I'm new here and being tested for bronchiectasis

Hello. My name is Samantha. I am 24 years old. I was born premature, 3 months early, weighing 1 pound 11 ounces. Two days after I was born, I developed a pneumothorax, then after that, a month later, intisticial emphysema, then at the age of 14, pleurisy. Since the emphysema, a month after I was born, I have developed recurrent chest infections, and pleurisy. The doctors never listened to me, when I tried asking them for tests for asthma a few years ago. When I went in, with a severe chest infection, and had sats of 93 percent, and was put on a nebuliser, I said to the doctors, I needed an inhaler, but they refused. After that, I tried to get tested again. I had a spiromitory but it was only 20 minutes, so done incorrectly. The results weren't even wrote down properly either. Now, finally, I'm on asthma inhalers, beclametazone and salamol, and am being tested for bronchiectasis. I've had a ct scan, chest X-ray, and have to now have lung function tests. The X-ray showed my lungs to be darker at the top, than the bottom.

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  • Hi Samantha and a very warm welcome to you, although I am so sorry to hear of all your struggles. I have to say though you must be some tough cookie to get through your difficult beginnings. I have had bronchiectasis since the age of 5months old, but even though it was the start of the NHS I was dx by a wonderful paedatrician.

    Stories of misdiagnosis and undiagnosed bronchiectasis sadly happen all too frequently and it seems to me you have been short changed.

    We are where we are and must make sure the clinicians listen to you now and you will have to be your own advocate and get the treatment you deserve.

    You say you have had a ct scan - do you know the results yet. I would just say if you are diagnosed with bronchiectasis there is lots of advice people can give you on here. Firstly, if dx you need to make sure the respiratory consultant you see has a special interest in cf/bronchiectasis (believe me it makes a difference). You can check out your own consultant online or let us know of a city you can access and we might be able to help you.

    If dx with bronchiectasis (BE) then your consultant shoud refer you to a respiratory physio who will show you different lung clearance techniques and PEP gadgets and when you find one that suits you will have to do this at home yourself every day.

    You would normally have a sweat test to eliminate cf.

    We shouldn't get too far ahead of ourselves until you have a definitive diagnosis. Please let us know how you get on and if there is anything specific you want to know. There will be folks only too willing to support you in any way they can.

    Hope you have a good Christmas and better health in the coming year and beyond.

    love cx

  • I've recently been diagnosed with mild bronchietesis and the respiratory specialist said I would be referred to a lung physio.

  • I've just had this diagnosis it is for me mild, but have to see Consulant in the new year. Was found after nuerous infections and by CT scan and lung function tests.

  • I don't know the results yet. I am waiting for them, and i've got to have lung function tests. I don't know but my specialist is in Preston, Dr Haydar. At the royal preston in the chest clinic.

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