i have Bronchiectasis, which was diagnosed 4to5mths ago

Has anyone with Bronchiectasis been told it an old scarring from when i had T.B when i was 14yrs old, i am now 70 in january, i put on a brave face when i go out, people say you do look well, just because i have a ruddy complection wish i have had for as long as i can remember, my Brother and my Sister are the same, my Brother had T.B but my sister has not, i like to get indoors as soon as possible.

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  • I too have the same as you thatcham,I had pneumonia,collapsed lung and TB when I was a child,Bronchiectasis is also believed to be genetic.My brother and my nephew have it though they have never had TB.All my life Ive suffered chest illnesses,(plurisy,pneumonia,etc.)When I finally retired from work aged 60,(6yrs ago) I was diagnosed with this illness,my GPs just couldnt be bothered to send me for tests.Thank God for progress and the Russells Hall Lung Function Unit.My advice thatcham is keep wrapped up,dont go out in the cold and keep away from people who have colds etc.Good Luck.

  • thankyou fishtail, although my brother had tb at the age of 7, but due to smokng he devoloped empsema, but a brocosopy was done and the damage from the tb was great.most of me piers died of tbm mother, a sister, grand parent 4 aunts, and many more relatives.

    and thankyou for quick reply i appreciate.

    love jan x

  • Your GP should have referred you for further tests and Xrays. I have had two lung function tests at Addenbrookes + x rays. I see my respiratory nurse regularly and am having another lung function next week. I have a spare pack of antibiotics to take when I am away. But I think II dont have it as bad as some. Frequent chest infections especially during pollen season. Pneumonia in the past. If you GP isn't bothered change him/her.

  • answer to fishtails comment

  • thatcham, I have bronchiectasis and asthma, breathing etc has made inactive. I have a buggy and a rollator. I chest conditions as a child. Many active years until about 20 years ago, succumbed to chest infections and pneumonia. On all the usual meds. I keep spare antibiotics. I will go out but do cough, made worse by cold air, talking etc. This website is so good, full of friendly, helpful people. Miss being active but at my age ---- Take care love annie

  • I too have standby meds etc.am just recovering from another exacerbation am on full dose of steroids and awaiting results of sputum sample (should know tomorrow).As for my GP,its very rare I see him,I just phone up for my prescriptions,when Im having problems,I call in the Lung Function Team from the hospital.They are always on standby.My GP doesnt specialise in lung problems,few GPs do,so I shouldnt knock him really.sorry.

  • I was diagnosed just over a year ago after constant chest infections, although I have Asthma and previously diagnosed with COPD (after Spirometry & Reversibility test) my GP was concerned that I had Bronchiectasis as a result of childhood TB and following a CT scan it was confirmed. I also have standby abs & preds and see my consultant 2 a year. Any problems in between I just go and see my GP or practise nurse.

  • Hi Thatcham

    Sorry you have bronchiectasis and have struggled to get a diagnosis. At least you seem to be getting good treatment now. I too have bronchiectasis and asthma. Bronch since aged 5 months old folowing double pneumonia and whooping cough - so like many others don't really know what it's like to have 'normal' lungs.

    I too have always had these 'you look really well' comments, as I believe many of us do!

    fishtail - there are some genetic causes of bronchiectasis i.e. cystic fibrosis: pcd

    Indoors sounds like a good place to be thatcham in this horrid cold weather.

    Love C XXX

  • Hi I'm another bronchiectasis sufferer, was diagnosed about 10 years ago but probably had it years before that. It's as a result of sarcoidoisis that developed into pulmonary fibrosis. Have aspergillus too now. Like the others I have antibiotics at home for exacerbations. Have to e-mail my consultant or phone one of the respiratory specialists when in trouble. Most gp's don't really get it!

  • thankyou for all your kindness, i was on a steroid inhaler, i cannot have steriods by mouth as i am diabtict insulin controlled.

    i have blue tinge above my cuticles on my nails, i knew what it meant but until my doc said it was starvation of oxygen, i found it quite worrying.

    i have a emercency surpliy of anttibiotcs. i am waiting to hear from the physio, i have had to lung function tests and ex-rays and ct scans, but i was so surprised what caused it.

    i did phone the BLF and they were very helpful, i have been given a nunber of a group in hemel hempsted. i feel bettet now i know how many people have the disease and am very grateful for all your support, this is a very supberp site and i am not alone any more.

