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Bronchiectasis

I have Bronchiectasis and i am only 20 sad i cant except that i have it and i have to leave my job beacuse of it sad i just need someone to talk to who has the same problem as i have cos i dont know anyone who has Bronchiectasis

Thank you Jen x

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  • Tessa

    Hi Jen,

    Sorry to hear that you have been diagnosed with Bronchiectasis. I have had it for 4 years now. I regularly see my respiratory consultant. I use inhalers to keep the airways open. I should do postural drainage to help cough up the phlegm, but my lungs are too damaged for that, so I do the best I can. Then I take antibiotics when there is an infection present, which can be quite often.

    I know how difficult it is to accept that your life has changed because of a condition that, up until now you have never heard of, The more information you have about this, the better you can manage the condition.

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  • Guest

    Hi Tessa

    Thank you for writing back smile i am feeling really fed up today about it :cry: its my left lung that is damaged on my lower lobe its just annoying and i hate having bronchiectasis sad i dont smoke either so i find it hard to except that i have it and why do i have it when i am only 20 i just dont understand sad no one else in my family have it

    How damaged are your lungs? how long did it take for your lungs to get more damaged? i am worried because i dont know how long my left lung will get more damaged sad i was really ill with a chest infection that last 2/3weeks last month it just makes me worry because i know each time i get ill my lung is getting more damaged my doctor says its stress related and its my job too. I work in a nursery with kids so i can see why its my job. I am just annoyed because i am just finishing my nvq level 2 in childcare and now i have to leave my job.

    Please write back

    Jen x

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    • supercough »Guest

      Hello Jen, You don't seem to mention if your are seeing a specialist for your bronchiectasis which in my view is absolutely essential. Most if not all GPs are quite ignorant of bronchiectasis and quite incapable of maning your illness on their own. The fact that your damage is localised in the left lower lobe I am susprised that you have not been offered a lobectomy (removal of the lobe). This can provide a cure if performed correctly. There are a few things you can do to help in the meantime, drink plenty of water throughout the day because this helps to thin down the mucous and do some deep breathing (autogenic) exercises to bring up the troublesome phlegm. You should have been offered physiotherapy for this long ago and if you haven't, speak plainly to your GP. As to your job, think very carefully about giving it up and certainly not before you achieve your qualifications. In all your dealing with the medical profession be courteous but firm, it's your illness and you have to be satisfied that you are being treated appropriately. If at any stage you feel you are being 'stone-walled' or condescended to, speak up.

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  • Tessa

    Hi Jen,

    I can well understand how you feel being diagnosed with this condition at such a young age and in the middle of taking your nvq. A job with kids would probably put you more at risk of catching colds and infections. sad

    I had TB eleven years ago. It went undiagnosed for about 6 months, was in a pretty bad state when I was eventually diagnosed. This left both my lungs very badly scarred and damaged. I have had Bronchiectasis for the past four years, but it was only given a name two years ago.

    But the key thing is to think positively. To keep the lungs as clear of phlegm as possible. Do you have a cough and cough up much phlegm? Drinking lots of water will help there. Exercise but most importantly to get on top of any infection with antibiotics. You can still have a good quality of life Jen.

    You need to ask your doctor or respiratory consultant any questions about the things that are worrying you. The more knowledge you have about it the better able you are to deal with it.

    Tessa smile

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  • Guest

    Hi there,

    Very interesting seeing what you have to say on about Bronchiectasis. I had never heard of this condition until last Thursday (5 April) when I was diagnosed with it. I'm now trying to find out everything I can about it!

    The reason I was so interested in your story Jen is that I am also 20 and so was very very relieved to see that I'm not the only 20-year-old to be diagnosed with this condition!

    I've had an awful cough, runny nose, tiredness etct etc for about 3 months now, I had been to my doctor and had been given a 10 day course of antibiotics which did absolutely nothing and so decided to go to a private hospital and have a complete medical, which included an X-Ray which is when the doctor spotted something abnormal, anyway after a lot of panicing and a CT scan, it's been diagnosed as Bronchiectasis. I'm so incredibly relieved that it has finally been diagnosed and am just really really hoping that the antibiotics work!!

