Bronchiectasis

Hi my daughter who is 20 has been diagnosed with Bronchiectasis and we are struggling to get information, she had her ct scan in november 15 and lost of blood tests and lung function tests the letter from her consultant stated that her tubes where wider than normal and this would explain the symptoms... constant cough , chest infections etc, no mention of Bronchiectasis, however or GP has said that it is bronchiectasis. Our problem is that we have not seen the consultant again to ask questions about the condition and I rang this morning and was told that she was due to be seen march/april 16 but they were behind and didn't know when she would be seen. I am trying to get travel insurance and one of the questions is have you ever been diagnosed with copd and I cannot answer as I do not know if Bronchiectasis comes under this umbrella. Also her sputum samples are coming back with bacteria showing but we are told not to treat it with antibiotics unless she has symptoms. Since last September she has only had one clear sputum test!

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  • Hi

    May help with a better understanding, and the kind of questions you may want to ask.

    bronchiectasishelp.org.uk./...

  • Stone Thank you I had never seen this site before, found it very helpful

  • Thank you ... This is a great help

  • Bronchiectasis is not copd but as been known as lady windermere syndrome

  • Bronchiectasis no longer comes under COPD. you will probably find that your travel insurance will be loaded a little because of the Bronchiectasis - on a yearly insurance mine went up by £20 for the Bronchiectasis. Look on the BLF website to get information on Bronchiectasis it is the best place to go to. Your daughter may need to see a physio for mucus clearing exercises. I do the active cycle of breathing which I find helpful. Some people find that steam helps too. Are sure you get back to see your consultant. Keep chasing the appointment up, Another tip is to ask the consultant to send copies of any letters to you. You will be amazed at how any go missing and it means you will get the information straight away and can then make an appointment either with your consultant or your GP to discuss things.

    Good Luck.

    Other than doing the mucus clearance exercises Bronchiectasis has not really changed my life at all.

  • medical travel compared is a site from I have just found from the martin lewis website. just put in bronchiectasis as a medical condition. this is by far the best site I have come across. I listed rheumatoid arthritis, rheumatoid lung disease, bronchiectasis and high blood pressure and got a quote of just 16 POUNDS for a week in Santorini, couldn't believe it. never had it that good before. :-) janx

  • Thanks everyone ... it's a learning curve!

  • I have bronchiectasis and have just purchased travel insurance - they added a small amount, but it was still very affordable. (And I'm 69!) It's not COPD. Keep pushing for the consultant appointment - they will be able to explain everything and hopefully refer your daughter for respiratory physiotherapy, which will help with clearing the mucus. If they don't offer that - ask for it! Good luck - hope your daughter gets the treatment she needs, and stays well.

  • I have had confirmed bronchiectasis for 4/5 years now but probably had it since childhood (I'm 67 now). If your sputum shows bacteria then it should be treated as, as my consultant said it could be bubbling away and getting worse. I don't very often get symptoms when I have an infection and have to go with how I feel rather than temperature, signs of fever etc.

    It would be worth a visit to your daughter doctors so that they can check it out.

    It can take a awhile to understand what bronch symptoms are individual to your daughter and whether action needs to taken. For me it was about 9 months from first being referred to the hospital and getting a proper diagnosis, your daughter will get there and although it is a nasty disease many of us on the HU have it but still live an active life, if a bit wheezy.

    Cheers,

    Sue

  • As you gp says its a widening of the airways so the tiny hairs can not move the mucus and its important she learns how to move this herself with breathing technique and you can help with the video ive put on here also staying away form smokers and anything else that would irritate her lungs .....The gp can refer her to pulmonary rehab which is a course that can show her how to take care of herself

  • Thank you all so much for your replies! It's great to get some advice from people who actually know what it's like living with this condition! We have a lot to learn but we'll get there :) Thanks again everyone

  • This does come under the COPD umbrella. Good luck to your daughter - tell her there is a lot of help out there. :)

  • Hi Maisie

    A very warm welcome. I am so sorry I missed your post for some reason.

    I am glad you found us but sorry your dear Daughter has bronchiectasis.

    I have had BE since I was a baby following pneumonia and whooping cough at the start of the NHS - so I'm getting ona bit now.

    I don't now about the insurance side but you have had good adice so far.

    Re the Bronchiectasis. Bronchitis and emphasema come under the umbrella of COPD, bronchiectasis does not. I believe it used to and I still have battles with some GPs (as all bronchs do) who still think it is. I also believe it is sometimes the case in some countries, but it is a separate conditon.

    I hope your daughter is seeing a respiratory consultant who has a special interest in cf/bronchiectasis - check her out online. Once diagnosed following a ct scan your consulant would normally refer your daughter to a respiratory physiotherapist, who will teach your daughter mucus clearance techniques and show her gadgets to help and she can see what works best for her.

    I would expect them to also refer her to an immunologist and for a cf sweat test.

    These are things you may want to ask cons about if she is not forthcoming at your next consultation.

    This is in my opinion and the opinion of many bronchs I know for inforamaion at this present time. It is going to be updated and the European Respiratory Society will be launching lots of stuff later this year, but for now I hope this helps

    chss.org.uk/documents/2013/...

    Another very reputable site is Bronchiectasis R Us. I am a member but not with the same username.

    Good luck.

    cx

  • ps: You have to learn to be your own advocate with bronchiectasis, although there is a renewed interest in it's profile and funding (long overdue) and I have high hopes treatments will change over your Daughter's lifetime.

    BTW your GP is wrong. If your daughter has cultured (Grown) a bug then it should be treated with whater the bacteria is sensitive to (antibiotic shown on the slide in the lab to be effective at killing the bug). They are, quite rightly, getting very concerned about giving antibiotics to the normally fit and well but people with bronchiectasis cannot afford to take chances on there lungs deteriorating. You might want to speak to your consultant about that too.

    cx

  • Thanks cofdrop-uk ...it certainly is a learning curve. She has seen a respiratory consultant and had the sweat test and seen physio once! Now got a new consultant don't think he specialises in bronchiectasis. Her last appoint with him he stopped her slo-phyllin that she wss on for asthma. She takes flutiform inhaler that she has been on a few years again for asthma. I suspect that she has had bronchiectasis for a lot longer ... she coughed constantly from a baby and had quite a few lung infectections as a baby. She has it in both lungs..left one lobe has it and right lung has it in two lobes. I worry as it is hard to make a 22 year old understand the importance of daily physio..she tends not to do it if she is well! Thankfully after an awful 18 months of constant antibiotics and trying to get the drs to listen to us, she seems to have settled a bit..long may it continue.

  • There is a new lady with a young son who has just posted and it may be helpful for you to chat with each other.

    Love cx

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