More questions about Bronchiectasis

[Kelly100]

I was comforted for a while after I came on here and was given some really encouraging stories that gave me hope for my sons future . I started looking on the internet again and blf forum and have scared the living daylights out of myself.

It seems like a lot of people really struggle with this but I’m wondering if that’s because health forums usually attract the most ill so you don’t get to hear the ones where it seems to have little effet on their lives? What I wanted to ask also is how long do people go without infections? Can you go many years or is this to much to expect?

I’ve copied in part of the consultant letter for you to get a better idea of my sons Investigations:

CT 6th Oct:

Nontapering airways bibasally, some of which demonstrate marked mucus plugging as well as tree-in-bud in keeping with bronchiectasis.

CT chest 9th Oct 2020:

Mild bilateral lower lobe bronchiectasis with mucous plugging, as seen previously, and associated with a small focal area of consolidation at the left lower lobe (unlikely to be of great clinical significance).

CTPA 14th Oct 2020:

The right middle lobe is collapsed and the right lower lobe bronchus is completely opacified, with developing consolidative collapse of the right lower lobe. The segmental branches of the left lower lobe bronchi are also opacified, with developing consolidative collapse of the left lower lobe

CXR 21st October:

Right lower zone now appears largely clear. Blunting of the right costophrenic angle is consistent with small effusion.

There is also blunting of the left costophrenic angle and further soft tissue shadowing at the left base suggests combination of consolidation and fluid.

Micro

Sputum 14th October: Pseudomonas aeruginosa (fully sensitive)There was an associated

Negative sputum 19 the and 20th October

Thank you

Kelly

[Hidden]

You know what Kelly? Just put all of that away and concentrate on encouraging your son to learn as much as he can about his bronch and to get busy managing it. This is the way he will live a long and productive life with bronchiectasis, rather than shuffle through life 'suffering' from it. Much as you want to, you cannot do it for him.All of those details are irrelevant to the patient. It is learning the signs of an exacerbation and how to source his antibiotics, scrupulous emptying mucus from the lungs every day and a healthy lifestyle that is important.

The details of the state of my lungs are far worse. So I hope that this cheers you up and points you in the right direction.

I learned to manage my bronch from the age of six. I went to grammar school, worked as a disc jockey around the world , married in Beirut and escaped the civil war, had two children, ran a manufacturing business, went to uni in my 40s and am now a guide at a heritage visitor attraction. I turned 70 in the lockdown. So you see, your son has a lot of living to do. I am not alone on this forum as having such a full life with bronch.

You cannot get to grips with this for him. Only he can do it with your encouragement. We are here for any support with managing the condition and the medics.

[Kelly100 in reply to Hidden]

I hear what you are saying. I just have lots of dark moments and I suppose I’m looking for reassurance that this isn’t going to take over his life and be one infection after another every time he gets a cold or is run down. Thank you

Kelly

[Hidden in reply to Kelly100]

It shouldn’t be if he learns to take measures to avoid other peoples’ germs, to take his antibiotics at the first sign of an exacerbation and most importantly incorporate emptying his lungs of the fluid in which the germs breed. I can’t remember if you said that he has a bronchiectasis specialist consultant. A general respiratory consultant will not do. GPs know virtually nothing about bronch and general respiratory consultants very little more. They do not have the training or see many bronch patients.They tend to treat it as copd and it is very different. Bronch specialists are usually at big teaching hospitals. They also have their own physiotherapists to teach him how to empty his lungs. The specialist decides which antibiotics, the dose and course and the delivery system and informs the GP of what to do. He should find a name, hopefully close to where he lives, take it to his GP and insist on a referral. He shouldn’t take no for an answer.

My main relationship is with my bronch specialist through her secretary and my GP is very cooperative with her. If your son gets the support of a bronch specialist this should help to give you more confidence that it will not ‘take over his life’. It is a fact of his life as it is with many of us but if he gets knowledge and a management routine it shouldn’t stop him doing anything that he wants to.

