28 years old - recent Bronchiectasis diagnosis

[KellyAFC]

Hi, I am 28 years old and have recently been diagnosed with Bronchiectasis following a Ct scan of my chest. I have been suffering since April 2019 and been under a respiratory specialist for two years. Diagnosed originally with severe asthma, recurrent infections following a bronchoscopy and sputum samples. I am quite shocked about my diagnosis given that this is something which is not treatable. I have excessive mucus everyday and most of you will be aware of the impact this causes in daily life.Any advice or tips would be greatly appreciated! ThanksTom

[Oshgosh]

welcome to the forum.loads of people who are available to help

[Oshgosh]

when I joined this forum, I found it was better if I asked specific questions.as it’s such a big subject it’s impossible to cover it all at once

[teddyd]

Hi. Pre diagnosis of bronchietasis I felt pretty miserable coughing, infections etc. Once I got my diagnosis and got the correct medication life became much more manageable. It took a while for medication to be tweeked to get the the best packaged for me, but once it was life settled down . Take care x

[Spanielblue in reply to teddyd]

What was the correct medication for you? I have been taking Amitriptyline tablets for "cough and mood" and also Carbocisteine to thin mucus. I am not sure whether the tablets work now as have been taking them for a long time but still coughing. The latter gave me flu symptoms so stopped taking them and now waiting to talk to the respiratory nurse about continuing with them. I have spoken with consultant and she thinks the only option I have is to have a nebuliser. Therefore, I am interested in finding out what other sufferers have been prescribed.

[teddyd in reply to Spanielblue]

Hi i gave asthma and Bronchietasis. In general these are the meds I take.Montelukast. Relvar,azithromycin, braltas, carbosistene

Nebulised saline and sabutamol.

Plus emergency pack.

[Spanielblue in reply to Spanielblue]

Thank you for information. I will look the medicines up to see if I think any of them could help me. I wish you well over Christmas.

[rosco59]

It’s a lot to take in when you’re first diagnosed, but at least you know now why you have been so ill and you can start to get proper advice and treatment. I think most people on this site would recommend trying to get access to a good Bronchiectasis specialist, something I’ve still not managed to achieve, but I have become more adept at asking the right questions and accessing the right treatment. Once you start to learn about how to clear your lungs everyday and the drugs you can take to help this you will begin to feel more positive I’m sure. I wish you well.

[ks1966]

Hello Kelly. Bronchiectasis is much more common than originally thought. I hope your Respiratory team figure out the cause. There is a genetic test that was done for me. In my case my Bronchiectasis was caused by Rheumatoid Arthritis. Bottom line is to clear your lungs with some exercises (postural drainage). What works best for me is to go on all fours. With my forehead touching the ground I take deep breaths and pout my mouth while exhaling. On the 3rd or 4th go you will start to hear a crackling sound in your lungs. Cough gently and the sputum will come out. People with kidney problems need dialysis. Some heart patients need pacemakers. People like you and I need to clear out lungs manually. This will help us avoid recurrent and longer bouts of chest infections. As friends who has Bronchiectasis once told me when we pass on from this life we will do so with this disease and not because of it. Good luck

[Alberta56]

Welcome to the forum. As the others have said, it is good to have a diagnosis, because then suitable treatments can be found to lessen the effect of the condition. It is very bad luck to get it so young, but some of our members have been living with it from a younger age than yours. I was getting horrible chest infections for some time until my surgery eventually referred me to a specialist. Since then I been much healthier- only one bad infection since diagnosis. I hope you will be the same. Best of luck.

[Izb1]

Hi KellyAFC and welcome to the site. There are quite a few of us here with bronchiectsis and THE most important thing for you to do is clear your lungs of the mucus everyday. Ask your specialist to get you onto a pulmonary rehab course this will help you no end to understand your condition and how to deal with it. Make sure that you get a mucus sample into your doctors so you get onto the right antibiotics. If you are having difficulty with mucus get your doctor to give you Carbocisteine which will help to thin it out, you could also try antihistamine which helps to dry it up. In the search box above, type in bronchiectasis and this will bring up previous posts on the subject, there is loads of information on this. I hope this helps a little x

[LissacFrance]

Hi, First of all it is treatable but not curable. At your age take as much exercise as you can, i.e. make your lungs work. Walking, two or threetimes a day, and once you`ve got some improvement, up the exercise. My wife has had bronchiectasis for best part of 60 years, walks our dogs at least three times per day but is also on Azithromycin 3x per week and physio 3x per week. The Azithro only came into use about 4 years ago when a consultant eventually said bronchiectasis instead of Asthma. Good luck for the future and take care, i.e. keep away from Covid if you can, keep the vaccine up to date. Chris.

