Getting a diagnosis of Bronchiectasis

My name is Ken, I am 69 and have had chest problems since early childhood.

Last year I was finally told that I had COOD by a radiologist, then when I saw a consultant I was told that I actually had Bronchiectasis

This certainly explains all of my recurring chest infections over the years.

I have days when it's very hard to do anything due to fatigue

But I am determined to remain as active as possible in the hope that it helps me to remain fairly fit.

These days I cannot do anything in the gym or go swimming, because I have lost a lot of coordination due to brain problems similar to Parkinson's

But it's a case of trying to take each day as it comes and getting the best I can out if each day.

14 Replies

oldestnewest
  • Have you been referred to a physio for breathing exercises to help bring up mucous? Really helpful for clearing your lungs and keeping the Bronchiectasis as mild as you can. Have they told you where the Bronchiectasis is is it mild or what? I was diagnosed 5 years ago but due to an admin mistake never got referred for physio though I have now and it is brilliant have breathing exercises to do and it has made a huge difference.

  • I have not seen a physio yet, I am still waiting

    I have had this for years but it was only really taken seriously in the last 18 months when we got a new doctor at our practice

  • Just as well you got to see a new doc then!

  • Well don, Ken. You have a package of problems but a brilliant attitude. This is a brilliant forum and you will get al to of help, advised and support there.

    All eh best

    K xxx

  • Welcome Ken, great to meet you. I have bronchiectasis too (asthma & bronchitis since childhood) but coping with Parkinson's as well must be very difficult. Keeping active is essential, and taking each day as it comes as you say. I echo freefaller in the value of chest physio, it really helps to get as much stuff off the lungs as possible. Takes some effort but is much less tiring than constant coughing, helps breathing, and most importantly wards off infection. I hope you've had a referral already, but if not ask your consultant or GP. As you haven't been diagnosed very long, you might find this booklet useful chss.org.uk/documents/2013/...

    If there are any aspects of bronch you want to ask about, please let us know, as there are members here who have lots of experience.

  • That's a brilliant booklet. I must try to get that downloaded or printed off later. It explains quite a lot about the illness.

    Trying to cope with extra medical problems is a head ache at times, but I just try my best to remain focused and getting through each day.

  • Many Thanks for the Link.

  • My father in law was told he might have this. He will be going through more testing. I'm new to this community though not new to Healthunlocked. Thank you for the link! Great information. We're not familiar with this disease.

  • Hi Ken, I too have bronchiectasis. However, I take Azithromycin and have stayed well for 2 years. I am sorry you cannot swim but try aqua. You stand in the water and exercise, you only do what you can. Take care Maximonkey.

  • Good morning, Ken!

    I have Asthma, COPD and suspected Bronchiectasis with all the recurrent chest infections that seem to go with it, so I have some understanding of what you've been through. Re the Parkinsons, that's an 'extra' I am pleased to say I don't have. My brother had Lewy Body disease, which presents with Parkinson's -like symptoms, so I know how limiting it can be, but also, how much can be overcome or improved by keeping up a positive attitude to life.

    I don't know if it would help you in any way, but we had a talk at our WI from a man with quite severe Parkinsons, on behalf of the Parkinson's society. He spoke of quite a lot of helpful aids, including a walking stick that projects a light beam for someone to step over when their legs freeze. You may already know about this, but I didn't and neither did my brother. This man told us that many people with Parkinsons find that if they have something to step over, their legs will 'unfreeze' - hence you step over the light beam which you trigger yourself from the stick handle. He said there are many little gadgets out there to help (too late for my brother unfortunately) so if you haven't been in touch with the Parkinsons Society, it might be worth your while to see what they can offer.

    Back to the chest issues, though, I'm finding I have times when the air seems so dry it is almost powdery! It is much worse indoors than out and I was thinking it might be to do with dust in the curtains or carpets, but I've now experienced it in other places, including out doors, so I think it must just be something in me.

    Is this something you can relate to?

    i'm fairly new to all this myself as I spent last year with a diagnosis of asthma and COPD and only recently have I seen a consultant who is pretty sure I have Bronchiectasis. I have a CT scan on August 1st which should confirm it or otherwise. I've now accepted it as the diagnosis so if the results are 'otherwise' I will have to 'rethink my thinking' yet again!

    I said to my husband just now, 'When I finally get all my medical appointments and treatments out of the way, what on earth are we going to do with all our spare time?

    He gave a non-committal grunt and went back to look at Austin 7s on his ipad. I'm not sure he can see a time when we will be free of the medics, but you have to keep positive, as you yourself are finding.

    Good luck to you - hope to hear from you again.

    Moy

  • Thankyou I know that Brochiectasis is bad enough on its own, but I manage to cope, just.

    If it had not have been for a new practice doctor who also works part time in a general hospital I dread to think where I would be now.

    After my second set of antibiotics within 8 weeks, he went back through my notes and found that I had been showing the same bugs in my sputum tests over the last 8 or so years. All Haemophilis influenza bugs.

    After that he changed everything to suite me. He even got the loan of a nebuliser to help clear some of the gunk from my lungs each morning.

    We have now bought our own for home and I have a small portable mucus removal devise for holidays etc.

    I admit to getting distressed at times, because I can no longer walk the distances I was used to doing, but I guess that that's part of life's changes.

    Between the Parkinson's, my osteoarthritis in my hip and foot, and the Bronchiectasis I feel like a walking wreck at times.

    My daughter makes light if it by saying that she will book me in for a service or complete overhaul. She means well by this and is only trying to keep me laughing at life.

    I only stay fit by walking these days because I have lost my coordination in other things like swimming or the gym.

  • I was recently given roxithromycin by my pulmonary nurse. She said it would help to protect against any "greeblies" I might catch from my grandchildren of when I go out shopping. It is a form of antibiotic. I always check on the net whenever I am given anything new so I looked and found this site ::-http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2629987/

    Apparently roxithromycin is a macrolide and is being tested for numerous chest complaints. It is quite a long article, but one I think well worth reading. It also covers the use of macrolide in the treatment of Bronchiectasis.

  • I have not heard about that. The pulmonary nurse did suggest a new inhaler the last time I saw her. But the doctor did not take it in board.

    I am seeing her again in two weeks, so we will see what happens then

  • It's taken me a while to realise we have to push for things - they don't necessarily happen, even when something's been suggested. My respiratory nurse wrote two letters to my GP. Luckily, as I was copied in to them, I knew what she had requested on my behalf. As nothing came forth from my GP, I followed it up and it got done. The same thing happened when I had a copy of a letter from my consultant requesting I be prescribed something. Nothing happened so I phoned. 'Oh,' said the person on the phone, 'It's marked here as read.' 'Ah,' I said, 'but does that mean he has left a prescription for me?' The answer was 'No' but she then said she would flag it up again to the GP and, lo and behold, I got my prescription (which, I may say, has been really worth nudging him for).

    I was brought up in a world where 'Doctor knows best' and you wait politely in turn for your treatment to eventually be decided upon. Well, the world has changed, and I've discovered that if you are not proactive now, nothing happens.

    I once worked for a head teacher whose desk was always a heap of unsorted paper. I asked him how on earth he knew what to go to next and his answer was, 'Whatever is important will rise to the top when some one shouts loud enough!' There are many others using the same system, I fear.

You may also like...