Hi all, I was diagnosed with Bronchiectasis when I was just 19 and at University- no underlying causes. At the time I didn't think much of it other than I had reoccurring chest infections but as I've got older my condition has worsened somewhat with pneumonia bouts and hospital stays. I also contracted Covid in December 2023. I'm 38 now, married with a young daughter (4) and I'm worried about my future, or lack of so looking for some support. I've recently had a CT scan, my last one was 10 years ago as my consultant believes there is some fibrotic tissue in my airways in my left lung. I'm waiting on the results and terrified about what these results might show and what this may mean for my life basically. I believe I'm very young to have this condition as all doctors, consultant, physios I've met since 2004 have told me and I want to live a very long, full life. I guess I'm just scared while I wait for the results so any support you can give, I would really appreciate 
Waiting anxiously for CT results - Lung Conditions C...
Waiting anxiously for CT results
hello and welcome. Now sit down, take a deep breath and stop catastrophying.
I have had extensive bronchiectasis since I was 3 years old due to bouts of pneumonia. I am now 73. I have lived a perfectly normal life. I have worked, had and brought up two children, run a company and travelled the world.
The secret to bronch is getting control and that means management.
Self management in clearance of the lungs every day, doing breathing physio and recognising when an exacerbation is coming on and beginning treatment. This is a routine which should be part of your daily life, not an emergency reaction to an exacerbation. Alongside this, a healthy diet and exercise. Whatever you like to do best.
The other aspect to management is the right treatment from a bronchiectasis expert. GPs know nothing about bronch and general respiratory consultants very little more. They simply don’t have the training or experience of it and tend to treat it as copd which it definitely is not.
It seems to me that you have just been left to get on with it. Hence the increasing infections and bouts of pneumonia. This can be avoided with the correct management.
I have lived with bronch, not been defined or suffered from it.
Now is the right time for you to take control. You are young, not too much damage has been done and you can give yourself a good quality of life. Look at the website of your nearest big teaching hospital for a bronchiectasis specialist. Take the name to your GP and insist on a referral. Do NOT take no for an answer. The specialist will know about the various antibiotic treatments and their delivery systems and will have their own physio who will help you with clearance tecniques and usually a bronch nurse to talk to. The specialist will tell your GP which antibiotics and other medications to give you, including a rescue pack of antibiotics to keep at home for when an exacerbation starts to party. Many GPs appreciate this because it lets them off the hook of pretending to know what they are doing whilst you decline due to lack of proper or speedy treatment.
You mention that the consultant thinks that you have some fibrotic tissue in your airways and has obviously frightened the life out of you. This leads me to the conclusion that this consultant does not understand bronch or has simply repeated to you what they have seen without thinking about your reaction. Funnily enough I was talking to my consultant
( who is very senior in the British Thoracic Society) about my scans this week. Fibrosis in areas of bronch damage in the airways is quite usual and not to be mistaken for pulmonary fibrosis which happens throughout the whole lung tissue and is something completely different. It does not prevent you from breathing.
I’m going to let you absorb that now. I’m sorry if I appear a bit hard but I am very keen that we learn the facts and how to look after ourselves because the medical systems snd medics in this country are so bad at it.
I leave the hugging to the other lovely members of this forum. Some of whom will be along with advice based on their own experience.
Good luck, take charge and come back whenever you need support.
Hello, I can't thank you enough for your reply. A lot of information which I will go away and process and do some investigations on so thank you.
You're so right with taking control of situation. I believe (to a point) I am getting specialist care as I'm under a very big teaching hospital in the Midlands with access to a specialist Bronchiectasis nurse and physio. What's tricky is actually getting in to see them with very long wait times but I am being persistent with speaking to the specialist nurse when it's needed.
The information you gave about the fibrosis has eased my panic as the first time I've heard this term from my consultant was via a post appointment letter with no way for me to have a discussion with what that could mean until my next appointment 3-4 months later. I have been on the phone this morning pushing for a cancellation appointment so hoping I can get in to see them sooner.
Thank you again for your message
You are welcome. I am with the QE in Bham and my consultant there for 20 yrs. I understand now that the fibrosis in the airways was in a post appt letter and not said to you. My letters have been saying this for 30 yrs and I have not taken any notice until my GP ( who has never bothered to read the letters) finally read the last letter and told me ' we are nearly at the end now with the fibrosis' and really upset me. This is why I asked my con last week. She was v cross at the ignorance and crassness of the GP and gave me the explanation that I gave you.Whenever I hear that docs have said that it is unusual for someone young to have bronch it puts fear and anger in my heart and takes me back to my youth when so many docs betrayed their ignorance of bronch by saying that to me. I am thinking that you may be with my team.Most resp nurses know nothing about bronch but bronch nurses have extra training. We have a good one at the QE. I don't know which hospital you are with but if you feel that you could do better look on the QE website for my consultant. It may take time to see her. You can pm me if you want to discuss our local hospitals and specialists. I'm sure that you are going to be fine because you are proactive and not afraid I think to ask questions. If you really need help or want to bring your appt forward call your specialist's secretary and treat her like a queen. Most of them are really lovely and helpful. I only ever get in touch between appointments if I am really feeling poorly and so when I do I get action. I hope that you feel calmer now as there really isn't anything to worry about with the scan. Whilst you are waiting for your appt concentrate on honing your routine of breathing physio and daily clearance of your lungs to deprive the bugs of the warm wet mucus that they love to party in and on generally keeping fit. Oh - and try to avoid other's germs. Having brought up 2 children and having 5 grandchildren I understand only too well what little germ factories they are. Our worst enemies.Now is the beginning of a positive life for you with loads of support from the folks on this forum.
