Bronchiectasis

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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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  • Posted

    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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  • Posted

    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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    • Posted

      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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    • Posted

      Hi

      I have also just been diagnosed with bronchiectasis last two weeks. I cried for a week when I found out. I had a cough for a while and  did not do anything about it. I  had not had any infections apart from when i was 24 and had pneumonia.

      I also work with special needs children and have been advised to leave my job, i was devastated. I think what the doctor is saying is that we work with children and their immune systems are not fully developed yet so they are prone to infections colds etc and we are then likely to get infections .

       I have bronchiectasis mild and have been told as long as I manage it well it will not progress. Exercise is a good thing and drinking lots of water. Donna

       

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    • Posted

      Hi Donna,

      Yes, you can live a normal life. Exercise is important, walking, swimming is very good for the condition.

      I would drink juice rather than water. Too much water and you can dehydrate.

      Just make sure you get antibiotics when you have a flare up. Also your doctor may give you an inhaler. I use one every few days.

      Don't worry you can live a normal life with mild bronchiecstasies. Good luck. You will always find people here to give good advice.

      Also, because you a young I suspect in a few years they will have a cure using stem cells. Trials are already ongoing.

      Ron.

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    • Posted

      Hi 

      I have just read your post and I'm sorry to hear your news. 

      I am a chronic lung sufferer and have been all my life. I'm 29 and have had so many chest infections I couldn't begin to count. 

      Iv had pneumonia twice in last three year, plurisey, exerbation of asthma. I have recently been admitted to a&e locally and was sent to the respiratory wards. Usual bloods, x rays, arterial gas checks. I was diagnosed with plurisey yet again on Monday morning. I'm now on antibiotics, clarithyam and prednisone. They have said antibiotics alone will not fight the infection. They have also said my lungs have changed since my last x ray 15 months ago when I had pnuemonia. Which is why I have been sent for a CT scan this morning only 36 hours after I was discharged. Plus more in depth blood checks. I was checked for clots at weekend which come back negative. 

      Could I ask, on your way to being diagnosed, did you have all these checks done in a short space of time? 

      Look forward to hearing from you. 

      Cheers

      Phil

      liverpool UK

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    • Posted

      Follow your doctors advice....

      Take what ever medications they prescribe.

      Try to do some exercises.....walking, swimming, etc.

      Eat healthy and nutritious food.

      You will have flare ups.......

      But otherwise, you will be able to leave a normal life.

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    • Posted

      Hello to all who are here.  My name is Donna, I have lived with Bronchiectasis for the past 50 years of my live.  I was diagnosed when I was just 7 years old,  I've had 2 major surgeries to remove portions of lung on both sides(done when I was 7 and 8 years old).

      I was followed very closely at the childrens hospital until I was almost 21.  Thats when i married my highschool sweetheart and had 3 children, whom are now grown...we have 9 grandchildren now.

      Through the years i have suffered many pnuemonias and infections, my lungs have suffered greatly.  I have been tested for CF, and now know that I have CFTR-related disorder.  I use 2 inhalation antibiotics(toby and cayston), saline, provental and advair.  I use the acupella and whats known as the "Smartvest"  to help in coughing to remove the mucus.  Now i am also on O2 constantly.

      While younger I raised my family, worked outside the home and was active with the childerns sports and activities.  But the Bronchiectasis has become more severe so that I am now trying to get on the transplant list...I start the evaluation testing soon.

      I wish only that you all listen to your doctors take your medicine but know that your life can and will carry on.  I know that there are some who are worst off...but there is always hope, stay positives my friends!

      Thanks for listening

      Donna

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    • Posted

      Hi Donna

      What an amazing lady you are. You are just what this forum needs. Positivity & hope. Like you say there are some worse off than others but you are an inspiration to us all.

      I've had bronchiectasis practically all my life I'm now 48. I have 3 children & 2 grandchildren with another one onight the way. I live life to the max when I'm well & embrace everything, I know It's tough some days when your battling the elements & trying to fight infections etc bit I always try and think there's some one out there worse off than me.

      Stay well lovely lady.

      Rach xx

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    • Posted

      Hello Violet. I have ben diagnosed for a few years now with bronchiectasis. I regularly search the internet for research ideas, and trials. There is a stem cell research project on at the ,moment. log onto clinical trials com. I hope this will help us : fingers crosed!

       

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  • Posted

    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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  • Posted

    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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  • Posted

    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 \"Nil illegitimi carborundum\" which translates as \" Don't let the b@st@@ds grind you down.\" The b word being health problems... Ain't life a pile of poo at times????

    Jo

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