[KellyAFC]

thank you everyone for your support and guidance so far. I have woke up today feeling much more positive about my diagnosis. I am already on Relvar Inhaler, Spiriva Respimat, Carbocisteine twice daily & Montelukast. I trust that these medicines are correct however I was only given the diagnosis yesterday and I am awaiting my next appointment with the respiratory specialist to review in detail and come up with a personal action plan.

Is there anything I should be discussing on top of this with my specialist?

[peege in reply to KellyAFC]

hi, I'm sorry to hear about your diagnosis Kelly. It's always a shock however a relief really to now learn as much as you can about bronchiectasis - often mentioned as bronch here. Its a massive learning curve, as Lissac says, it may not be curable but is definitely treatable and manageable .

Are you in UK? If so look up the NICE guidelines for bronchiectasis, there are several things you should be given ie :

*bi-annual respiratory check ups,

*prophylactic antibiotics at least in winter time (Azithromycin 250mgs is the usual one taken on say, Mon, Wed & Fridays. Some use Doxycycline),

*acsess to a consultant - preferably one who specialises in bronch because plain respiratory consultant know little about bronch & lump it in with copd or asthma.

There are a couple of other things too but I must rush off now. Others will probably be along to finish the list before I get back!

[peege in reply to peege]

great Tom, you've heard from the experienced best, Littlepom. She has reiterated the importance of getting a bronchiectasis specialist consultant - its most definitely worth travelling to your nearest teaching hospital for.

So as well as the above:

* Request that your con writes to your GP regarding putting a rescue pack of a good antibiotic, 14 days worth as Lp says. There's always someone here who'll help to judge when to begin them (I'm sure some of us know more than some GPs - when you can get hold of one!) Hence Lp mentioning a bronch specialist's secretary , very useful in your tool box. Exacerbations almost always start on Friday evenings, weekend & bank holidays! Untreated infections are your enemy and each infection lowers your immunity making you totally suscsusceptible to another one. In my experience most viral colds, sore throats & coughs always become bacterial needing antibiotics . My ex GP practice in Wimbledon were ace at teaching me how to manage what I have & giving me the rescue pack prescription however, I moved 🙃 🙄🤪🥴😳☹ in 2014/15 & this one is next to useless for me.

*request access to a respiratory physiotherapist to teach you the vital daily lung clearance....for all humans large & small once there's a pool of mucus in lungs it's a perfect environment to grow bacteria - & there are many types. There are YouTube videos on just about everything including the correct way to take different inhalers to lung clearance.

*avoid people with germs (easy to say I know especially if you have little ones), practice hand hygiene - at least that's easier since covid! Be careful what you touch in public places

*have flu, covid & pneumonia vaccinations.

*look at NHS sites not Dr Google

* you could also look up old posts with their replies on bronchiectasis &/or use the search box, the more you educate yourself the better.

wishing you a happy germ free festive season Tom

[Collienut]

It gets easier once you've been diagnosed, referral to physio to learn how to clear your lungs, medications prescribed to help loosen/clear up the mucus, rescue antibiotics instead of trying to get a Gp appointment.

I have asthma and severe bronchiectasis, diagnosed at 30 (now in my 50s), but had had breathing problems all my life, there are good and bad phases, but I always try to remain as active as possible (my border collies help with this!). A sense of humour helps as well! Oh, and keep hydrated to help thin the mucus.

[CDPO16]

Hi and welcome KellyAFC. There is lots of support here from our friendly members along with general topics and fun to lighten the tough days. I hope that you will be glad you joined us. Best wishes.

[watergazer]

hi and welcome KellyAFC. Living with bronchiectasis is different for us all. When I was diagnosed I was told I’d probably had it since I was 4 due to having had measles and whooping cough together I was in my 50s when diagnosed I don’t get a lot of mucus and since changing my inhaler a few years ago have only had one really bad flare up You’ve had lots of advice in other replies. Take care. X

[Lfcpremier]

Hi Tom. As horrible as Bronchiectasis is, it's not life threatening & you will learn to live with it. Try not to be too disheartened :find things you enjoy doing to distract. Like you I had haemophilus influenza, then streptococcus pneumonie initially.

