Hi
Looking for advice.
The last year my lungs have become worse.
I have been struggling with repeated infections. Month after month.
I have asthma and bronchiectusis uts now very difficult to remove my mucus. My dr mentioned a bronchoscopy.
Anyone had this and did it help to give more detail on the situation in the lungs?
Hi Carkaisabellacolin , 😁
A bronchoscopy will allow the doctors to look into your airways and lungs. They can also take mucus and tissue to test in order to help them find out why you keep getting infections. I doubt they'd do it if they didn't think they could learn more about what going on. I really hope they can help you feel better very soon.
Take good care,
Cas xx 🙋🐕
Please can you say what treatments you are on? What have you tried in the past? How well controlled is your asthma? Is your doctor a bronchiectasis specialist? Have you had immunity tests? It sounds as if your recurrent infections are being triggered by poor lung clearance. There is lots of information about that - you can find it via the search box.
Hello there. I am a very longstanding bronchiectasis person. (66 years).The symptoms that you describe are very indicative of bad mucus clearance which leads to bacteria breeding in the fluid in the damaged parts of your lungs. What you need is the right antibiotic for the bug which is in there for at least 14 days and a major effort to clear the mucus out and to keep it clear on a daily basis. There are tecniques to do this, flutter devices to help loosen the mucus and drugs such as nebulised saline and carbocysteine to thin it down to make it easier to expel. If you are lucky you may be able to get a physiotherapist to work on your chest to get it out.
A bronchoscopy is very invasive and with most bronchs totally useless as it is not needed to find the bacteria or to clear the lungs. This is a process which the patient needs to get under their own control. Unfortunately most doctors suggesting bronchoscopy for your problem do not know much about bronchiectasis and are clutching at straws in the dark. You really do need to be under the care of a bronchiectasis specialist because GPs and most general respiratory consultants are not trained in it and have very little experience of the condition compared to a bronch specialist.
Do check that if you have seen a consultant they are a bronch specialist. If not, find the name of one in your area. They are usually at large teaching hospitals. Take the name to your GP and insist on a referral. The specialist should help you to learn how to get control of your condition with the help of their physio and also instruct your GP which antibiotic to give you to keep at home (14 days) to take as soon as anything changes. There are also other treatments such as nebulised or IV antibiotics which they can give you if and when needed.
This is a condition which is 90% self management and 10% medical and drug help. Good luck.
You say it all perfectly. Just my experience. I would add how much aerobic types of exercise have helped if possible, the Brompton physio encouraged me to get out of breath, also saline inhaler. But, it took the right antibiotic to clear things after a string of infections, then you start daily management.
Thank you it helps alot my health us cimplicated. As i have the two lung conditions as well as managing my recurrent pulmonary embolisms. So i am on anticoagulants injections. Which my consultant has told me makes my bronchectasis worse. Had all of this for years😞
Be coming more tiring now.
As it has stopped me running .
Need to try a few things you have suggested the saline . I no a few people suggested salt inhalation 😁😎
I would concur with what Missyscarlet says about a bronchoscopy. MY OH also has asthma and bronchiectasis. Some years ago a bronchoscopy was attempted. IIRC the procedure was halted because his airways were simply too inflammed and 'twitchy'. I am not saying that this would happen to you but please be quite sure about what they hope to achieve by doing this and if it will have any benefit long term. Ask them if there is any risk of infection being introduced because that could be quite problematic.
I have asthma and bronchiectasis but also a breathing disorder. My resp physio recently suggested having a look inside as the sounds in my throat are insane. They think something is going on in there. But gp’s are also wanting a full bronchoscopy. I suspect that if they tried they wouldn’t get past the throat either. It didn’t even occur to me that there’s the possibility of introducing yet another infection!
I see my resp physio person tomorrow so I’ll speak about all this then. Can’t get the mucus up on my own either despite many attempts.
Agree with the above sound advice from Bella and Missyscarlet (including scepticism over the need for a broncoscopy). Discuss with a bronchiectasis specialist whether you should be given prophylactic antibiotics to head off some of those infections. Many of us who have the bronchiectasis condition benefit greatly from azithromycin. You may also warrant a long acting bronchodilator particularly if you have 'noisy lungs' with all that mucus. You should also be exploring with a specialist whether you can take (or ramp up) some daily exercise.
A bronchiectasis specialist would be ordering a full range of blood tests - important among those tests would be to suss out how your immune system is, as Bella mentions. Also your specialist would consider the need for pneumonia protection (Pneumovax injection) and remind you of the need for an annual flu injection
On the subject of long acting bronchodilators I agree with you. Last year I asked for one for my OH to try and stop the 3am dips when he was waking up with a tight chest and needing the nebulizer. The respiratory specialist nurse prescribed Onbrez 150mcg and it’s been very good. He has it in the early evening and it lasts for 24 hours. The literature says it’s not to be used for asthma so I queried it with the pharmacist and he said it would be ok - the warning is for those with just asthma and no other pathology.
I have been put on an antibiotic low dosage and have my inhalers. We tried pbysio but stopped as my lungs reacted badly very painful and physio heard strange cracking noise. Due to the blood condition the physio had to stop as well.
I have tried a run today. Did it but after felt awful. I will continue as i know exercise really helps
Thank you 😊😊
You have complex health problems by the sound of it. My OH has asthma/bronchiectasis and his lungs are always noisy. When there is active infection it sounds as if he has a traction engine in there. When he is reasonably ok it is less noisy but there is always wheezing with some other noises. I only mention this because it hasn’t stopped the clearance regime. In fact it has made it more important if he’s having an exacerbation. He is on anticoagulants too but it is Apixaban, given for atrial fibrillation and mitral valve disease.
Congestion of the lungs encourages infection which then triggers the asthma. I don’t know for sure but I wonder if the asthmatic bronchospasm makes it harder to get the mucous up. Anyway, if you can get something to thin the mucous it might help. Carbocysteine is helpful for some people. If you have a nebulizer, you could ask your GP to prescribe normal saline nebules. Nebulizers are not that expensive and are a real boon to people such as you. OH has his Ventolin and Atrovent three to four times a day to keep the airways open and to facilitate clearance. He also uses hypertonic saline 7% and it works very well but this can only initially be prescribed by hospital doctors because a test dose has to be given within the hospital. After that it can be prescribed on FP10. Have you tried a clearance devices? They can be very useful.
On the subject of antibiotics have you taken a good sputum specimen into surgery to have it tested? This is really important for people with bronchiectasis because there are certain infections to which bronchiectasis patients are prone. These need targeted treatment with specific antibiotics because broad spectrum ones are ineffective.
You do have a lot of complicated and interreactive conditions to deal with. I was put on anticoagulants for AF but came off them due to bleeds from my lungs. Luckily my heart man concurred with this as I am very underweight but I don't thinl it is an option when you have a blood clot problem. It is a case of balancing everything and managing those medics as well! We are here to support you.x
Thank you
It helps hearing from others like me as living with these conditions has not been easy but as the lungs feel weaker i just wanted some support and not to feel like i was moaning😕😣
Moan away if you need to. We can say things to our friends on here that our other friends,family and work colleagues simply don't understand and can't be bothered with. Now that you have found us you will soon be supporting some of us on our difficult days. There is a lovely experienced member who has just supported me through a nasty exacerbation. That's what we are all about x
You are not moaning. You are trying to navigate your way through to having a better quality of life. I sympathise because I know from being a carer how difficult life can be with such complex problems. What I have found out is the same as other posters ie that referral to a specialist can pay dividends. These conditions need to be monitored closely and treatment fine tuned. It is hard work but worth it if you can achieve better control.
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