Bronchiectasis

[Pink2000]

I’m very new to this and only just found out, I’m struggling to come to terms with it, just feel like crying. Any advice on how to come to terms with it as I feel a mixture of emotions.

[Hidden]

Maybe you would benefit by chatting to one of the nurses on the BLF helpline on 03000 030 555. available Monday to Friday, 9am - 5pm. Otherwise, the following link will give you excellent advice. blf.org.uk/support-for-you/...

You can also download the following booklet. shop.blf.org.uk/collections...

Above all else, try not to worry. There are lots of members on here with Bronch, I'm sure others will be along to help you. Look for posts by little pom, who has had this disease all her life and there is nothing she doesn't know about it. XXX

[Burs]

Hi pink 2000. I dont suffer from the same disease as you, but i found this site and its made such a difference, knowing that however you feel someone will have advice or just a 'hug' and a kind word for you when you feel a bit lost. So post and then post some more !! Xxx love and a big hug burs xxx

[Bkin]

Hi Pink,

I was diagnosed about 2 years ago with bronchiectasis in addition to having COPD for over 12 years. It depends how much bronchiectasis is affecting your life, for me I am generally managing ok until I get a lung infection then its just awful so its a good thing to avoid folk with colds because for us these can lead to lung infections.

I only have carbocistein to help with keeping the mucus thin, and it really is helpful, always drink plenty of water to help with that too.

I agree, have a chat with the nurses on the helpline and check out the information about Bronchiectasis on the BLF website, I think understanding the illness and managing it are key to any lung condition really.

Have you been referred for pulmonary rehabilitations course, that may help, you can learn about protecting yourself from lung infections and what to do if you get one, if your mucus is a nasty colour it good to get it tested, your doctor can provide sterile sputum sample pots, once tested the appropriate antibiotic can be prescribed.

I was upset when first told I have bronchiectasis on top of everything else but generally I just carry on and do as much as I can and rest when I need to. Its important to do some regular exercise, not good to let anything lie on your chest that is for sure, there is a breathing technique using huffing called 'active cycle of breathing' Your doctor can refer you to hospital respiratory physio to have instruction on this and she will provide information on managing your lung illness too, your doctor can also refer you to Pulmonary rehabilitation.

(If you are still under the consultant the consultant can refer you too.)

I think understand the illness and how best to manage it will help help you loads.

On the PR course you also get info on stress and anxiety management and if you are lucky you get a freebie CD too Breathing techniques generally are very helpful when feeling stressed or anxious.

Take good care Bkin

[Shancock]

I believe its very much about clearing your mucus witha breathing cycle daily and you need a respiratory physio, you also need a specialist with knowledge of this condition. Always have a rescue pack of 2 weeks supply of abs available should you need it

[Ortho10]

I have mild Bronchiectasis, and the key to keeping well is to recognise when your symptoms are worsening.

Arrange with your Gp to put a two week course of an Antibiotic rescue pack on your repeat prescription, and hand in a Sputem sample before taking them.

Your Hospital Consultant must have talked to you about mucus clearance being important.

I work full time, have two young children, and have active hobbies, please try and stay positive.

Phil

[cofdrop-UK]

A very warm welcome to you Pink, athough I am very sorry to hear of your diagnosis, but better to know what you are dealing with. It must be a shock when you are first diagnosed. I don’t know what that feels like re bronchiectasis as I have had it from being a 5 month old baby in 1948, so that shows you, when there was very little by way of treatment except penicillin and physio physio and more physio, I and some others on here survived.

I assume you have had a ct scan to have been diagnosed. I hope this also means you have a respiratory consultant with a special interest in cf/bronciectasis (makes a difference believe me from experience). Your consultant should refer you to a respiratory physiotherapist who will go through different methods of lung clearance and PEP gadgets to see what suits you best. They may refer you to an immunologist if the cause is unknown and refer you for a sweat test to illiminate cf. All this sounds daunting but it really isn’t. I would say that lung clearance, which you must try to do regularly is the most important thing you can do for yourself.

Try not to get too upset or anxious, easier said than done. You don’t state roughly your age or severity. Well managed you can still live a long and happy life.

There is an excellent site which I was involved in as one of the patient advisors, (not that I am biased in any way😉). I would advise you just pop in and out of it, as it caters for people who have just been diagnosed to more indepth interviews consultant to consultant, which at this stage will probably not mean much to you but you might find helpful later.

europeanlunginfo.org/bronch...

Love cx

[Pink2000]

Thank you all very much for your kind words, I wil take all advice and speak to someone and find out more to help myself see with it. I work in a nursery full time Which isn’t great considering I’m at a higher risk of catching infections... however I will try to stay positive.

[Hidden]

When I was first diagnosed, I worked in a special needs school. Children with CP, Downs etc. All conditions which meant they were prone to chest infections, snotty colds and other nasties. I was in and out of hospital like a yoyo. Now I'm retired I don't have those problems. Make sure you have a flu jab every autumn/winter, and a pneumovac jab too, XXX

[Pink2000 in reply to Hidden]

Did you have to reduce your hours or anything? I work full time however I’m currently doing half days as I’m so exhausted not sure how long I can do that for though! I shall be getting all jabs when I’ve recovered from this chest infection.

[Hidden]

I only worked for the lunch time period. I was a dinner lady officially, but the job involved personal care (bathroom duties) and entertaining the children during dinner time. Most of them wold choke while eating, and cough into my face. I got the job before diagnosis. But my DIL who also has bronch, works full time, and it's heavy work.

Just want to thank cofdrop for the link. Any new resource is a good thing. XXX

[cofdrop-UK in reply to Hidden]

You’re very welcome 🙂

Cx

[Gamum]

Hi I was diagnosed about 6 months ago after a year of being told it’s just a chest infection by my gp. Anyhow , it was initially a bit scary, however I have turned that on it’s head. I nebulise am and pm , take my pills and my inhalers and I feel so much better. So I had a choice (feel sorry for myself or do what I can to keep well) . I have just completed my first Park Run after doing the couch to 5k. Never run in my life before, I now run twice a week, it’s not pretty but I feel great mentally and physically. I have 2 young kids and work full time and I intend to keep doing so. Mental attitude is so important, get outside walk run do whatever you can to turn your diagnoses on it’s head. X

[Frnikula]

Unfortunately you will need some time. When you mentally accept your condition, learn how to control and manage it, you will be fine again or even better.

[Why19]

Me too, it's been 2wks and at very bad time, but I'm better emotionally today than I have been.

Positive thoughts coming your way