I suffered from repeated infections in the first 6 months so the consultant put me on azithromycin (started in 1 daily but reduced it myself after 2weeks because it was affecting my stomach). For 11 years I have taken 1 tablet, 3x weekly & it has helped considerably.

As already said, lung clearance is essential, though sometimes, not easy. Using ventolin to open the Airways after taking Carbocysteine, then postural draining or breathing techniques. Hot tea or coffee, showers help.

Ask if you can have a rescue pack of antibiotics at home in case you need them, though I usually wait 24-48hrs as I get mostly viruses now. A sputum sample is useful but takes 5-7days so consultant suggested a simple blood test a CRP is a good idea, to indicate infection. That comes back within a day.

One other tip. I asked my consultant who I could refer to if I had a question. He very kindly gave me his email to get in touch.

Good luck! 🤞

[BronchyBronwen]

I was diagnosed with this about 8years ago, and appreciate that I have it more mildly than others here. Have kept worst excesses at bay with walking and singing in choir, both terrific for bronchiectasis. And everyone CAN sing. Matter of getting the right songs for your voice and the right choir leader/teacher. And it’s such fun!

[Patk1]

Welcome to the forum Tom.bronchiectasis IS treatable,not curable.u should ask to see respiratory physio who will teach u to get the mucous up.meanwhile u could read up on lung clearance techniques- active cycle of breathing/ postural drainage/ huffing technique.id start with morn+evenin initially.ea infection causes damage to airways so avoid people with coughs,colds+ viruses if u can + treat as flare up promptly- don't wait!do ask specialist about rescue packs too xxx

[Hidden]

Hi KellyAFC and welcome to the bronch club! I am one of those on this forum who have lived with it all of their lives. I was diagnosed at 3 and am now 72. I have had and still have a very full life.You haven't suddenly developed this. You have been struggling and living with it for a long time. Now you know what the trouble maker is the MOST important thing thing to do is take charge!

Of your daily routine, your treatment and your doctors. Yes, the doctors. Most GPs know nothing about bronchiectasis and tend to treat it like copd. Also many general respiratory physicians are not sufficiently trained or see enough bronch cases to be truly expert.

So the first thing to find out is whether the consultant you are seeing is a true bronch specialist. This is important because bronch is a complex condition. A specialist knows how to deal with its variations over time and also the many antibiotics and delivery systems to tackle exacerbations when the bugs in mucus in the lungs have a party, making you feel lousy. They also have their own physiotherapists to teach you to empty your lungs and usually a bronch nurse whom you can phone to ask for advice. They usually have lovely secretaries too who will get advice from them. Your GP will need the advice of the bronch specialist as to which antibiotic to prescribe for your exacerbations and making sure that you have a rescue pack of antibiotics to keep at home to take as soon as you start an exacerbation.

If the consultant is not a true bronch specialist, find one in your area. They are usually at large teaching hospitals. Take the name to your GP and insist on a referral.

For yourself, you need to keep yourself well and this involves self management of your condition. As others have said, it is crucial to empty your lungs of mucus every day. This robs the bacteria of the warm wet environment that they breed in. Make yourself a daily routine for doing this and fit it around your work/activities so that you can go about your daily life without being bothered by mucus wanting to come out.

We are all different. Some find it better to do it in the morning and again at other times later on. For me struggling to get it out in the morning has always been a useless exercise. I nebulise saline and salbutamol because I can't tolerate carbocysteine and clear my lungs in the early afternoon and again before I go to bed. You will find what is best for you.

Don't become fixated on having sputum tested and the bacteria that show up. These tests are notoriously unreliable in bronch where the consultant's decision on the antibiotic you should usually be given by the GP for 14 days and the dose is usually good for our exacerbations. One of the differences from copd.

You are the same person that you were before this diagnosis. You are just including its management into your life, which should improve from now on. Much as my granddaughter has done with her type 1 diabetes, diagnosed when she was 13.

Lastly, learn as much as you can about your condition. From your consultant and from the Asthma UK information. Don't go down the rabbit hole that is Dr Google!

We are here for you. You will have lots to ask and there are some very experienced bronchs on this forum.

