Living with a Lung Condition
Hello, I am new to this community. I was diagnosed with Legionaires Disease two years ago and I have recently been told that I now have Bronchiectasis.
I am finding it quite difficult to adjust to this news and understand what this means for me generally and long term. It's been really positive to read the Lung Foundation's advice. If anyone has any advice on managing this health condition and living with it, it would be great to hear from you.
The BFL information is the best. Any questions call their helpline. If there's a Breathe Easy group near you it's worth joining. Find out from BLF.
Thank you for your message, that's good to hear and will look for a group. I am already so impressed with the help/support from BLF, i will call the hotline next week, thanks.
Hi and welcome to the site, it's always nice to meet new people, have a good night and take care of yourself 😊Bernadette xx
Thank you, nice to 'meet' you too!
Hello and welcome 😊
A very warm welcome to you Bluestone. There are quite a few of us on here who have had bronchiectasis since baby/childhood and with a good consultant and their team and self management you will be ok.
I would say re internet, stick to reputable sites eg: BLF and Bronchiectasis R Us and European Respiratory Society.
Check out online a respiratory consultant with a special interest in cf/non cf bronchiectasis and ask you GP to refer you to them.
Let us know if you have any specific questions - there are lots of folks with BE on here only to willing to support you.
Cx
Hello Bluestone36 . 👋
I see you have had many helpful answers, so I just wanted to say hello and welcome. xx 🙋
Welcome! Dont panic, dont believe all you read on the internet, dont despair! I'm 12 years down the line from a diagnosis of bronchiectasis . Find lots info here and Bronchiectasis r us site.
Eat, sleep and drink well. Avoid worrying, wont change a thing,avoid under 5s if you can. Take care.
Hi looks like you are getting the advice etc that you need, What I would say is be proactive both in exercise and ensuring that you start treatment as soon as you feel that there is a problem. Its a blow to us all when we are diagnosed with any such chronic illness. I thought the worst when I went for a scan. I am now 2 weeks clear of infection and off antibiotics since March/April. Feeling better upwards and onwards.
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Hello, When you were told you had bronchiectasis weren't you given any information about your condition? How did they find out, did you have a scan and other tests? There are a lot of different factors that are linked with this disease. As you are so new to it I would go on line and tap in bronchiectasis and there will be lots of relevant information there. When you have a grasp of the condition feel free to ask us here any questions and we will try to answer them.
Out of interest are you going to see a consultant about this? If not, ask why. You should be given a plan as to how they plan to manage the disease. Dont worry, many of us have been living with it for many, many years. Let us know how you get on as we are all here for each other. Good luck.
Hello, my doctors sent me for a CT scan a few months ago and gave me the news that they can see Bronchiectasis on my lungs, so they are sending me back to a respiratory specialist now hopefully in the next few months. After having Legionaires disease two years ago, i was discharged from the respiratory team even though i had continued chest pain, breathlessness and general coughs and fatigue. It's felt like a long road (although i know others go through far longer/worse).
I have done some online research, so thank you for your advice. I will certainly come back with more questions when i know more. I am also in my thirties, so have been told i am 'young' to have this, but from reading online i don't know if its so unusual.
I will certainly take you advice when i see the consultant. Thank you, that is good to know. I will keep in touch, thanks.