how, why, when?

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I can't understand how I could have sustained such terrible damage to my lungs sometime in my life without even knowing about it?

How can it be that it went undiagnosed all these years, no symptoms, gets found on a CT scan of the pancreas by chance, and then I immediately start getting symptoms when I'm 72? Just coincidence??

Nothing makes sense.

Sorry, morning rant, I wake up angry and scared and alone and just want answers!

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14 Replies

  • Posted

    It's a bit of a mystery is bronchiectasis especially as it sort of vanished from public consciousness for a couple of decades. It was sadly much more common in the 50s and 60s when I was diagnosed. Whooping cough and measles were often the culprit and when the vaccine arrived for both of them this prevented the lung damage that the wretched diseases left behind. I knew someone who had it from swallowing a baby tooth and it going to her lungs rather than her stomach! It's a bit of a mystery but something will have caused the damage which may not have troubled you until recently. No idea in other words! However you are making yourself unhappy trying to work out why - and you may never find the answer. Concentrate on keeping the ##$$**** thing under control!

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    • Posted

      Yes it’s a mystery.    Two years ago go a cough.   Never sick. Very active.   Now I have some much phelgm.     Doctor keeps sending me for ct scans  every six months        Here is the states doctors don’t know to much
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  • Posted

    Good Morning Sue, Well We are both the same age and have had much the same experiences, although mine differs in that I have a bit of an idea why I've ended up with broncs.

    Mostly, as I understand it the damage is done via our lifestyle, where we live and in what conditions, also attributed sometimes to childhood illness, or adult acid reflux probes. Even black mould in your house if it exists can cause it as can dust, chemical inhalation, and any other tissue damaging toxic material. In my case, Building construction related dust and chemicals, including Asbestos. The disease manifests itself as wheezing, mucous retention, coughing and infection pain usually controlled by antibiotics and in my case lots of exercise.

    After 8 years of it I have the better of it, and lead a normal life with caution. Infections are infrequent because of the flu jab and care not to over expose myself to carriers.

    Often the cause of this disease is indeterminate. Because unless you have a specific memorable event its kinda difficult to pin it down. Suffice it to say, I hope you manage it well and your suffering is minimal, kind regards

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  • Posted

    Hi

    I had no symptoms until I was in my late 30s..I was training to do the London marathon when I got chest problems. I did actually get to run in my first marathon last year which I am over the moon about.I just find it so difficult that when I am well I feel fit and healthy and can run and now after an infection and being in hospital I can't even walk up the stairs without getting out of breath!!

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  • Posted

    Hiya Sue,

    So look who knows how this all stated for all of us,but for me same thing 68 years old wake up with all this coughing get Ct same thing,now that you are done being angry,don't be scared as we all where,now just deal with it I'm 73 now and have been on Azithromycin every 3 days changed everything for me so ask your GP you will get better and everyone on this Forum will help you in there own way as to how they are dealing with this stuff.

    So stay well,

    Best,

    Charlie

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  • Posted

    Good morning Sue

    You and I are in the same frame of mind.

    What the he’ll have I done to deserve this?

    No chest infection that I can think of, measles as a child in the 1950  yes,

     but didn’t all children have it?

    No whooping cough that I recall.

    I was fit and into athletics , swimming etc. big time!  But had a fair bit of tonsillitis 

    In later life, a couple of sinusitis bouts  but nothing so bad to cause this I feel.

    Acid reflux that has been controlled for years by Omeprazole so ........ what?

    Just a chronic cough for 8 months recently but why....... what brought it on?

    Idiopathic it may be to the medical world, but it bothers the hell out of me😡😡😡 grrr! hiss😩😩

    I know we have to get on and live with it as others have said this morning.

    But I’m not one to take things lying down and would like some answers

    I’m 67 and very grumpy today and I reckon I will continue to be so you are  in good company Sue

    We’ll be BX widows together shall we ?