[ghousrider]

morning matey yes 2013 i was taken in hopital i have copd/ bronical problems bad asma / new moaner in system / walking problems now using stick / as broke both ankles 2010/ allm i can say keep taking medication keep smiling / as doctor if they can ref er you to a local gym to help you with your mobilty all the best ghoust rider

[Lizzab]

It's a management issue. My symptoms are significantly different now. Better than when diagnosed 11 years ago.

It's your job now to continually pay attention to your body and symptoms and do what's right for you. Much to learn - a life long process.

You'll get there.

God bless X

[eccosse]

hey KellyAFC

Everyone on here are giving you the best advice as we all have the same kind of issues Being one of them with a great consultant it doesnt go away but it can get easier to deal with with the right help So try and find a consultant who does know all about bronch cos when you get an expert on your side who knows what they are talking about will make it easier for you to deal with You can control it and make a difference to your life We are all here for you if you wanna a chat anytime

[KellyAFC in reply to eccosse]

thank you

[gingermusic]

Hi Tom, how young to be suffering with Bronchiectasis. I was diagnosed a few years back and am managing to deal with it fairly well. I take Carbocisteine tablets 2 x 3 times daily which is the maximum you can take, and then I find that if I use saline in mt nebuliser 3 times a day this helps me remove the phlegm, Exercise is also helpful. Hope this can help you

[KellyAFC in reply to gingermusic]

thank you

[Beth1949]

A lot of good advice here. I've had Bronchiectasis for over 30 years. I'm 73. The advice I would give you:

Be proactive

Talk to your specialist, if the meds aren't working for you, discuss different meds.

Look around - check your environment (hidden mold in your house, goose down pillows, pet dander, etc)

Stress - My breathing gets worse when I'm stressed.

Alternatives along with prescribed meds, I take Turmeric every day for it's anti-inflammatory properties.

Exercise your lungs.

I was told by a specialist that having Bronchiectasis is due to childhood illnesses, such as whooping cough, mumps and measles. I personally think that events in your life can effect a person (I worked in a sewing factory in my early 20s, breathing in lint all day).

The difference between COPD and Bx, is that with Bx there is a weakening of the major airways, making it difficult to cough up mucus. People with Bx produce a greater amount of mucus.

Everyone's different it's just a matter of what mix is right for you, so don't get discourage, it will just take awhile to find the right balance for you, Beth

[KellyAFC in reply to Beth1949]

thank you

[Gloryvine]

Hi Tom, I'm 64 but only recently diagnosed with bronchiectasis. It's a shock to get a diagnosis, and there is a lot of information but we all process it differently. The breakthrough in my understanding of how to keep the lungs clear came only a week ago when I went to a fantastic respiratory physio. I learn best by "doing" and being shown. All the U-tubes in the world weren't going to do it for me! The physio checked my breathing and found that I'm a "chest breather," despite years of meditation. To keep the lungs clear, we need to breathe with the diaphragm, not so much the chest. One way to practice is to lie down with a book on the tummy, put hands on head (to disengage the chest muscles) and watch the book (or box of tissues!) go slowly up and down. Over a week, just taking it slowly, I've been able to switch to breathing with the diaphragm. This will aid in keeping the lungs clear and assist with other clearing techniques. Secondly, she taught me the "huff" breath, lying down, putting the mouth over a little cardboard tube and "huffing" gently, again from the lower belly, not the upper chest. Probably too much information but my point is, if you can get some people on board to go through the physio/drainage issues one by one, you might feel more in control of what you need to do. Very best wishes...

[KellyAFC in reply to Gloryvine]

thank you. I was referred to a physio last year for dysfunctional breathing in the chest. I have not until now taken it as seriously as I should have but will follow your guidance and practice diagphram breathing going forwards!

[Walkonthewildside]

Hello Tom, I don’t have anything to add to the comments already on here. Since my own diagnosis I have found this forum to be very useful and reassuring. Just like to wish you well : )

[LissacFrance]

Hi,

Not seen this post before and hope that advice is still welcome. The only treatment as far as I aam aware is Azithromycin. My wife has had bronchiectasis for best part of 60 years. We moved to France 30 years ago for better weather, ha, ha. It was only about 6 years ago that specialists decided that it was Bronch and not asthma, COPD, due to smoking etc. etc. She yakes Azithro 3x per week along with physio sessions 3x per week and tries to walk our 2 dogs 3x per day. Last bit not always possible when it is raining. We should have moved to Spain. Best of luck, Chris.