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Bronchiectasis

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savanna60382
savanna60382

I was diagnosed with bronchiectasis when I was 14, I am now 18. I feel like I don't know enought about whats going on in my body, or what bronchiectasis could possibly turn into. I have a really awesome pulmonologist that im going to see in December to clear things up, its just a long time to wait for questions I have now. I was just wondering what other people in my shoes could tell me about it. 

0 likes, 6 replies

6 Replies

  • John_N_B
    John_N_B savanna60382

    Posted

    Hopefully your bronchiectasis won't turn into anything, but you will always have to look after your health. I have been told different things about the prognosis, so I don't think we can be given a definate answer to how the disease might develop. I was diagnosed with it when I was 25. I'm 66 now and still working, playing tennis and riding my bike. Treatment is getting better all the time, so try not to you worry about it. My bronchiectasis is unpredictable. I have only had 2 infections so far this year, but had 4 last year. I was put on Spiriva about 6 months ago and it has reduced the amount of mucus my lungs produce and increased my lung capacity from about 65% of healthy lungs to around 70%. It's amazing what a difference that few extra %has made. I'm pleased to hear that your consultant is good. Keep a record of your health and share it with the consultant so they can review your treatment regularly. Exercise as much as you can, eat well, sleep well, drink lots of water and enjoy life.

    John

    • madeline0505
      madeline0505 John_N_B

      Posted

      Hi John, your comment is innspiring. I am 20 and have been living with bronchiectasis for most of my life-my condition has worsened over the years. I am seeing a specialist who simply prescribes antibiotics and i go for physio but i see no change. Please do share more.
    • John_N_B
      John_N_B madeline0505

      Posted

      Hi Madeline,

      I was taking Septrin for 7 days when I got an infection for several years, and it worked well enough for me to be discharged from seeing the consultant. Eventually it stopped working and I became very unwell. I was referred back to the specialist and he changed the antibiotic, and the course to 14 days. I was worried about building up resistance again so the consultant agreed to prescribe 2 different types of antibiotics, which I alternate. This is working well at the moment. I see the consultant every 6 months. I was seen by a different doctor on my last but one visit and he suggested the Spiriva. This has produced such good results that I asked my usual consultant at my last visit why it hadn't been suggested before. He said it was a new drug, and that he didn't think it was effective. I think this is typical of my experience of bronchiectasis treatment. It seems so random. I think there should be some attempt at standardising the response to the illness, like with cancer treatment. Everyone will need specifc treatment, but it seems like there should be a standard range of options for specialists to use,based on the most recent developments. It appears to be pot-luck at the moment. As patients, we should be pushing for explanations about the inconsistencies. I notice recently that there's a new medical journal for chest diseases. I will contact them about this issue and see if we can get more consistency.

  • madeline0505
    madeline0505 savanna60382

    Posted

    Savanna all i can say is to take full advantage of those specialist because if you neglect or are not properly informed about bronchiectasis it can really dampen your life. You still have hope
    • savanna60382
      savanna60382 madeline0505

      Posted

      Thanks. Do you by any chance know if bronchiectasis can turn into something else, like CF?
  • John_N_B
    John_N_B savanna60382

    Posted

    As I said earlier, I don't think you can be given a definate prognosis for bronchiectasis as there are too many unknowns. If you have had a scan your consultant will be able to show you exactly where your lungs are damaged, and they may be able to give you an idea of how things may develop, but in my experience they are reluctant to do this. For instanc3, after being treated for bronchiectasis for 40 years I was told that I also had some emphasemia.
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