Diagnosed with bronchiectasis

[Maninblack]

My husband has just been diagnosed with bronchiectasis and given a 10 page print out explaining the condition. Needless to say we are a bit overwhelmed by this. The results of the CT scan came via the consultant to his GP. He doesn’t see his consultant until early April. In the meantime, any support and advice from the community would be much appreciated.

[Hidden]

Just replying to welcome you to the group. Relatively speaking, there are a lot of members here with bronchiectasis (which you’ll sometimes see abbreviated to ncfbe), and I’m sure they’ll be along to give you a warm welcome in due course. Hopefully it’ll be reassuring for you to hear that some of them have been living with the condition most of their lives, which in some cases means for 70 years, and they’ll all be more than happy to answer any questions you and your husband have. Although I do know a bit about it, I’m going to leave the chat about the condition itself to those best qualified. There’s also a few of us here that are carers to loved ones with lung diseases (in my case my teenage daughter), so it’s a good place for emotional - and practical - advice in that regard, too.

It’s a lovely, friendly, and supportive group, so don’t be afraid to ask whatever crosses your mind. Whilst we can’t offer medical advice, between us, there’s very little we don’t know or have experience of when it comes to living with and managing respiratory diseases. Often more so than many GPs and even some hospital doctors, particularly with conditions like bronchiectasis where it’s not something they see or manage on a regular basis. The one piece of advice I will give is to become experts in the condition and how it should be managed, because sometimes you will have to advocate to get the right care if people don’t know what they don’t know. Which from our own experience can unfortunately be the case with anything a bit more unusual.

[Maninblack in reply to Hidden]

Thank you for your welcome and reply. Once my husband sees the consultant we will hopefully have a management plan. There is a lot of mention of physiotherapy but my husband has been on their waiting list for a neck/shoulder problem for 18 months. All we get is texts to say if we no longer need an appointment to reply ‘cancel’.

[Hidden in reply to Maninblack]

You won’t (shouldn’t) wait that long for respiratory physio: airway clearance (ACT) is singularly one of the most important things anyone with ncfb or conditions like it can do to help manage their condition. It’s the extra sputum produced that provides the home for bacteria and causes exacerbations (flares of infection), so clearing this sputum on a twice daily basis is really important. If your husband is generally quite productive, in the interim, you could look up the active cycle of breathing technique on YouTube whilst waiting to see the respiratory physio - this is a really straightforward, physio recommended way of breathing to clear sputum. It can take a little bit of practice, but it works really well for many people. I said I wasn’t going to offer specific advice, but the other really important thing to know is that antibiotics for bronchiectasis are ALWAYS a minimum of 14 days duration, the same as it is for my daughter’s condition (cystic fibrosis, which has bronchiectasis as an element of the disease). Many GPs don’t know this to be the case, but it’s another really important element of managing it.

There are national, clinical guidelines and recommendations for the management of ncfb from diagnosis through to daily treatment and airway clearance. I don’t know if it may feel like a bit too much atm, but if you’d like to read them:

brit-thoracic.org.uk/docume...

You’ll find the guidelines can be an extremely useful resource for making sure your husband is getting the correct treatment going forward.

[Caspiana]

Hello Maninblack, 🙂👋

Welcome. I do not have bronchiectasis but there are many here that do and have years of experience living with it. You will get lots of support and encouragement here I am sure. Beat wishes to you both.

Cas xx 🌿

[Maninblack in reply to Caspiana]

Hank you for your welcome. Much appreciated. You have a lovely day as well x

[Damon1864 Volunteer]

Hi and welcome to the site, not a bronchiectasis but there are lots of people on here that can help although we all support each other. Have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻

[Maninblack in reply to Damon1864]

Thank you for your welcome and I am sure we will get support and comfort from the group. You have a lovely day as well x

[GintyFerguson]

Welcome ! I've had bronchiectasis for twenty years and living a good life. Your husband will get to know his condition and learn to live with it. Eating and sleeping well, staying hydrated and exercising are very important. Submitting sputum samples to doc when ill is vital and having a rescue pack of two weeks antibiotics is generally a good idea.I also take many supplements which seems to help.

Good luck...

[Tala1 in reply to GintyFerguson]

100% agree with everything Ginty has said. I was diagnosed 5 years ago but would have had it for 15yrs before that. If I stay fit, hydrated, sleep, watch the stress levels, and do my clearance exercises I'm pretty good. When I start feeling exhausted I realise I've slackened off on one of the above, especially if work gets frantic and I don't take time to rest /breathe. I also find hi dose vit C 2x daily makes a huge difference to how clear my lungs are.And if I feel symptoms getting worse, I'm really quick to get a sputum sample to the lab and start my antibiotics.