    I can't believe you have had to give up your job though that's just awful. I have actually just applied for a receptionists job in my local hospital so hopefully I will have everything under control if I do get the job!

    Take care,

    Roxy

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  • Guest

    Hello everybody,

    If it's any consolation I've probably had it since I was a child and it was missed by doctor after doctor. Was told in 2002 I had asthma but chest consultant told me last week I probably have Bronchiectasis (sounded like Bronchi Ecstacy when she first said it). I'm still going through the tests, though heard today my chest infection is Staff Aureus, a kind of which causes MRSA!!! I've found the British Lung Foundation and American Lung Association websites very useful - www.lungusa.org and www.britishlungfoundation.org. I'm 49, and have other health problems that have restricted my lifestyle over the years, but like Jen I'm having trouble adjusting. My motto in life has become \&quot;Nil illegitimi carborundum\&quot; which translates as \&quot; Don't let the b@st@@ds grind you down.\&quot; The b word being health problems... Ain't life a pile of poo at times????

    Jo

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  • Guest

    Hi

    There are lots of different things that can cause bronchiectasis; chronic problems with your sinuses, childhood illnesses, recurrent chest infections. Please don't feel that you are on your own with this condition. Bronchiectasis is becoming more common in the younger age group as diagnosis methods improve.

    I work with and treat many patients with bronchiectasis. There are a variety of different ways to help your breathing. One of the most important things you could do is to get your GP or respiratory consultant to refer you to a respiratory physiotherapist. They will be able to teach you exercises and positions to help you get the phlegm off your chest the best way possible. If you decide to look for a private physio make sure they are registered with the health professions council (you can check on-line for free). Unfortunately I'm unable to offer any treatment over the internet but I can give you some general advice and tips.

    The more phlegm you can get off your chest the better you will feel in yourself, I guarantee.

    Yes, you are at a greater risk of developing infections working with children unfortunately but if you can find any alternative health methods to boost your own immunity that would certainly help you out.

    Some people have bronchiectasis isolated to just one part of their lung and it doesn't affect the other parts. So even if it is in the lower part of your left lung is doesn't mean other parts of your lung will develop it.

    When you do have an infection you'll probably need antibiotics for 10-14 days. Drink lots more water aswell and cut down on any sources of caffeine (tea, coffee, coke).

    Some types of bronchiectasis run in families but these are rare so its not unusual that no one else in your family has it.

    I hope that is of some help, good luck with it.

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  • Guest

    Hi There

    I have been interested reading all your queries and advice about Bronchiectasis. I have always wanted to talk to other sufferers so I am thrilled to have found this site. Here is my story.

    I am a 42 year old female and have struggled since birth with chronic bronchitis and chest infections and regular bouts of pneumonia. As a child a spent a vast amount of time in and out of hospitals. When I was 17 they diagnosed evidence of emphysema in my lower left lobe and was only officially diagnosed with bronchiectasis in 1993 at 29. Since then I have had the usual regular bouts of infection and pneumonia, and unfortunately now have got some rather drug resistant infections, which is a pain.

    What I would like to say to any sufferer. Bronchiectasis does not need to curtail your life at all. As a teacher of 20yrs experience I was saddened to hear Jen say that she may give up her nursery nurse training. You have to learn to work with it, but not let it dominate your life. I am still teaching and loving it and have progressed to a senior mangement position in a top school.

    The most crucial thing I learnt was the importance of exercise. It really keeps the lungs working and stops phlegm build up.

    I played county level Hockey and umpired hockey at a National level, until I was 28 and only because I was not keen on the English winter weather, (I came over from South Africa in 1992) . Since then I do at least an hour or 2 of walking every day, go on walking holidays (get a dog. They get you moving!!)

    Yes I do get very tired, and do get irritated doing all the postural drainage, but it is important.

    Also Try sleeping with the foot end of your bed raised up by 10 inches. I did this all through my childhood, and it meant as soon as I woke up I cleared alot of phlegm away.

    But most of all get a good understanding of which antibiotics work for you. Keep a list of those that do and don't.