Well said, Littlepom. Tough love goes a long way.
so sorry to read of your illness. I don’t have it but others on here will have it and be able to support you. Don’t despair and I wish you good luck x
Littepoms given gd advice.Do try not to worry.anxiety can have a bad impact on breathing.
Until u see respiratory physio, read up on lung clearance on aluk website; there r videos too + on you tube. I'd do it x2 ea day- i use disposable cups( disposed of with used tissues in cup,and nappy bags) so can see amount, colour&consistency.its the best indicator of infection brewing.treat infections ASAP with minimum of 14days antibiotics.ea infection causes lung damage so prompt treatment for us is a must.
Beyond that, as LP says don't worry. Enjoy Yr life, keep well with some exercise,even walking - Yr prob running with a 4yr old lol. I take supplements too and use coldzyme throat spray+ vicks rescue nose spray, if with family etc - they trap viral particles.i also carry antibacterial handgel everywhere.
Xxx
Hi there I was diagnosed with B'ectasis few years ago after recurrent infections like yourself & found out I had been colonised with a particular bug but it was a bit too late & the damage has been done. Caught Covid while in hospital with different unrelated problem & was so worried it would really do even more lung damage but after another CT scan was told no change. As others say it's all about being your own advocate & taking control i.e having a rescue pack of ABs at home as we know our bodies better than anyone. Ironically years ago I was a Nurse at the QE and guess which ward ? .. Yep Respiratory never thought I'd get B'sis after looking after people with it !! Wishing you all the best
You’ve had some wonderful replies so I just want to wish you better days ahead. Xxx
thank you so much for all of your messages! I've never spoken to any one else who has bronchiectasis before despite having it for so long so it actually brings a lot of comfort chatting to people who fully understand what it all means. I'm actually under the QE too 😂 and more than likely the same consultant Littlepom so I'll pm you so we can see if it's the same person. I really appreciate all the support from everyone
Welcome to the forum and very best wishes. xxx
I’m so pleased you’ve joined us, and especially that Hidden has been able to give you such great advice. Wonderful coincidence that you’re both at the QE!
When do you get the results. GOOD LUCK WITH RESULTS TRYING NOT TO WORRY WHILE WAITING FOR RESULTS EASIER SAID THAN DONE BUT TRY STAY STRONG X
Waiting for results is always a worry. It helps to try to concentrate on what you're doing today, to live in the moment rather than the future.
Littlepom's advice is wonderfully helpful, having lived a lifetime with bronch. Whenever fearful thoughts slip back in, remember her story and take courage again that you can cope with this too.
All the best
Hi, My wife has just had Friday`s physio session for her bronchiectasis which she has had since being 11 years old. She is now 73. As others have already mentioned you really do need someone who knows about this disease. It is not Asthma, nor COPD, or any of the other lung related problems. It took us a long time and numerous lung specialists before finding the right one. As well as physio, for the last 4 years she has been prescribed Azithromycin 3x per week. Not only is it an antibiotic but also acts as an antiinflammatory. In addition she aims to complete 10,000 steps per day, walking dogs, playing table tennis, riding exercise bike etc. Make sure you get the right consultant. BTW, we`ve both had Covid, and I was certainly worse than she was. We`re both vaccinated against flu and intend to continue enjoying life. Best wishes, Chris.
After reading I was also like you, worried that I'd be disabled, disadvantaged and thought that my life was over, after brilliant doctors appointments at Wythenshawe and Aintree hospitals i am now cared for by a specialist team. My exacerbations are monitored and treated by prophylactic azithromycin via the respiratory team. My infections touch wood are minimal and life is good, good luck got the future
Morning everyone, these are really inspirational stories so thank you. I should have joined this group many, many years ago! I’ll mention to my consultant about perhaps starting azithromycin as a prophylactic as it seems a good option especially if it’s an anti inflammatory xx
Hi and welcome
I’ve was only diagnosed with nrovchi 2 years ago but the consultant believes I may have had it since childhood mixed with brittle asthma so please try not to worry. CT scans are brilliant for making sure the consultant doesn’t miss anything and you get the correct treatment unlike years ago when only X-ray could be used. You are in the right place here, everyone is so helpful and very supportive and knowledgeable.
Take care
Wendy xx
Hi and welcome to this brilliant site. I came on here years ago looking for answers when first diagnosed with bronchiectasis and Littlepom along with a couple of others gave me so much information it really helped me. You have had some good replies and hoped it has helped you x
Hi there is nothing I can add in response but you will get some good sound experiences from peaple who know and also live good normally life this is a great forum
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