  • Dear thatcham,

    You are right about this being a great site- not many people have heard of bronchiectasis so it's a relief to be able to swap experiences. I have bronchiectasis and so did my late daughter-very bad in her case and closer to cystic fibrosis - docs say genetic. When last in hospital there were a number of ladies with bronchiectasis who had Tb as children so must be common for the age group maybe and apparently this was particularly widespread in Scotland. Good luck with it all and hope you have a good winter.

  • hi Blue magic

    i am so sorry about your daughter, i told my son who has diabetus it could be genetic i have been trying to get my son to take care of his health, he pneumonia last christmas i took him into hospital he said he would go in the next day, but the doctor who saw said he would not be alive if i had not taken him in, as most men are stubborn i now fighting his weight problem , he tried weight whatchers, but they were not very good.

    when he was signed of from the hospital the only thing he white fluffy bits in his lungs, like the fluffly bits i have,, but with my son they havent looked into it further

  • Hi thatcham,

    That's kind if you, thanks. Well you really have been going through it with your own health and your son's. It must be a great worry for you. It's very hard watching your son/ daughter go through illness.Well done for getting him into hospital. I wonder what the whit fluffy bits in the lungs are- bits of infection or damage maybe. I hope it's not anything serious anyway. I'm waiting fir a call from hospital to go in as my BMI is very low. Shall be having IV antibios and tube feeding, yuck. Dreading it. Best wishes

  • thankyou bluemagic for your email.

    the fluffy bits in my sons lungs thought they might be due to his weight, but who knows, it could be something sereios he does worry, when your children leave home you still worry about them.

    you seem to be going through the mill, i hope it wont be to long before the hospital ring, so thatyou can have the treatment soon.

    good luck i shall be thinking of you,love jan xx

  • Hi jan,

    Thanks for your message. Apologies for late reply. Am in hospital now for tube feeding (yuck!) and antibios IV and loads of tests. Antibios having an effect, really great. Should be out next week.

    As you say, you never stop worrying about your children. They're always about 6 years old in your mind I think.

    Love, patxx

  • hi blue magic, so glad you are having the treatment, you had so badly needed, you may be home when i send this to you.

    good luck letme know when you are discharged and how this are.

    love janxxx

  • Hi jan,

    Many thanks, will do, bit like the madhouse in here, never a dull moment. The feeds are the worst, but the antibiotics worked v well. Have a good weekend

    , pat ( bluemagic ) xx

  • Hi bluemagic.

    I went over to see my son, and there no sign of him slimming down, he ate 5sausage rolls while i was there, but i enjoyed my Grandchildren the youngest being 20mths, i entered my sons madhouse.

    is bronchietasis gentic, only my mother died aged 29yrs, my father ran off but i have been truly blessed by putting a message in the local rag, and i had quite a few results, most were friends of my mother and1 lady had a photo my mother which i treasure to this day i was 48yrs old wheni got,it but most of my family were taken by TB

    i have an appointment with a with a respiratory nurse thr 11th of jan, also further lung function test and more e-rays i thought of taking a campbed with me visting my doc and also many hospital visit

    well Bluemagic, kep breathing and enjoy life as full that you can

    love Jan xxx

  • Hi Jan,

    Great news you're seeing the resp nurse. They are very helpful and know such a lot. Bronchiectasis can be genetic but there are other causes as well- the nurse would be able to tell you more than me. From what I've heard speaking to patients, Tb's a common cause of it.

    What a fantastic response to your advert, I hope you manage to find out more, it 'l be really interesting as well as maybe filling in a few gaps medically. Think the campbed for hospital's an excellent idea. You're getting there little by little.

    Fraid I laughed about your son and the sausage rolls- would love to be able to eat a whole one, let alone 5!!

    All the best,

    Patxx

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