    Get a number of spare sputum sample bottles from your GP and provide a sample for your GP as soon as you have an infection and BEFORE you take any antibiotics. This will mean that your GP will keep an eye on the bugs you get and you will be given antibiotics specific to kill the bug you have.

    If you have had 2 or 3 sets of antibiotic and they have still not worked get in touch with your consultant.

    Sorry to ramble on.

    Jane

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  • Guest

    Try not to panic . It is not the end of the world I have had Bronchietasis since I was eleven . I am now fiftyseven. Was not diagnosed till in my thirties . It was not nice being known at school as the girl with \&quot; that awfull cough \&quot; . Spent years trying not to cough but now know coughing is the best thing you can do . Learn about posteral drainage and the flutter ball. Get some phsiotherapy. They will teach you how to clear your lungs .

    Your cough will never go but the exercises help. There is no reason why you should not live a perfectly normal life . 8)

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  • Guest

    Hi Jen. Sorry it has made you so miserable. I too was diagnosed in early 20's - that was nearly twenty years ago, and even tho I had almost continual chest infections each winter requiring endless antibiotics I've kept working (in secondary schools with snotty children everywhere) and am now a deputy Head. You might imagine every infection scarring your lungs and making them worse and worse - but mine were fine for years.

    Keep on top of it, take anti-biotics when you need to, try to find an inhaler that works for you (and this takes a bit of trial and error), and there is no reason why you should not live long and happily.

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  • joanna

    Hi all,i must admit i find this whole Bronchiectasis very strange!!!! I was diagnosed two years ago now at which time i had been very poorly-mainly recurrent chest infections which were not treated right so then turned to Pneumonia.This happened every year maybe two or three times if not more for six years.Iwas finally referred to see a specialist(which i had to really fight for!)He then diagnosed Bronchiectasis through having CTscan,i was then put on a drip for four days i think it was Amoxicillin-anyway it was really strong,then sent home to finish the course for another two weeks.Since then i have not coughed or felt poorly at all-i find it hard to believe some days that i have this condition because i feel so great compared with how i used to feel.I know it will never go away but just wanted to let other sufferers know that maybe it is possible to stabilize the condition and also lead a very normal life as i do.However,i do still see my consultant about twice a year just to check on my progress,he is also shocked about how well i am.

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  • Gasa

    Hi Jan thought this might help I had double pneumonia and a collapsed lung when I was two and had a lot of chest trouble as I was growing up.

    When I was 20 I had my second dose of pneumonia and collapsed lung and was finally diagnosed with bronchiectasis with damage to all the lobes of my lungs. At first I was very worried but I was assured that with the right regime I could live a normal life, regular postural drainage, antibiotics and exercise. I took up playing squash and started running and from 20 to 40 every thing was pretty good. After 40 my infections became more frequent and I needed more medication inhalers to open my lungs more and stronger antibiotics, I had to give up my sports activities due to increasing shortness of breath.

    I am now 59 and would like to say I worked for 40 years before giving up due to health problems not just my lung but also developed angina, all though I am now permanently on antibiotics and have do quite allot of postural drainage to clear my lungs, I can honestly say life’s not been bad and I think I have a bit more life left in me yet. Gary

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  • Val Bargery

    Interesting reading others' experienceswith bronchiectasis. I have found postural drainage has improved my coughing much of the time until I get another infection. Just been referred from specialist back to GP but not happy that there seems to be no record of how many infections I have had (I counted 5 in 2009 alone). I do try to send in sputum samples each time and 95 :?: % of time they show infection but not always even though I have nasty 'gungy' phlegm; I know GPs not keen on web information and I do try to avoid upsetting them but not sure anyone can give definite answers. Just thankful I have quite a few good weeks each year!

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  • Guest

    I think that many doctors mistakenly think that, when you show symptoms of bronchiectasis, you have a lung infection which may be cured by antibiotics.

    I first went to a doctor three years ago with a persistent cough, was told I probably had a lung infection, and went through several courses of antibiotics, x-rays, etc. I was put on a nebuliser for a while but it did little good. Then I was shown by a physiotherapist how to breathe in deeply and breathe out quickly and forcefully to dislodge sputum. The physio said that postural drainage is no longer recommended: the breathing exercises are usually more effective - and they were! A \&quot;flutter\&quot; device can also be useful to loosen phlegm.

