Bronchiectasis

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Hi everyone, iv had bronchiectasis now for 1 and hafe years had to stay in hospital then as got bad infection. Been on lots of antibiotics since then, iv been going back to have 6 month check up and because iv been well ish now and no antboits when I went last week she told me I'm now discharged of hosp but gave me numbers to ring if I'm I'll .my gp not very up on this condition and I feel very scared that I'm now on my own haveing only just got used to haveing this . As anyone on hear been discharge and left to get on with it .I'm am so pleased that I found this site last year it as help me so much to understand this illness .

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11 Replies

  • Posted

    Yes I was discharged some years ago......as soon as my bx was under control. My GP is very good & listens to me. She has always gone along with any suggestions I have made & will refer me again if it becomes necessary. Hope your GP is as helpful. You have been given a number to ring if needed so use it if/when necessary. Also you have this site for ongoing support. Try not to worry. 😊
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    • Posted

      Thanks for replying. Yes I will try it will just take time to get used to it just thought I would be with them for rest of my life as this thing never goes away.
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  • Posted

    Hiya, Well I guess as you must of read in these discuss you need to ask alot of question,so you being in the hospital they must have taken a Cat scan or Xray you look at it with them see where and how your lungs are effected?,which lobes they are in? which side ? both or one.

    How much Mucus are you getting out ? Are you having a hard time getting it out?

    The trick to staying on top of this is getting it out everyday,I do Neblizer, Sodium Chloride 3 ml, once in the morning then before bed, then Albuterol 0.890%  3 times a day also Alternative Meds.

    So ask but don't be scared you will brn fine just lean what works for you and i must say this site will help.

    Regards,

    Charlie

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    • Posted

      Hi thanks yes I use the flutter twice a day take cabocistine 6 a day and spiriva and ventolin. Iv had all scans when I was took in hospital with phnom er and told me then I had bronchiectasis in right middle lobe. Iv had this one a year and hafe this last 4 months is the longest iv been free of antibiotics. It just seen scary to be discharge now I'm 64 and live alone. But I will get used to it . Iv got type 2 diebecit to had it 15 years but I still have to go ones a year for check ups there thought this would be same as I feel it's worse than being diebecit I can control that but don't feel I will be able to this unless I stay in never go near anyone omg that's sound bad I'm just panicking but I will be fine once it sinks in 😷☺
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  • Posted

    JoJo I understand just how you are feeling, I have been there. Can you ask your GP if you can be linked in with a community matron? Not sure if you have them where you live? Since I was put on the list the community matron has been there for me when needed. She is my first port of call if I am in trouble. I haven't needed  help often but to know I can call and she will come is invaluable. Lately she is away on secondment and the district nurses have covered. Soplease at least ask the GP and explain how vulnerable you feel, often we just need reassurance especially when this is all new to us. Meanwhile keep in touch here, take care
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    • Posted

      They have gave me a number to ring if I need to its the lung nurse so I should not be so worry I know just thought I would have to go for check ups on a yearly basic but I think it's a lot to do with all the nhs cuts that are happening hear now . But I'm always looking on this site to see how everyone is doing and this place as helped me so much to understand this illness so ty to everyone and wish everyone to stay well .
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  • Posted

    Hi Jojo,

    Congrats on being out of the hospital and off the meds. 

    I know it must seem very scary and it will probably take you a while to accept and get used to having BRX. I've had it for four years and I'm still learning.

    My best advice would be to relax and not worry too much about it. All you really have to do is find a way to clear your lungs daily, stay healty and avitve and keep away from sick people. It might sound like a lot, but once you get a system in place, it becomes a daily routing like brushing your teeth and you will feel much better about it.

    Hang in there and ask any questions you might have. This site is great and the people here are so helpful.

    Best,

    Ida

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  • Posted

    I agree that you should have a scan (at least an X-Ray) and check-up every year at least in the early years of your bx. Pretty sure the NHS (assuming you are Brit from your ref to GPs etc) will give you a free X-Ray and radiologists follow up - they certainly offered free X-Rays no questions asked in Leeds area to anyone who reported they had a cough lasting longer than 4 weeks when I went 3 years ago for an X-Ray that led me down the path to bx diagnosis. I would just call that number after a year and ask to have a scan and radiologist's review of any changes, even if you are feeling OK at the time. GPs will give anyone a general health review every year from memory if asked.

     

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    • Posted

      Yes I will do that. And thanks for your reply, I think I'm just panicking I think as I was only just getting used to haveing this bx never heard of it before. Hope you are well .
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  • Posted

    Hello there.  I'm newly diagnosed and it took a while to get my head around bx and learn how to deal with the condition.  You will find this forum very helpful.  Don't hesitate to ring the numbers given to you if you need to speak with someone.  I rang the Lung Society and a nurse specialising in bx came back to me, answered the questions I had and was very supportive. Take care of yourself and try not to worry.

    Madeleine 

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