I've recently been diagnosed with mild bronchiastitis. I'm on lots of meds due to severe asthma so I'm not seeing my consultant until September as i should be ok. I had an asthma review today with my very helpful asthma nurse who told me a bit about bronchiastitis. I assumed i would discuss it with my consultant in sept, so was pleased she talked about it. She said although its only mild i have to be very careful now not to get infections or colds or anything. If i get a niggle i have to go to the gp to get checked and get antibiotics. She sent me away witn sputum pots to monitor it. She basically said it can go from mild, to moderate, to severe, to life threatening to death. And it can happen quick if its not managed. Scared the poop out of me! I know there is a fair few sufferers on here. Is it really that much to worry about? Sorry for the long post. Thanks for reading.
Bronchiastitis: I've recently been... - Lung Conditions C...
Bronchiastitis
Hi
Sorry that she scared you that’s the last thing you want. However you do need to be careful. If an infection does occur it’s two weeks antibiotics and steroid if bad. Ensure you always have rescue packs in.
There is also devices like a flutter device that you can use to help clear the mucus. Physio on a daily basis is also helpful.
Take care x
I take Antihistemine "one a day" permanently,it may help you . Also try to keep away from people with coughs and colds, including children unfortunately. Put youself first.
Hi Grayjay, Just wondering why you woud be taking an antihistemine for bronchiectasis.
Cx
Hi if like me you may have rhinitis all year round, the post nasal drip doesent help with lung conditions and can lead to infections. That what those looking after me said.
Wonder have you tried Neil Med sinus rinse. Amazing the amount of gunk it gets rid of.
Cx
Started a while ago and think it’s helping- but as a wimp it took a while to get used to it 
🙂. Steam inhalation is also helpful. I have a plastic insulated flask with a mask on the top from Betterware. Not sure if they still sell them but they make it much easier and safer to use and it doesn’t soak your hair like sticking your head over a bowl with a towel, like my Mum used to do when I was little!
Cx
I have emphysema which has some similar symptoms. Normally I took them to protect me from insect bites. When I stopped taking them at the end of last Summer my symptoms worsened. I.e coughing up blood, and regular coughing fits. I told the respiratory nurse and she told me to take them regularly. I do take them on a daily basis and have improved again. So it's a no brainer for me. I'm only suggesting that you try them, they're not expensive and no side effects that I'm aware of. I get mine from Superdrug in 30s with Loratadine.
Kind regards.
Hello Treed12 and welcome.
These poor nurses. They never get it right. Most cannot even say bronchiectasis and like most GPs have no idea how to manage it. Some at least try to learn a bit but rather than finding out about its daily management properly, proceed to scare patients to death. I won’t bother with what she said, rather with what you need to do to lead an ongoing full life.
There are several of us on here who have had extensive bronch since we were tiny children. In some cases nearly seventy years and have had busy lives,children, travelled and are still giving it plenty.
You need to find out as much as you can about it. I am hopeless at posting links but there is a very experienced bronch on here who hopefully will see this and post the best link.
The most important thing you need to do is to empty your lungs every day of any mucus that is lurking in there. This is where the bacteria love to party and this results in an exacerbation and the need for antibiotics. Being mild, this is also the best way that you can stop progression. In keeping down infection you prevent further lung damage. There are breathing tecniques to help you do this.
Obviously lots of exercise to your own level and a good diet are the way to go.
The one thing that the nurse was right about was the need to avoid virus spreaders. Exacerbations do seem to come off the back of a virus. There are lots of preparations out there for preventing these. It is just an ongoing battle.
Your GP should give you 14 days of the antibiotic which the specialist suggests to keep at home. Not 7 days, that is a copd treatment and national guidelines say 14 days for bronch.You take these as soon as things change.
Your main relationship should be with your consultant and their secretary. Hopefully you have a GP who will cooperate with them. Many GPs are grateful for the instructions of the con because as I said, they know very little about it.
I hope that your consultant is a bronch specialist and not just a general respiratory consultant because they are not trained or experienced in it. Do check and if they are not, find the name of a bronch specialist and insist on a change to them. A member on here recently did this at my suggestion. They saw the bronch specialist recently and were amazed and very pleased at the difference between that specialist and previous treatment.
Well I have given you too much to chew on. Good luck, we are here for you.
In my opinion it is crucial that you receive brutal and honest truth on the beginning when bronh are diagnosed. I can imagine how you feel right now but believe me, you should be very thankful to your asthma nurse.
You need to accept the desease. It is hard but after some time it will be ok and you will be positive again. Remember, if you will manage the desease from the beginning you will not have much impact and you can live completely normal life. If you will ignore it, desease will progress. Remember, every lung infection is bad for you and cause additional damage.
You need to understand the desease and need to be proactive with DAILY respiratory excersises and your physical condition. If you will be proactive you will reduce or eliminate lung infections. When infected you immediately need antibiotics.