    But I was still getting the build-up of sputum, which needed coughing up - until I was prescribed azithromycin, which cleared up the sputum almost immediately. I would recommend anyone with bronchiectasis to get their doctor to try them on azithromycin, as it seemed to work a miracle for me - and finally controlled the illness after three years of other not-very-successful treatments.

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  • micklemass

    taking 250mg mucus is reduced cough now and then to relieve the mucus in my lungs not as good as when I first took this azithromycin coloured mucus coming back wonder how long I can stay on this drug

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  • Guest

    I have been very interested in everyones experiences. I was diagnosed with bronchiectasis when I was 3 after having whooping cough at 2 weeks old, it developed into pneumonia. My parents were told I wouldn't last another 6 months, however that was 55 years ago and I am still going strong and at the moment reasonably fit! I can remember as a child doing lots of postural draining and coughing up as much as possible. I was encouraged to exercise as much as I could, and at 6 years old took up ballet. I eventually became a dance teacher and taught for over 30 years. I have consumed huge amounts of antibiotics over the years and had a bout of pneumonia in my 40's but have always managed to get back to the exercise. However in the last 3 years I have had a few injuries - a severely broken leg (sledging) 6 broken ribs (mountain bike) ligaments in both knees (skiing) so exercise has been a problem. In July I had a chest infection that didn't respond to the first lot of antibiotics but fortunately did to the second lot. I also have osteo-arthritis in my neck. I decided then that the exercise would have to start again in earnest (I had become lazy!) So now I jog 4 times a week for 30 mins do a circuit class once a week and walk twice a week. Each time I get home I do my breathing exercises and cough up as much mucus as I can. This seems to be working along with a healthy diet, I've lost a bit of weight and feel much better with more energy. So to sum up, don't let it beat you, you CAN keep going and have a good life, I have 3 children a wonderful husband and so far a great life with which I hope to continue with for many years to come. A great website with very informative forum is BRUS (Bronchiectasis Are Us)

    Good luck to you all

    Huffpuff

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  • Guest

    Hi I also find this condition a little strange! My experience has been very similar to that of Joanna. I am now 45 and was diagnosed 12 months ago having had recurring chest and throat infections since my late teens. These were usually but down to tonsillitis and I eventually had them removed 3 years ago. however the chest infections continued and last year I ended up in hospital with pneumonia. My GP dismissed this as one off but agreed to refer me privately to a chest physician who was the first person to take my 3 or 4 yearly infections seriously. This led to me being diagnosed with mild bronchiectasis. I now have an emergency supply of antibiotics to use when an infection comes on and I am well supported by the Respiratory Specialist Nurse service. The amazing thing is that I have now gone a whole 9 months without a single infection and apart from tiredness I feel really well. I am so sorry to hear you have to leave your job. Is this your own decisions or have others advised that you need too? I have always worked as a professional healthworker and have found my employers more understanding of my occasional sickness absences now I have a diagnosis. Please do not rush into a decision. Kind Regards Victoria

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  • Guest

    Hi Jen,

    Sorry to hear you have bronchiectasis.

    I am 41 this year and found out when i was 13 after years of chest infections and being told i was asthmatic that i actually had bronchiectasis. When i found out i was upset, angry but also pig headed and refused to let this take over my life. I have worked for over 20 years in the catering industry, i go sking, swim and exercise regularly which i believe is the key to keeping healthy as exercising your lungs helps to keep them clear of phlegm thus reducing the chance of infection. If i get an infection i make sure i deal with it straight away using antibiotics and make sure i get the phlegm tested so they now what bugs they are treating. In january of this year the doctors put me on mucodyne which i take daily, this has helped keep my lungs clear and since starting them i haven't had any infections. Draining your chest daily is also important.

    Since being diagnosed i have only been admitted to hospital once due to catching flu.

    kind regards and good luck there's no reason why you shouldn't lead a normal happy life

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