Bronchiectasis

I have it along with brittle asthma.

I take prophylatic antibiotics, have been on them for years. (prescribed by the Cystic Fibrosis specialist) I am also on inhalers, specifically for this condition.
At the moment I am waiting to see the cystic fibrosis consultant again (I am a carrier) as my condition has got progressively worse since the pandemic and my cardiologist is concerned.
I have had to fight for this referral, because my GP is just not interested.

My biggest worry is pulmory fibrosis, as I have R.A and that can be a problem for people with these lung conditions.

I am quite unwell at the moment with it, although I until the last year I have been able to manage it with medication. To be honest, I am absolutely miserable.
The constant coughing is so debilitating and embarrassing.

I have exercises from a respiratory physio to try and clear my lungs, but they are no longer helping.

You have my utmost sympathy.

DH has this so I can sympathise with you both. He finds his specific exercises give by a clinic he attended quite helpful in so far as if he doesn’t do them he feels the difference. The problem is that now he is ageing they take most of the morning and leave him quite tired. He does them five days out of seven.

Mary doll. Thankyou for replying. I also have Asthma and Angina , both controlled with meds and inhalers but nothing seems to be helping , I did go to a respiratory physio, but quite honestly it wasn’t helping so I cancelled any appointments , ido the breathing excercises at home but it doesn’t really help ,
I think I just have to live with this and just get on with it ,
I hope you feel better today x

Lilypops

Mary doll. Thankyou for replying. I also have Asthma and Angina , both controlled with meds and inhalers but nothing seems to be helping , I did go to a respiratory physio, but quite honestly it wasn’t helping so I cancelled any appointments , ido the breathing excercises at home but it doesn’t really help ,
I think I just have to live with this and just get on with it ,
I hope you feel better today x

I have microvascular angina too!

I think you should go back to your GP (I know it's difficult to see someone), I just kept on nagging, until he listened.

There are new drugs out (which I hope may help and be suitable), which is why I have been persisting.

Just because we are old and ill, doesn't mean we should be left to suffer.

I hope you get some relief. 💐

DH’s are much more than breathing exercises. They involve the use of weights to clear the chest and leg kicks and walk presses etc but perhaps with angina they would not be suitable for you. You do need a referral from a GP to see a consultant even if you have already seen one . You need regular check ups so keep on asking. There is help available.

Like you DH did not find the respiratory physio helpful. He was referred to a course specifically for COPD etc rehabilitation and he has just been invited again after several years. Keep on trying to find out what is available in your area.

Thankyou Marydoll and Greenfinch for your helpful and encouraging message. I will ring GP and start insisting on other help , I just order my repeat scripts without bothering the Dr, I will ask about other ways of managing this condition.

I was diagnosed about fourteen years ago following treatement for breast cancer.

I developed Bx after being asthmatic all my life but also having a condition called ABPA, which is basically an allergy to the aspergillus mould which causes damage to the lungs, this was diagnosed when I was in my early thirties. I was told I would be on oral steroids all my life.

I had various treatments over the years which caused far more problems than the breast cancer ever did,

However, now I am better than I have ever been. I came off steroids six years ago and will never go back on them, except for short doses.

My Bx causes me few problems other than a persistent cough. I was taught how to do the breathing exercises to get the crud off my lungs but now only do these now and again instead of everyday.

I do have a normal asthma inhaler, and Montelukast I take at night. Apart from taking Vit D in the winter months I am on no other medications. I haven't had anti-biotics for well over a year and haven't seen my GP for getting on for a year, and that was not chest related. I am no longer under consultant care.

I don't take fancy supplements but I do take care of my general health, eat a reasonably healthy diet, take moderate exercise and nom limit my alchohol intake.

Of course, I may be lucky but I have worked hard all my life, never claimed benefits and have travelled abroad. Basically Bx has not limited my life in any way. Maybe I've been lucky, I don't know.

I could offer you a few more top tips if you like regarding ventilation around the home etc, feel free to PM me.

Most of all don't worry. You can learn with time what suits and what doesn't but the best advice is to carry on living your life, with a few modifications this is more than possible.

I recently went on an exercise course to help with my asthma. To be honest my osteoarthritis hindered it a fair bit but I tried my best. It was good to go as it reassures you that you are not on your own with (COPD the umbrella lung conditions come under). People attending the course had various lung conditions including yours.
Have a word with your consultant to see if it’s possible for you to attend the 8 week course. Mine is held at the local health and sport centre and run by the local council on behalf of the health service.
I have a morning inhaler Relvar I also take an effervescent tablet to help clear my lungs called Acetylcysteine. This is brilliant I wouldn’t be without it alongside side my Ventolin inhaler my condition is managed. A lady I befriended on the course has your condition one of her medications is the effervescent tablet too.

Redhead. KQ, Thankyou so much. I have learnt a few tips from you all , something to back to my GP with , armed with things to ask , I did feel awkward cancelling the respiratory physio but I really didn’t feel any benefit. Just a long wait at the hospital , I did the excercises at home.
I have never been prescribed any other meds apart from short term steroids , I will ask about other treatments and Thankyou all for your kind words.

Apparently, I have this. It was discovered last year after I had a CT scan for something else. It also revealed I have a thyroid problem which does not, at the moment, need any intervention. Neither, it seems, does the bronchiectasis as my GP has not prescribed any medication. I’m fairly sound of wind for my age, but do tend to cough in the morning.

