Hello I'm new to this!

[Montym00]

Hello, I have Bronchiectasis and was diagnosed in 2009, I don't know anyone else with the condition and it would be good to join a support network.

[Hidden]

Hi nice to meet you. I suffer from copd but there are a number of great folk on here who do have Bronchiectasis and I am sure they will be along very soon. x

[Montym00 in reply to Hidden]

Thank you for replying x

[Hidden]

Hi Montym. Welcome to the forum. I have bronchiectasis too, diagnosed 1994, but had lung problems since infancy. Many of our members have copd, but there's a sprinkling of bronchs too, and other lung conditions of course.

[Montym00 in reply to Hidden]

Hi thank you for replying. I am off work at the moment due to another flare up and it hasn't settled down since March. Chow do you find your GP service? I am often misprescribed and seem to have to explain the condition and my history every time I have a flare up

[Hidden in reply to Montym00]

I have a great GP but am mainly managed by the consultant at hospital. Are you being treated by a consultant?

I have to go out now but will be back later. You've come to the right place, we'll help you all we can. Ask anything you like!

Meanwhile here's a very good booklet

chss.org.uk/documents/2013/...

[Montym00 in reply to Hidden]

Thank you for the link, the booklet was very interesting. I am seeing the consultant that diagnosed me in 2009 on Saturdayat his clinic, I haven't seen him since then as managed by GP but since March the infection is not clearing.

[stone-UK]

Hi

Welcome some light reading.

bronchiectasishelp.org.uk./...

[Hidden]

Hi montym00,

There are quite afew of us on here, bothwith lifelong and recently diagnosed bronchiectasis. I have been living with it all of my life and am now 66. We are here for you.

[Montym00 in reply to Hidden]

Thank you, I have felt very alone with it and friends and family have never heard of condition!

[Watfordgirl]

Hello, nice to meet you. What fun you'll have! x

[Pentreath Volunteer]

Hi Monty - another bronch (+ asthma) here. If you have not already been offered pulmonary rehab please ask for it as this will help you a lot. Most are run by respiratory physics and respiratory nurses and go on for a few weeks. There are variations but most have an hour of information giving/exchange and an hour of closely supervised exercising. Made a huge difference to me and I feel more in control now but am fortunate in having very supportive GP practice and consultant. Welcome to this friendly site and ask anything, someone will respond with helpful information.

[Montym00 in reply to Pentreath]

Hello thank you for your reply. I unfortunately do not have a good system at the moment with the GP. Every time I go with a flare up I have to explain from the beginning my history as when they listen to my chest they say it is clear. (My consultant has said it could be because the damage is low down). On occasions I have been told it's a pulled muscle or its viral which has delayed treatment and then I have ended up on steroids and antibiotics weeks later.

I am planning on speaking to the practice manager to see how I can resolve this situation in the future.

Has anyone else experienced this?

[Pentreath Volunteer in reply to Montym00]

That sounds like a good plan to speak to the practice manager. He or she should be able to let you know which GP has an interest in respiratory problems.

[Hidden]

Hello again. What I would do is tell the consultant the difficulties you've been having with GP treatment & ask him to write to the GP (copied to you) with specific instructions on how future flare-ups are to be dealt with.

As a minimum, the GP should be providing you with a rescue pack of antibiotics (so you can take them if you become ill at the weekend), and giving you sputum pots & microbiology forms so you can send a sample into the path lab before you start on the antibiotics (helpful to establish which bacteria are causing the infections.) Moreover, the antibiotic dosage/length of course should be in accordance with that used for cystic fibrosis. Take your time with the consultant, don't be rushed. Is there anyone who can accompany you, to remember what is said?

The "wait & see" approach adopted by your GP is for healthy people. Chest infections in people like us should be treated promptly & aggressively. Also, the sooner treatment is started, the less likely you are to need steroids. In bronchiectasis, crisis management is bad management, & can lead quite unnecessarily to further lung damage.

[Montym00 in reply to Hidden]

Thank you so much for your reply, it feels so good to talk to someone, my husband will come with me on Saturday and I have written down everything that has happened since 5th March to date leaving me feeling like I'm not getting anywhere

Love Sarah X

[Hidden in reply to Montym00]

Great idea, Sarah. One thing I forgot - it's crucial to keep your lungs as clear of mucus as possible, to inhibit the growth of bacteria. So you need to do regular chest physio to get the mucus up. If you haven't already, ask for referral to a specialist physiotherapist who can teach you how to do this.

Good idea to phone the helpline as suggested by annienell.

Once you've got all the information you need, & good support from your GP, you'll feel more in control, & can get back to work & get on with your life.

[annienell]

Welcome Montym00 - I'm glad you found us.

You've received very good advice already from our members. I suggest you might also find it useful to call the BLF Helpline (03000 030 555 - office hours) before speaking to your Practice Manager. Their experienced Nurses can advise you on how best to achieve the co-operation and support you need from your GP.

[Montym00 in reply to annienell]

Oh thank you, I hadn't thought about that. I can't believe I didn't think to look for this support sooner, it has been great already, thank you X

[Claudine]

You need to see a Consultant. He will recommend the necessary medication and should refer you for physio. The average GP surgery does not see enough of Bronchiectasis and they put you under the 'label' of COPD which is wrong. The important thing to remember is that you need to get rid of the mucous daily in order to reduce chest infections. If it stays there it will be become infected. Management is important. This site is a good form of info. Good luck.

[Maximonkey]

Hi Monty, nice to welcome you to our blog. All the folks on here do not have Bronch however, a large number of us do. So speak out and if we can help or have any tips for you, one of us will contact you. Take care Maximonkey

[ericwood992]

Hello Monty,

I was diagnosed with bronchiectasis three years ago. You shouldn't worry about it - just get plenty of exercise, take a healthy diet, lose weight if you need to and take the meds you were prescribed.

[PosyP]

Hello Montym00,

I’m new as well, well nearly new. I’m still finding my way around. It certainly does seem to be a very friendly forum, as well as informative. I am near Southampton, South coast of England.. I guess there are members from all over the world.

I hope you can link up with someone else who has your unusual “illness”.

Good luck.

[PosyP in reply to PosyP]

This is me replying to myself. Silly me. I get it now. This is an old thread. I said I wasn’t computer savvy. Idiot ! Ha Ha. x