Unfortunately this is one of those situations where you cannot do it for him. You can only hope that he wants to lead a full life himself and is prepared to help himself. If, as I suspect, he is perhaps trying to pretend that he doesn’t have bronch or that there is nothing pro active that he can do, it may be a good idea to download information from the British Thoracic Society, BLF and Bronchiectasis R Us on self management. Leave them with him. Eventually he hopefully will decide that his future is in his own hands.

I do appreciate how awful it is for you but he will have to come to it in his own way. I am a Mum too. My son smokes. I speak to lovely people on this forum who are struggling with copd from smoking lung damage and yet I cannot get him to give up.

You are a very caring Mum and I do hope that the more you personally learn about the positive side to living with bronch, the lessglum you will feel.

[Kelly100 in reply to Hidden]

Thank you for your kind words .

Kelly x

[Hidden in reply to Kelly100]

We are here for you.x

[O2Trees in reply to Hidden]

Excellent and caring replies LP. And fascinating history of your life

[Hidden in reply to O2Trees]

Thankyou 02Trees. I do care so much that those who suddenly have these conditions thrown at them don't believe that it is the end of their productive and happy life or that of their loved ones. I am not alone in that as replies from others prove. Finding this forum and the caring members is the best thing that anyone can do for themselves.x

[O2Trees in reply to Hidden]

Agreed!

[Kelly100 in reply to Hidden]

Thank you so much for all your words. I really appreciate it especially when I’ve got myself worked up. You really have been so kind to give up your time to calm me down . Wishing you good lasting health x

[Hidden in reply to Kelly100]

You are welcome. It is natural to have our moments of panic, especially when it is not you but someone you love who is going to have to come to terms and learn to live the best life they can with their condition.Believe me I do know and understand. Three years ago my grandaughter, then thirteen, was suddenly diagnosed with type one diabetes. Over night she had to learn what it was, how to test her blood multiple times each day in order to read her sugar levels. Also to monitor her food and to inject her insulin several times each day. She has never allowed anyone to do it for her.

As a family we got behind her, supporting her in any way that we can and three years later she has just had good gcse results, wears a sugar reader attached to her arm which sends signals to her mobile phone, together with mine and those of her parents. Next month she is being funded with a pump which reads the sugar levels remotely and delivers the insulin. Her life will improve dramatically.

Her mental health is good-in fact yes she can be a bolshy teenager!

It was me who sat on my bed in those first days and sobbed my heart out for her because it was I who knew the full implication of living with a lifelong condition. But then I realised that I had done it and had a wonderful life. Today the new treatment method, drugs and support mean that those in that position, whatever the condition can take control and move onwards and upwards. A big hug for you.

XX

[Mooka]

Hi Kelly100

Your concern is understandable but please listen to Littlepom. What she doesn't know about bronchiectasis isn't worth knowing. We all get infections from time to time but you learn to manage them. Keep away from germs particularly colds as much as possible and keep those antibiotics handy for the occasions when things do go wrong. You may need to be proactive at times, if the infections keep coming back the antibiotics aren't the right ones or he's not been given the standard two week course so you may need to get your elbows out with your Doctors. Its all new at the moment but your learn to incorporate all the preventative measures into daily life.

[Kelly100 in reply to Mooka]

Thank you for taking time to reply and your suggestions. I’ll take it on board. I hope your managing well and wish you lots of health x

[cofdrop-UK]

Hi Kelly

I absolutely feel for you. I think it must be so very hard to see your children, no matter their age, with a health condition. It must have been a tremendous shock for you after going through one condition with your Son, then to find, by accident, that he has another which you probably hadn’t heard of before.

That being said some of us have gone through our lives living with bronchiectasis and not being defined by it. I can see your point feeling that many people on forums appear to be more on the severe side. However I have known many people with bronchiectasis on forums who are not but find information that they find lacking from clinicians. People of my age too have other health condition in the mix. However we lived a good life, by being compliant to a good management plan. A bit difficult when young. I know, although in the main I did physio when a teenager, I would defo give it a miss for a party or a date with someone fit! Most younger folks, no matter what they have are less compliant.

The frequency of infections vary at different times. Usually more than 3 or 4 per year they start thinking about prophylactic antibiotics or nebulised abs but that would be up to your Son’s consultant.

Stick to reputable sites Kelly.

