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My bronchiectas was caused by "so I am told" mease

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My bronchiectas was caused by "so I am told" measels when I was 3yrs old (1948). I have been a life long bronchitis sufferer a cougher,sniffer,suffered black outs,collapsed lungs,coughed blood and alaways fatigued. All of which worsens during the regular colds and almost dying during belts of flu. Coughing worsens when I go into a cold bedroom and when I lie down to sleep, more so on the opposite side to the more infected lung because it has more muck to drain. Coughing fits produce 60 - 100ml green stuff on bad days 30 - 40 is average. keeping me awake most nights.

This has been life over 58 years so far. I currently have the condition in most of the right and half the left lung and have been advised to have several lobes removed. You can imagine I have tried all of the antibiotics,salt pipes and physio including hanging upside down and clopping my back like a bottle of sauce.

I have found the following works for me:

1. warm dry sunny weather.

2. walks in the woods and by the sea stopping here and there to rest and use the flutter ball pipe.

3. keep bedroom warm but crack the window for a bit of fresh air.

4. lie flat for about 30mins on both sides before going to bed, this helps to reduce the amount of muck left that causes the night coughing.

5. I use a nebuliser twice a day.

6. I keep a flowmeter chart showing my readings when I get up and at the end of each day.

7. use a sputum collection tube to collect all sputum coughed up day and night, enter the amount collected on to the flowmeter chart and enter your activity for that day. This is valuable information when talking to a specialist and has helped me to provide this information to you and I Hope you find it usefull.

Has anyone experienced a hotter dryer climate and or had an operation to remove of a couple of lobes? I would appreciate any comments.:?

[i:4a5c10170f]This message was automatically imported from the original Patient Experience[/i:4a5c10170f]

0 likes, 8 replies

8 Replies

  • eileen39770
    eileen39770

    Posted

    Hi my name is eileen would be intrested to know if you had pinks disease I had it when I was a baby I have broncietasis I am 62 why I asked is it associated with this disease also rhumatic fever measles pnumonia whooping cough have anyone said how you got it PINKS DISEASE is never taked about or acknowledged by Dr's there is a web site for it it's from murcury in the teething powders and was in the national dried milk everything I have read on it I associated with my self would be intrested in your reply or anyone else out there
  • Outhwaite
    Outhwaite

    Posted

    Hi I've never heard of Pinks Disease being connected with bronchiectas
  • eileen39770
    eileen39770

    Posted

    Hello recieved your message and icon dont know how but maybe getting there
  • supercough
    supercough

    Posted

    My bronchiectasis began with a severe case of measles followed by pneumonia over 59 years ago. I had a left/lower lobectomy but it did no good whatsoever. Lobectomies are seldom done nowadays.
  • Operalyn
    Operalyn

    Posted

    I agree - a friend of mine had a lobectomy and it never made any difference. They were going to give me one at one time but my bronchiectasis (measles-caused, too) is too scattered in my lungs to make it possible.

    I consider myself very lucky in that my symptoms don't seem as bad as many of you. I am full of gunk of course, but I have lived with that for over 60 years.

    I never hear anybody mention postural drainage these days? Does nobody do it any more? I do nearly every day and if I am bad every day twice a day. It helps me more than any single thing. If you are free of the gunk then everything else is so much better.

  • supercough
    supercough

    Posted

    In times past I had regular physio and postural drainage but to be honest, it has never really been much use. Nowadays there are many methods of clearing the airways such as the flutter device, mucolytics and autogenic breathing. In the past I have had occasional flexible bronchoscopies which were used to flush out all the gunk but there are only so many times these things can be used before damage occurs to the trachea. Unfortunately, my six rigid bronchoscopies and dozens of flexible ones have left me with a damaged trachea and a condition known as tracheobronchomalacia for which there is very little treatment available other then surgery which in my case would not be appropriate.

    The bottom line is that bronchiectasis is one of those things that simply cannot be effectively controlled long term and we have to grin and bear it. A specialist ho is fully up to speed on the disorder is essential, there are so many fools out there who throw truckloads of antibiotics at you without a thought of the long term effects. If you find your specialist is not taking you seriously enough, dump him or her but make sure you let them know why.

    I have just begun a new treatment with Colobreathe (Colistimethate) which up to now has only been licenced for CF sufferers. I am hopeful that they might help me with perhaps none of the major side-effects. Sadly up to now bronchiectasis has been seen as an 'orphan' disease but statistics are beginning to show that it is much more prevalent than was thought. Perhaps this will result in more research and the possibility of cure. Don't hold your breath (oops!)

  • Operalyn
    Operalyn

    Posted

    I don't know about any of these exciting developments - I just do my physio - by myself as taught by the Brompton years ago and I find it works fine. Sometimes it is a bit slow and tiring but mostly it's a short time on the bed, breathing properly and clearing my lungs. I can even feel which bits are still congested after years of experience. I don't get truckloads of antibiotics thrown at me - I mainly grow pseudomonas and this is tricky for a lot of anti-bs. I usually clear my chest for a couple of days before I resort to antibiotics and often it clears away OK. Not always of course. I have been so much better since I have been on Singulair - it is for asthma and my specialist has always said that I am probably part asthmatic - certainly I suffer from masses of allergies and I suppose that is why the Singulair makes me feel so well.

    Am now googling flutters because I have never heard of them.

    I haven't had a bronchoscopy since childhood so luckily have not sustained any damage to my trachea - it sounds awful and you have my sympathy.

    As you say, when you suffer from bronchiectasis you just have to keep on keeping on - but it is much harder for some than others.

  • eileen39770
    eileen39770

    Posted

    Hi everyone I have had bronch since childhood I do drain and do physio when chest getting clogged am on prophylactic antibiotics for abou 15 16 years now have regular check ups with my consutant I think each of learn to cope in our own way there doesnt seem to be the help that we had when we where young I'm 62I had breathing classes and extensive physio now a lot of people seem to be miss diagnosed or Dr's don't seem to take it very serously I'm one of the lucky ones I have had such brilliant Dr's and consultants over the yearsstay well everyone xx
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