[Izb1]

Hi Maninblack and welcome to the site. You will find alot of information on bronchiectasis on this site , you can type this is in the search box and it will bring up past posts that you can read through. Most gp and respiratory consultants dont know enough about bronch so find a specialist in a hospital near to you and ask your gp for a referral. Charlie G has given good advice and clearance is very important. It is good to read up everything you can about this condition so that you get the right care. We are all different so need different meds, if you have been given an inhaler and its not working then say so, you need all the help you can get. I learned more from this site than anywhere else so if you have any questions then please ask, we are a friendly bunch x

[Alberta56]

Welcome to the forum. I have bronch, diagnosed 3years ago. I agree the literature is a bit overwhelming, so go through it little by little. The only thing I would add to the advice you've already been given is, if you are offered Pulmonary Rehabilitation, jump at it. It did me a lot of good. Good luck to both of you. I was still going to exercise classes and doing the garden until lockdown messed up my fitness- now trying to regain it. Stay as fit as you can. xxx

[CDPO16]

Hi and welcome to our friendly forum

[LissacFrance]

Only short reply as must take dogs a walk. Keep up as much exercise as possible, make your lungs work. It can lead to increased lung capacity and better oxygen uptake. Good luck, and no doubt chat again.

[Egpa]

Morning, don't panic it's not worth it, your husband will get to know his body and when he needs meds. Physio is a good part of keeping well. Shifts all the muck. Depending on your consultant the physio will explain the best way to clear the muck either with exercise, a Flutter, AerobiKA and nebuliser. All were given me through gp and hospital. You will also get to know when your cough changes to a bark and muck changes colour. When you do need meds alway take a sputem sample with you to check correct antibiotics have been given to you. Good luck, stay calm, it daunting at first for everyone.

[watergazer]

Hi and welcome. I have mild bronchiectasis which was diagnosed by CT scan. I was initially seen by a respiratory nurse at the hospital and the condition was discussed from symptoms to the worst case scenario. Luckily I don’t have sputum ( except when poorly) to manage. My condition hasn’t worsened in 12 years and I manage it by diet , exercise which is really just walking now and my fostairnexthaler. There are people on here who are more experienced than myself and with worse symptoms who can explain what they do. Take care. Write down questions for when your husband sees the specialist and I would suggest that you accompany him and listen to what is said as it Can be a lot to remember for one person xx

[cofdrop-UK]

Hi Maninblack and a very warm welcome to you and your husband, although I am sorry to hear to hear of his diagnosis of bronchiectasis on the one hand, but the fact it has been dx means between your medical teams and, very importantly self management, your husband’s quality of life should improve.

It must seem an age to April but that will give you time to work out and jot down questions you will both have. I alwYs find it best to do this in bullet point form, as during a consultation it’s easier ro follow. Your husband’s consultant will should cover many if the points you will have before you ask.

I am nor surprised you are overwhelmed by this diagnosis. I know that feeling of being overwhelmed re medical issues, although not in relation to bronchiectasis. The reason being I was diagnosed as a 5 month old baby at the start of the NHS. That in Itself I hope you will find reassuring, as non cf bronchiectasis is not considered life limiting, although I can’t honestly say it’s not hard work to try and keep the status quo.

I hope the consultant you are seeing has a special interest in cf/PCD/Bronchiectasis and if it were me I would check this out online. A good team makes all the difference, believe me. You can expect the usual obs, spirometry if they are doing them at present because of covid, a referral to a respiratory phisio (they are often on site in specialist units). The physio will go through various lung clearance methods and gadgets called PEPS (which should assist with. Clearance) to see which ones suite your husban best. On e taught your dh will be expected to do them every day himself.

There is a lot to take in but I am going to put up a link of the ERS/ELF Patient Priorities - Bronchiectasis, which I had the privilege to be involved in for a couple of years. It is updated constantly. I would at the moment just dip i and out of. It covers normal lings, bronchiectasis lungs, treatment, self management (which includes physio techniques and gadgets. I would stay clear of the consultant to consultant discussions for the time being.

The first ever Patient Conference from last year is on there. The second patient conference is on 27th online and you would need to register. It is on Mothering Sunday but will be out onto the site at a later date. i will also put that link up for you.

Please ask any questions you or your dh have. If it’s worrying you then no question is trivial. There are a lot of bronchs on here only too willing to help. You will have already seen, they are lovely folks here.

europeanlunginfo.org/bronch...

healthunlocked.com/asthmalu...

With love

Cx

[peege]

Hi, I cannot better the above replies so just send you and your husband a warm welcome to a very supportive lung patient's forum. If your husband gets a lot of lung infections he may also be offered prophylactic antibiotics which is also in the NHS NICE guidelines for bronchiectasis along with being under the care of a hospital consultant- hopefully a specialist in bronchiectasis (because not all of them are), the sputum analysis whenever infection is suspected and a rescue pack of antibiotics and steroids.

Avoiding catching any bugs is something else to add to the armoury, knowledge is key so well done you for joining the dodgy lung club!

[Karenanne61]

Hi. Good advice already given so I'll just welcome you to thus friendly, funny and informative forum.

[MoyB]

Welcome to the forum!

Like your husband, I was given a diagnosis and sent away with a sheaf of papers to read! My first diagnosis was COPD; the bronchiectasis was diagnosed later.