I hope your Son has a good team around him. He certainly has a good Mum and you will be his rock.

Love cx

[Kelly100 in reply to cofdrop-UK]

Such lovely words. Thank you. I really hope and pray my son is able to be care free and not have this hanging over him. It’s all I want. He has had asthma but it’s never bothered him and he’s never had exasperation’s . If it’s like that I would be so happy. For some reason I have in my head asthma is much more manageable even though I know there are many people who have it severe and have a difficult time. I don’t know. I feel like I’m in denial and I want to wish it away to be something not to worry about. Thank you and wishing you continued good health.

[crashdoll]

You’ve had some good advice but I wanted to say that it’s perfectly understandable you’re worried. He’s your baby, no matter how old he may be. I started having lung problems 3 and a half years ago, then I was finally diagnosed with bronchiectasis. I’m 32 now but my mum definitely still worries about me. I tend to be selective with using forums. I find the BLF Healthunlocked the best (and I’m not just saying that!) because I get sensible advice with kindness. So, I would recommend you spend time where you feel both reassured and supported, not scared and stressed.

I’ve learned more about living well with my condition on here than I could ever have learned from any doctor. This isn't to criticise any doctor, they just don’t have the time. Plus, learning tips and tricks from people who live with the condition is invaluable.

[Kelly100 in reply to crashdoll]

Thanks for the kind words. He’s been chronically unwell for so long I find it difficult to separate the young boy to the young adult. Mums eh! I hope you’ve managed well with your Bronchiectasis and it hasn’t impacted your life.

Take care

Kelly x

[LissacFrance]

My wife has bronch and yes it took a long time for doctors to accept that it was not COPD, not asthma, nor any of the other lung problems. Regular treatment is physio 3 time per week, the Physio actually comes to our home where we also have a caravan and he uses the caravan so as not to come into contact with rest of family. My wife also takes antibio 3 times per week. next appointment, September next year. Must add that we are in France. Take care, and more importantly take exercise!

[Kelly100 in reply to LissacFrance]

Thank you for the reply. My son had physio while in hospital but hasn’t seen anybody since. Hope your wife remains healthy

Kelly x

[watergazer]

Hi Kelly a bronchiectasis diagnosis can be alarming especially when you are told the extremes that can happen. I was especially scared when first told and I did have lots of flare ups in the following years until my meds were changed and also started taking vitamin D3 as mentioned by lungies on here , now my bronchiectasis is hardly bothering me at the moment and infact I would say I am in better condition than my non bronch hubby. As a mum I worry about my children aged 32-42 but I have to let them get on with their lives. Your son can lead a normal life; going for walks ; drinking plenty of water. My diagnosis has hardly changed in 12 years- I'm lucky xx

[Kelly100 in reply to watergazer]

Thanks for taking the time to reply. I’m glad to hear you are on top of it now. And it’s really good news that it’s remained the same throughout all those years. I hope my son has the same good fortune. Vitamin D is something he’s started. Best wishes

Kelly x

[watergazer in reply to watergazer]

A little more info about me though every one is different - I think I’ve had my lung problems since I was 5 due to whopping cough and measles. I always struggled in sports and during the winter months especially as I was a primary school teacher- a real breeding ground for bugs Something good- I walked up/ climbed Croah Patrick in Ireland last summer which is a bit of a climb. I am 66.

In time your son will learn to understand his body and to deal with exacerbations. Take care. Xx

[Kelly100 in reply to watergazer]

Amazing! You’ve had a great life and not let anything stop you. Thank you for this . Here’s to many many more years of continued health and life x

[Response]

I agree with Pom (the Bronch Oracle here)

My mum has Bronch - I used to check her sats and temperature 3 times a day to preempt issues and this was making me crazy - more importantly it was unnecessary.

I'm not a doctor and each person's conditions are individual to them so I can't talk specifically but being alert to changes, rather than constantly watching (as if you're in an observation ward in hospital ), means you can live more normally, (especially as stress can cause other issues that can be dangerous.) So perhaps have a trial month to just do what the drs have suggested, without all the worry, and have everything ready for any bronch related issues e.g. antibiotic recue pack. Then after a month you can see if constant vigilance is a waste of time or needed.

