

  • Guest
    Guest sarah20056

    Posted

    Hi, Your comment about feeling as if one is two different people is something that chimes with me. I really do forget.....then WALLOP!

    my only advice is to join al forums going and log in, even when we are well. Then that support system is in place for when we Really Do Need that tic, that sadly is vital to get us back on our feet.

    I've had to stop running, but lots of people manage quite severe bronchiectasis ...and running. Pick their brains!

    Hope this helps

    • Operalyn
      Operalyn Guest

      Posted

      Great post!! I have had BX all my life so know no other but even I "forget" sometimes and can't understand why I am so tired or something .. Funny old complaint! Just keep pushing it to the limit but know when to rest... I am still learning, aged 70.

    • janet24
      janet24 Operalyn

      Posted

      Morning everyone!

      I so agree...when I'm well (well more or less!) I'm on top of the world but when I go downhill so quickly it's like I'll never be well again. So yes...we have to make the most of those times. 

      I've had a poorly chest probably since the age of 4 with whooping cough so coped with things throughout my life...but this latest Bx hit me pretty hard...the word 'progressive' frightens me!! cry 

    • Operalyn
      Operalyn janet24

      Posted

      Every case is different. Some progress very slowly! I went through a bad patch in my 30s but my condition has been stable for years. Don't trouble trouble until it troubles you! But do get help when you're poorly.

    • janet24
      janet24 Operalyn

      Posted

      Thanks Operalyn you're exactly right of course. I think it's because my mum died of emphysema. I know I don't have that condition but that is the worry for my family when they see me so poorly. 

      I have a good consultant but have lost confidence in the GPs....    

    • Operalyn
      Operalyn janet24

      Posted

      Completely understandable. I worry about emphysema too. But bronchiectasis doesn't necessarily lead to that so let's hope you don't go down that road. Xx

    • janet24
      janet24 Operalyn

      Posted

      Oh I wasn't thinking along those lines...but I was told that Bx unmanaged can become COPD. 

      Thanks for your support. xx

       

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