So remember, daily proactive management and antibiotics when there is an lung infection are key to managing your desease.
I would recommend reading this link as a starting point:
Print and study it.
Fyi - i did not accept bronh on the beginning. Pulmology specialist said i just need to be carefull and everything will be ok. Great! So i did not worry and forget about it and 1 year later after 4 sequential infections i was forced to accept the desease. I needed half year to recover and to feel normal again. I changed pulmology specialist and now i know how to manage bronh. I am disappointed and mad on initial pulmology specalist because he did not provide me brutal facts and inform me on the beginning with detailed guidliness how to manage the desease.
Dont do the same mistake as me and you will be fine, you will see. And dont forget to say thanks to you asthma nurse :).
Have a nice day!
Sorry. Bronchiectasis is not a brutal fact. It is a condition which one lives with. I have had it for 67 years- all of my life and if I had taken that attitude I would have had no life.
I’m sorry that you had the misfortune of an ignorant pulmonologist when you were diagnosed and it is good that you now have positive treatment and are managing it well.
We are not invalids, we are not in danger of imminent death and it is not helpful to talk to those newly diagnosed as if we are.
It would be a good idea if you used your growing knowledge of your condition to help others handle it rather than frightening them and making them feel that their situation is terrible.
I am sorry to be harsh but there are a lot of worried people out there who are subject enough to the ignorance of the medical profession about bronchiectasis and need comfort and encouragement from the likes of you and I.
PA. Thanks for putting the link. That should be very helpful to Treed12
Let's play nice....I think everyone is different. I've had it about 15 years and was scared to start with but try to live mindfully and do my best to stay fit . Chest Heart and Stroke have a good booklet on bronchiectasis. I avoided the internet. I got the impression that once I had pseudomonas I would die! Not true. I got rid of it.
It is true for me that I dont let infections get too much of a hold. Just get the sputum sample in, have antibiotics at home to start and then hopefully your GP will tell you if they are not the right ones. That's what my practice does.
I play table tennis and badminton three times a week, my lungs are heavily scarred but I push on. I eat a healthy diet keeping my BMI in normal range and take supplements/vitamins. Since I stopped work and started this regime my health has dramatically changed. Finally, if you worry and stress it will affect your immunity and it wont add a minute to your life.....good luck.
As Missyscarlet says there are some of us who have lived with bronchiectasis for many years. I was diagnosed at 5 months old following double pneumonia and whooping cough in 1948. So we are tough, but it is all down to good management. You should be referred by your consutant and be taught to do your own lung clearance every day.
Here is a link to the most up to date information re bronchiectasis (it is also updated constantly). It took a long time to put together, as these things do by the European Respiratory Society. The group consisted of European respiratory consutants and patient representatives, of which I was happy to be one. The members both here on British Lung Foundation and Bronchiectasis R Us contributed extensively by very kindly answering questions about living with bronchiectasis, also which information out there they had found the most helpful. The replies were very helpful and much appreciated.
As people with bronchiectasis are diverse, you will find explanations of how lungs work and bronchiectasis, both treatment you should expect and self management to interviews between clinician and clinician. So just dip in and out.
europeanlunginfo.org/bronch...
Might be an idea to contact consultants secretary to see if you can get your appointment brought forward.
Good luck
Cx
Hi Treet. It widens the airways in the lungs which can increase the sputum and flem. And makes it easyer to get lung inflamation so always wear a face mask when you are out ANTWHERE and buy a good one. I suggest take vit D 2,000 iu day. Read up on it.
Take care.
Treed12 - I suspect that your nurse was a bit pessimistic because you have severe asthma and bronchiectasis so have extra problems to deal with. She was a tad blunt but on the whole telling patients the truth can be useful.
I am a carer for someone who has the same conditions. The problem is that infection is a big trigger factor for exacerbation of asthma and of course people with bronchiectasis tend to get infections more easily. Infection causes inflammation, as does asthma so it can be a bit of a vicious circle.
This is not to say that you cannot manage it effectively. You already have a lot of skill from managing your asthma so don’t despair. Follow the advice of the other posters in your thread and you should be ok. Do try and get under the care of a consultant who specialises in bronchiectasis. He or she will have a team of support staff to help you. It’s really important to self manage and there’s lots you can do to keep yourself well.
Thank you for all of the replies. Really appreciate all of the advice. Its nice to know im not alone 😊 im going to keep positive and keep on top of it!
hi Treed12
I have never heard of bronchiastitis... Do you mean bronchiectasis? Which is a problem of the bronchial tubes in the lungs that become varicose - i.e. flaccid and lose their ability to remove phlegm from the lungs which can then create a breeding ground for bacteria to flourish and make breathing difficult and reduce physical ability/stamina. There is a much more detailed description of this on BLF's website.
Wishing you well
swimmer
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