Just a point - Normally my mum (elderly) has 3 exacerbations a year - since lock down, we've shielded in doors (since Feb) and she hasn't had any infections. All we used to do was walk round the supermarket before a few times a week so perhaps avoid supermarkets if possible.

Helen

[Kelly100 in reply to Response]

Thank you for the reply and suggestions. Good idea . See how it goes especially as it’s so new. Best wishes to you and your mum

[Blackcat99]

Hi, Kelly! I agree with all the comments here. I only got the diagnosis about 3.5 years ago but it is now obvious that I've actually had it and many of its symptoms since I had several years of TB, 60 years ago. In that time, I've had a career, married, had two children and a very active outdoorsy life. I ran a Guide company, I've hill-walked (and done some climbing) in Scotland, also in the Alps, the Pyrenees, the Dolomites. Took more effort than for many other people, but I enjoyed myself. In some ways, I think I was lucky not to have an earlier diagnosis, as it stopped me thinking of myself as an invalid and just sitting back! So - please be careful that you don't let your own very understandable anxiety stop your son living his life as fully as he wants to? Exacerbations are a problem but you and he will learn to manage them - taking all the right steps to prevent them taking hold, is the key to much of it. Listen to the advice from Pom and the others, try to stop over-concentrating on medical reports (which almost certainly look a lot scarier to the lay person than the consultant realises) and help your son avoid the risk of defining himself as an invalid. Hard to do, I know - but you're a Mum, you can do it!😉

Good luck!

[Kelly100 in reply to Blackcat99]

Thank you for your reply. I completely get what your saying. I’ve got myself in dark place thinking it’s the end of world and it’s affected my outlook. I hope my son is just as active as you have been and is able to live an active and full life taking risks like any other person of his age. It’s all I want. Thanks for taking the time

Kelly x

[Blackcat99 in reply to Kelly100]

You’re welcome, love! To be honest, it’s much easier to be ill yourself than to watch your child suffer any way. Keep using this forum for any queries or support when you feel a bit down, please?

Janice x

[Ladyindistress79]

Hi., Kelly, I can understand your worries but try and put them to the back of your mind. I am 79 years old with bronchiectasis and am hoping to carry on for a while longer. I keep a supply of antibiotic and steroid in my wardrobe which gives me a sense of security in case I take ill at the week end. Other wise I am fairly lucky in that I manage very well and hope to celebrate my 80th birthday next February.

[Kelly100 in reply to Ladyindistress79]

Thank you for taking the time to reply. I’m in no doubt that you will have an amazing 80th birthday. Wishing you continued good health Kelly x

[Debbie2005 in reply to Kelly100]

Dear KellyI hope you don’t mind me asking how you and your son are managing since your sons diagnosis. I found out on Christmas Eve that I have mild Bronchiectasis and had never heard of it. I had a very brief conversation with the specialist who told me and was given a leaflet and sent away with a prescription for some carbocisteine. When I came home I started googling and have frightened myself in what I am learning. I have been very low and finding the news so hard to process, I just can’t seem to see any positives. I have a 15 year old daughter and hate her to see me like this as I am usually a happy go lucky person. I wondered how you were and if you could advise on how you and your son have dealt with it. I’m sorry to ask

[Kelly100 in reply to Debbie2005]

Hi Debbie . I know exactly what you are going through and I feel for you. Please hang in there. It’s a massive shock at first to be told but believe me it gets easier to come to terms with. I have just looked through your other posts and I had the same difficulties understanding what was happening. My son has coped much better than me but it’s probably because he has another chronic illness in his ibd. My main worry and fear was the word progressive as well but after listening to others experience with this and speaking to doctors my understanding is it’s progressive in the fact that with every infection it can cause damage to the lungs. The goal is to keep infections down to a minimal and treat quickly with antibiotics to prevent that damage. Most importantly any mucus you do have in your lungs needs to be bought up through lung clearance. You say you don’t seem to have much mucus and my son is the same but he has had a few physio sessions on line to teach him how to do this and I’m sure once you see your consultant they will arrange this for you. I’m very aware of how overwhelming all this information is. It’s not nice being told you have something that can’t be cured and the only thing that can treat it is yourself doing your lung clearances or antibiotics when the infection is already there but trust me my son finds himself clearing his lungs naturally through the day without even realising it. He didn’t like the carbocistiene as it gives him a stomach ache but does fine without it.