I was diagnosed with Bronchiectasis about 15 years ago. Recently my medication was changed from Seretide (prophylactic) and Ventolin (Reliever) to Fostair NEXThaler. It’s a prophylactic and reliever in one. I am getting on well with it. Yes, the cough is embarassing and I always am anxious when I have a social event. I’ve always got a small bottle of water with me.
The productive cough is so embarassing at times, but it’s always good to bring out the yucky stuff. I don’t do any exercises, other than a short daily walk.
I avoid milk products, but not obsessed about it.
Don’t let this diagnosis worry you too much. Yes, I know my lungs are getting weaker and I can’t walk uphill much, but I have learnt to live with it. It’s not all bad Lilypops

Also take one Montelukast at night.

Crazy H. Thankyou. I have Fostair too through a volumatic. Taking a bottle of water is a good idea when I go out socially when I get a coughing attack. I find it difficult also walking uphill , yes I live with it ,

What improved my situation was being put on prophylactic antibiotics for life and a complete change of inhalers, of which I have three. (including Relvar.) Episodes of chest infections decreased dramatically.

Like all illnesses, some people can have it mildly, some more seriously. It isn't a one size fits all for everyone, when it comes to medications.
When Montelukast first came on the market, I trialled it, but it made me very unwell. I cannot tolerate any of the asthma drugs, such as Aminophyllin, Slo-phyllin and Uniphyllin, as I found to my cost in hospital.

Unfortunately I have come to a point, where I need some intervention.

Lilypops, don't just accept it, I'm not! .

Marydoll. I have an appointment this Thursday with Gp to get some more help. It’s so kind of everyone to offer advice and I really appreciate every message

Lilypops 🤞

Lilypops
I am a retired respiratory specialist nurse. I really think that you should reconsider the opportunity of respiratory physio.

When you are speaking to your GP, ask for a referral to a Respiratory physician/specialist at your local hospital.

Bronchiectasis is not curable, it is a chronic condition, and you need help and expert advice on how to manage it, and reduce the risk of any infections that will take quite a while to get over.
Take advantage of any flu/covid/pneumonia jabs. Eat a varied diet, and try to keep as fit as you can.
Respiratory physio is a very important help for you, and they will show you how to effectively clear your lungs, and will enable you to stay as well as possible for as long as possible.
Good luck.

I have had asthma for years and then was diagnosed with bronchiectasis earlier this year. I have a Relvar inhaler for the asthma, which is excellent, and for the bronchiectasis I take Carbocisteine hard capsules in varying amounts depending on when I feel I need them. They are good at loosening the lung gunge.

Two other things help: singing, which I do to my guitar and laughing, which I make sure I do by watching reruns of my favourite comedy series. I also have one son who is very funny and we often have a good laugh. Unconventional maybe but both make a difference to my lung function. I never took to the lung exercises I was given. My condition is not very serious but I am aware that it could get worse as I age and keep an eye on things when I get a cold. I'm not under the doctor or a specialist any more.

Charley 68. Hi, I have got an appointment with my GP this Thursday for this and I am going to ask for a re referral for the physio. When I cancelled my appmnt with the physio I was feeling very down and not too well , I thought oh what’s the point it doesn’t help but on your advice and others I hope to see him again.
It’s a depressing thought that it’s not curable and I really hope it doesn’t worsen with age. I am 76 now and I hope to stay well for a long time ,

Hi Mizuna. I have asthma and angina, I use a Fostair inhaler twice daily and a salbutamol as and when. I don’t know if they are helping really. I still wheeze every morning.
I find when I have a good laugh. I start coughing !! Can’t win
Do you have side effects at all with carbocysteine capsules. ?
I may ask my GP if she would recommend them. Thankyou everyone for your kind messages. It’s been very reassuring that I am not the “only one “ with this health problem. I have gained a lot by posting on gransnet.

Hi Lilypops, the only side effect with Carbocisteine is a slight runny tummy if I take six a day as I have been this week because I have a heavy cold and found that my breathing had gone tight. Usually I take one capsule morning and evening and have no side effects. I also have a steroid nasal spray which I only use if I get a cold. Sometimes I'm not sure whether I'm treating my asthma or the bronchiectasis!

Incidentally, the Carbocisteine and nasal spray originated from a hospital stay earlier this year when I was admitted with a chest infection and that's when the bronchiectasis was discovered. I have just a tiny pocket of it in one lung, apparently.

I had a Flutiform inhaler prior to being changed to the Relvar Ellipta and used to wheeze every morning. I don't now.

How treatments differs with different Gransnetters. Some of you are fortunate in that it was discovered early and are receiving treatment, a lot of damage is done, when diagnosis is late.

Mine was diagnosed about fifteen years ago and is quite severe, yet trying to get support is really difficult,
My former rheumatologist was brilliant at keeping tabs on it, There can be serious complcations if you have R.A, but a new consultant, sheilding and a useless GP have taken it's toll.

Good luck for Thursday, Lilypopos.

I had coughing and wheezing at night, that was waking me up. Doctor thought I had Asthma. After many tests it turned out to be an allergy to house dust mite. I now hoover the bed, and wash my bedding twice a week. All my symptoms have gone. without medication. I was on steroid inhalers for 35 years for Asthma, that was in fact allergies.