I was frightened to death and became thoroughly depressed. Finding this forum was a life saver for me!

Through the forum I have met many different people who are living happy, useful lives despite their lung conditions. There are runners, dog walkers, teachers, engineers, parents, grandparents, young people and old people! We are a very mixed bunch!

What Charlie said about Bronchiectasis is correct. Not all GPs understand the need for two weeks of antibiotics to treat a flare up but, in my experience, they usually respond positively to a gentle reminder. Also, not all GPs like the idea of you keeping a 'rescue pack' at home, but this is highly recommended. In my rescue pack I have a choice of two antibiotics so that they can be alternated (i.e. I don't have the same one each time I have an infection - consultant's advice to alternate) and I also have Prednisolone (a steroid which helps to reduce inflammation).

A lung infection can escalate quite quickly and it is good to be able to phone a GP ( or 111) and tell them that you have the medication at home to start right away. They can then issue another prescription that you can collect when it suits you, instead of having to do so when you are feeling really unwell. This is invaluable at weekends and bank holidays when it is hard to speak to a doctor and often harder to find an open pharmacy within a sensible distance of your home. If your husband is issued with 'rescue meds' or 'standby meds' it's important that he lets the GP know if he starts taking them.

Something else that was mentioned was the ACB (active cycle of breathing) which your husband should be told about. Ideally, he would be seen by a specialist physiotherapist who can teach him how to do it, but COVID has disrupted a lot of these services so the idea of looking on YouTube is a good one. The British Lung Foundation (now renamed Asthma + lung) will have written information about this that should be available online or in booklet form.

Bronchiectasis can lead to an excessive production of sticky phlegm which needs to be expelled each day. However, at times, there may be little or no phlegm and this is something else that GPs are not always aware of. Respiratory nurses advise that the ACB exercises continue even when there is nothing obvious to expel as it helps to keep the lungs clear anyway. I'll admit to being a bit lazy in respect of this and often miss a day or two if nothing's coming up.

The thing I dislike most about having bronchiectasis is the persistent cough which can be quite viscious at times! People who don't know me can find it quite alarming, especially in restaurants where they think I might be choking on the food. Sometimes, all I need is a good thump on the back from my husband to shift the offending plug of phlegm. In these days where everyone is afraid of COVID, I feel I could do with a tee shirt saying, 'It's not COVID. I always cough like this.' 🤣

If your husband can be referred for Pulmonary Rehab it might help him a great deal. This is a group run by respiratory physios offering appropriate exercise and education. However, these groups have also been disrupted by COVID so he might have to wait a long time before he gets to attend one. Still, it's worth asking about - and if your GP says they are not running, ask for a referral to the Community Respiratory Team as someone there will have the up to date info. (My own GP told me that such a thing didn't exist in this area when, in fact, the groups were running about a mile away from my home.)

If you have a local BreatheEasy group, your husband might benefit from going along (you can go too) as my local group has been a mine of information and a lovely social group as well.

I've said far more than I intended to, so hope I haven't gone on too much about it all.

Please, do tell your husband that Bronchiectasis is manageable and also tell him not to believe everything he reads on Google!

My best wishes to you both,

xx Moy

[Maninblack in reply to MoyB]

Thank you for your reply, which is much appreciated. We feel more reassured now and more prepared when we meet with the consultant.

My husband doesn’t use the Internet so won’t be using Google, which is why I joined this forum.

Best wishes to you as well and have a good weekend x

[HollyBoyd]

You have been given so much information to digest Maninblack. I just wanted to say hi and welcome to this very friendly and supportive forum. Best wishes to you and your husband xxx

[jooloo]

The hardest things for me with bronchiectasis is doing the airway clearance when really tired and drinking enough, 2.5 to 3 litres a day I was told by the respiratory physio. It sounds loads, but get bigger mugs and switch to decaf tea and coffee as they count. Others around you can help by reminding you to do your clearance well before bedtime , also by helping you get into the routine of drinking more. An glass or orange as well as your brew in a morning for example. You don't end up weeing loads more as you woild be surprised how much your lungs use up.

[Maninblack in reply to jooloo]

Thank you for your reply. My husband is on water tablets so not sure how this will affect him. He already has decaffinated tea and coffee in big mugs. At the moment he is getting exhausted by waking up in the early hours coughing and struggling to clear it. This just saps his energy. No doubt help will be at hand once we see the consultant next month.

[JetJet]

Hi, I am here because I look after my Mum with bronchiectasis. The members here are always so supportive and helpful.My Mum also struggles to sleep with coughing at night so she will sympathise with your husband ( and you).

There are also some medicines that help to thin the mucus to make it easier to clear when doing clearance techniques. Hopefully that was on your information sheet. They may not work for everyone but worth looking maybe.

My Mum is 94 so has numerous other health problems and loss of mobility which doesn't help but she is also not very good at heeding a change in how she feels or changes in her cough/sputum/fatigue so sometimes we miss the start of an infection/ exacerbation. Hopefully your husband will be able to tell when he needs extra help.

Good luck and welcome aboard.