There are a lot of people on the BLF that have had bronchiectasis since childhood and have a lifetime of experience. They have been so reassuring to me when I was completely loosing it so please post on there and they will put your mind at ease.

I’ve come to realise that a diagnosis doesn’t define him. Nothing has changed since his diagnosis symptom wise we just know what it is and how to help it. It’s annoying having the cough but his life hasn’t changed.

If you look back at my replies you will find some really good suggestions .

I’m still learning and coming to terms with it but it does get easier I promise you.

Any other questions you have I’m more than happy to try to answer.

Take care

Kelly

[Debbie2005 in reply to Kelly100]

Hi KellyThank you so much for your reply, I appreciate it. I am really struggling to get motivated and to keep positive about it all, I think I am in shock as I really thought I only had a gastric reflux cough and that is what I’d be treated for. As I had a CT scan the lung specialist was only really concerned in delivering me the good news that I had it got cancer and was very brief in delivering the news of mild Bronchiectasis as I suppose his field was mainly the lung cancer clinic. As it’s been over Christmas the helplines have been closed so it’s been difficult to get some reassurance from the experts apart from this website where I saw your post.

I’m so glad that your son is coping with his condition well and I know from your previous posts how upset you were so it is reassuring your feeling better about it now.

Thank you

[Kelly100 in reply to Debbie2005]

My son had his cough for a year and was back and forth to his GP. They gave him different asthma medications which didn’t work and then started treating him for silent reflux with omeprazole which did make a huge difference to be honest. His consultant has said that reflux can contribute to symptoms so I wouldn’t be surprised if there is still an element of that with you. Also sinus problems can be an issue in bronchiectasis so be aware of that. It’s all about treating as many triggers as possible. I do get the sense that many doctors try to belittle bronchiectasis and don’t take in to account how hard some people’s symptoms can be for them which is not helpful when you’ve just been diagnosed and told to go about your normal life without any explanation.

It is so frightening having a diagnosis but it doesn’t mean life is over not by a long shot. I was saying the other week that it feels more scary because I’ve never heard of it before but his consultant has said it’s probably a lot more common and is very under diagnosed ie: asthma, reflux

Give yourself time and please don’t google. I’m exactly the same I google to try and reassure myself but end up reading the worst case scenario as is always the case on the internet.

BLF Helpline was really helpful to me.

Kelly x

[Debbie2005 in reply to Kelly100]

Hi KellyThank you for your reply, I too had had a cough for about a year and the Doctor tried changing my lansoprazole to omeprazole back in July (as I have had silent gastric reflux for some years now) but the Omeprazole gave me some side effects so I switched back to lansoprazole. About a year ago my doctor suggested having an endoscopy to check why I had this cough then when COVID broke out the procedure got delayed until recently and the results were fine for that. It was only when I pointed out again to my doctor about the cough and sticky mucus that I still had from a year ago that I received an urgent referral for a CT scan on Christmas Eve and that’s when my diagnosis was found. I have never been a smoker and was asked if I had untreated pnuemonia/measles or TB as a child which could of caused the scarring but to my knowledge I havent. The more I am reading the more I think that it may be the silent gastric reflux that has caused my condition. I do have mild problems with my sinus at the moment especially at night and feel like I have a mild cold, is this something that could make the Bronchiectasis worse? It’s not knowing when to quickly react fast enough for antibiotics without this condition worsening which is my greatest fear until I see a specialist sometime in the near future.

Debbie x

[Kelly100 in reply to Debbie2005]

I know exactly what you mean. My son has only had one chest infection and that was about about 7 years ago so I was unsure what to look out for as well. My understanding is if the mucus colour changes to a darker colour his is always light beige or you start coughing up more than usual then you probably need antibiotics. Also if you feel generally unwell or have a temperature. The thing to be aware of is lots of people do tend to have a mild disease that don’t have many infections but you do have to proactive in clearing the mucus from your lungs as this is what causes the infections. It definitely is the case that sinus issues can contribute in symptoms o it might be a good idea to get some nasal sprays from your GP as it will help minimise your symptoms. Avamyst has been recommended by some people I have spoken to .