    With good wishes to from your “pal” Judy

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    • Posted

      I have got tons of sympathy for you and Sue and I have said "why me?" a million times when I missed all the school Christmas parties and Nativity plays cos I was ill every winter. And when I started going out with boys - worried I would cough or my nose would run in the back row at the pictures. And all the times I was called into the boss because I was off sick again and was warned "we know it's not your fault but you really must try to improve your attendance". And on my wedding day - worried about coughing during the service (I didn't). It's not easy having bronchiectasis - it's a real bummer in fact. However I don't see that knowing why will make any difference. It won't go away - it can be helped by meds and physio, you can help yourself and live a reasonable life but it's incurable. Well it is at the moment who knows what miracles the future may bring. Having been horribly bracing I would say I have had very low times and depression. The reason I am childless is because at the time I would have been trying to conceive I had a really rough few years and was recommended not to. That time of my life was awful. I hope when the spring comes we'll all feel better.

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    • Posted

      Yes you are quite right I know Operalyn.

      But it’s the frustration at not knowing😢

      Having said that I was really struck by what you say about not having children

      It must have been really tough to be told that if you wanted a child.

      I put of having a child until I was 37, for reasons that it is not appropriate to talk about here..

      When I finally did decicide it was really difficult and then I had a miscarriage.

      Two years later my daughter was conceived and when she was born she was the best thing that ever happened to me. So I wanted more but no more were to be had. I felt I was being paid back for not wanting any in the first place. Punished , I suppose is a better word

      My experience cannot be compared to yours and my heart goes out to you.

      Hope you don’t mind my comments but I really felt moved by what you said.

      X

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    • Posted

      Here is a good line from so many shows, even if trite:

      I didn't ask "Why me?" when all the good things came my way, so how can I have the sheer effrontery to moan "Why me???" when something bad comes along?

      Everyone on earth gets entirely too much bad stuff -- well, except the current Fake President of my country, IMHO. Nobody deserves it. Why create this frustration for yourself? The rest of us here did not lie down & let this walk all over us. It happens. Do your best going forward. If you must expend energy devising a time machine & go back and analyze every second of your life. Tell us when you're done.

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    • Posted

      OMG....I could have written that myself Operalyn 😢, I am almost in tears replying to you. I also had a terrible time at school. I actually got into trouble for "coughing" was told by one of my teachers to stop my irritating cough !!!! They wouldn't let me go out to toilet so i could clear my lungs. Thank goodness things have changed for the younger generation now.

      I also was terrified I would have a coughing fit during my wedding ceremony ha. My marriage didn't last long because he couldn't cope with me being ill so much.

      You are the first person I've chatted to who has gone through the same thing. Oh I wish we lived near each other and could meet for a coffee ?

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    • Posted

      It's a tough thing bronchiectasis - and the fact that hardly anyone seems to have heard of it doesn't help. Still, it was my 70th birthday yesterday and I have come a long way for a little girl whose parents were told I'd be lucky to see 21. And the longer you have it the better you cope I think.

      Sorry your marriage didn't last. I was lucky to marry a one in a million man.

      Hope all is well with you and I'm sorry I made you cry! L x

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  • Posted

    Hi Sue...

    It seems to be one of those conditions that just appear from where we no not until we hear all the pointers in the past.

    I didn't realise that having whooping cough aged 4 and pneumonia aged 13 were factors. I was also a very wheezy child...nobody called it asthma in the 1950s... so many bouts of bronchitis. I had my first steroids at 19yrs old. I lived in the same house, same conditions as my siblings...they all went on to be smokers but not me...so why am I the one with bx? 

    I've just come through a long haul of being poorly for 3 months...so debilitating. It's hard for me to take all this in. I get really poorly by starting off with tight breathing and whatever I've got goes straight to the lungs. No cough or cold... I don't cough phlegm but my lungs are full of crackles and this time I had pleurisy too. 

    We all so need the Spring time to come and better weather.     

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  • Posted

    Hi  Sue, even though it took 16 years for mine to be diagnosed ,I do know when I contracted mine, I worked in a small shop making loose covers the owner was at the back of my chair ripping old furniture to bits for upholstery, and the dust fibers old glue ect all falling in the air and on me , and it was at this time that I started with the cough that they thought was asthma,. i did keep saying it was not ,I don't know if this will help you to think back on your life and put a finer on something.

             take care. Pam

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  • Posted

    Love and sympathy to you sue73.

    What do you mean, you immediately started getting symptoms? Do you mean that they symptoms appeared after you were diagnosed? If yes, could it be psychosomatic? I ask because I have just been diagnosed with mild bx.

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