I feel like you’ll feel in much more control when you have your appointment with your consultant and they will recommend and liaise with your doctor about the right antibiotics you’ll need should you get an infection. I’ve been told it’s very important to get a bronchiectasis specialist as general respiratory doctors and GP’s don’t know enough about this condition and how to manage it.

Kelly x

[Debbie2005 in reply to Kelly100]

Hi Kelly,Thank you for the information it is very helpful. My mucus at the moment is thin and clear on most days but I am feeling the need to cough deep from the lungs for about an hour or so after getting up in a morning almost to the point of wretching slightly to get rid of the phlegm and not that much comes out it’s just the feeling of needing to cough. It sounds like the cause of your sons condition is as baffling as mine especially if he has only had one bad chest infection in 7 years! I did have one bad lung infection last year in December whereby for the first time I needed steroids and two lots of antibiotics and a spray and wondered if this infection I had caused my condition or maybe it’s the reflux (I suppose I will never know for sure). Thank you so much Kelly for taking the time to reply today I do feel slightly better in the information and advice you have given me. I do hope your son is okay. I’m hoping to see a specialist shortly but I have a feeling it’s a respiratory specialist rather than a bronchiesctasis consultant (I googled it and there doesn’t seem to be many of them in the UK). I am based in the North West and we have a couple of excellent hospitals but not too sure if they have the specialists trained in just this condition. xx

[Kelly100 in reply to Debbie2005]

You are welcome . Anything I can do to make you realise it’s not as dreadful and frightening as it seems is something I am more than willing to do as I found that so reassuring and comforting to me. When you see your consultant they should refer you to physio so you can clear your lungs more easily without exerting yourself so much which can be tiring.

My son used to cough mostly in the morning about an hour after waking up and after eating but when he started the omeprazole and started sleeping on a wedge pillow which raises his body it all settled down. He now has random coughs throughout the day which doesn’t seem as harsh.

His consultant has said his bronch is from his ibd but lots of people have theirs from chronic reflux so don’t count that out. Some never know what the cause is.

My son has asthma as well and has found steroid inhalers helps control symptoms as well .

I read so much about lots of people living with this all their lives and it hasn’t stopped them living an ordinary life like everyone else. That has been the most comforting to me.

Maybe research different teaching hospitals in your area and click on respiratory consultants to see if they have special interests in bronchiectasis.

Kelly x

[Debbie2005 in reply to Kelly100]

Thank you Kelly, I am so appreciative of the time you have taken today to explain everything in detail and help settle me slightly. It was only after reading your initial post of when your son had his diagnosis that I was feeling all the pain and despair that you were and wondered how you had gone on from the reassurance of the other members. It is easy for me to look into the worst scenario of the condition rather than take a step back and deal with today and tomorrow first, but thank you so much xxx

[Kelly100 in reply to Debbie2005]

I completely understand. It takes a lot of getting used to but as time goes on you start to become more comfortable with it. You’ll realise actually I haven’t changed , yes I still cough but I know how to manage it. That’s how I look at it with my son. And it really hasn’t changed anything he just has a name for it and feels better as he is able to reduce his symptoms. Give yourself time Debbie you’ll start feeling a lot more positive about your diagnosis. A nurse I spoke to at BLF said Asthma causes lots of chest infections and mucus as well. We are just more familiar with that name so aren’t as scared of it albeit it’s reversible but it still causes these symptoms.

Kelly x

[Debbie2005 in reply to Kelly100]

Hi Kelly Sorry I nipped out shopping in between your message. Yes I feel much better this afternoon after speaking to you, I have been feeling so bad since Xmas eve and thinking above and beyond the mild diagnosis I have been given sending myself into despair. With not knowing anyone personally with this condition I have felt so alone but it has really helped talking to someone who is going through the same. Thank you once again and hope to talk to you again soon x

[Kelly100 in reply to Debbie2005]

☺️