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I have bronchiectasis and was diagnosed approx. 35 years ago.

Posted , 12 users are following.

stellaclark
stellaclark

When I went to the Chest Clinic some weeks ago I had a routine chest x-ray.

It came back showing some white spots on my lungs. 

I was then sent for a CT scan, and worried whilst waiting for the results.

The Radiologists findings were, that a round new abnormality was found in my left lung. He thinks this is most likely an area of bronchiectasis filled with mucus.

I have to go back to the clinic in six weeks for another x-ray.

I would be interested to hear from anyone who has experienced anything similar.

 

0 likes, 67 replies

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  • sdawoolsey
    sdawoolsey stellaclark

    Posted

    Hi there,

    I have had bronchiectasis since infancy, fun stuff isn't it

    I have a severe case of this obstructive lung disease, I am sick every 3 months & I am in line for organ transplantation

    My strong advice to anyone is to maintain a daily exercise regime. Everyoe tends to say "I am too busy" but its as simple as a half hour walk daily

    I commenced this someime ago, I basically get off a train station 2 km from home & I Iwak home after work

    My sleep patterns have improved, my breathing is more relaxed & has improved & I follow my specialists instructions to the core

    I have my bad days & my disease changes constantly

    My advice to you is not to worry, exercise daily, live life & stay positve. This has a remarkable bearing on your quality of life

    Mucus / white spots on the lungs? Ah that's normal, we just have to make the best of the card our life was dealt

    Look for some positives, it all sounds so bad but you can find sommeone who is worse off than you & you can realise quickly just how lucky we are

    I do hope your health improves .... ultimately what can you do?

    Exercise, stay positve, do what you're told & be happy

    Not sure if this helps you but I hope it does

    PS.I am now 49 years old, I was told I would be dead by 40. But I DO NOT THINK SO!

     

    • stellaclark
      stellaclark sdawoolsey

      Posted

      Thank you for your reply and words of comfort.

      It was a worrying time, having white spots was a new one for me.

      If I had written sooner and got your reply I would not have worried so much. The Doctor mentioned that white spots can be a sign of many things, some more serious than others. 

      The results were the best I could have got.

      Thanks again.

       

    • sdawoolsey
      sdawoolsey stellaclark

      Posted

      Hi again Stella,

      I have permanent white spots, I have been told the biggest concern would be infections constantly. A good sign is reduced infections & exercise, as we've mentioned before.

      I don't tend to worry about white spots, they are always on my x-rays every time I have one.

      Good luck, keep us posted how you go.

    • supercough
      supercough sdawoolsey

      Posted

      I'm astonished to learn that someone with severe obstructive lung disease warranting an organ transplant is capable of walking 2km each day. My drive is 70 yards long and I cannot even get a third of a way down it without ending up in a coughing fit and I think that most of us would be the same. Brochiectasis is not a diease that flits in and out, each infection brings with it further damage particularly when these infections are the 'mottling' type. Certainly exercise is vital as is avoiding people with colds and 'flu. Drinking lots of water throughout the day is also essential to ensure that mucous is kept thin. The prognosis of our disease is variable, some people become extremely ill and do not last long but mostly, it is a long drawn out thing that gradually reduces quality of life. We also have to put up with other subsidiary disorders such as dry eyes and arthritis and in my case, ulcerative colitis. 
    • sdawoolsey
      sdawoolsey supercough

      Posted

      Hi sorry I am confused. You sound like you do not believe me, I am not sure. How old are you supercough? I did not say this is easy for me. I have just as much difficulty walking & I struggle up hills & stairs as we probably all do. I push myself because I know I am getting worse & my lung capacity has dropped. I have been told to walk,to exercise, to do anything that helps me feel better & improve my qualityy of life.

      Yes  I am facing a lung transplant, I don't make this up. I joined this discussion group because I don't know anyone else with this disease & I was interested in hearing how other people cope.

      I don't feel I need to be judged just because I say I walk 2km per day. I take regular rests, I sit down, I almost pass out, I get confused & dizzy - I struggle to breath. I get home, I lay down & I almost feel like dying.

      But the upside is I sleep better, there is less rattle & I think it helps me.

    • stellaclark
      stellaclark sdawoolsey

      Posted

      Hi to you, and all in the followers in this group. 

      I have now been to the Chest Clinic and had another X-Ray, and am pleased to say that the white spots that showed on the previous X-Ray are gone.

      I told the doctor that I had double my efforts with the drainage etc., and seems it has paid off.

      Bronchiectasis is a battle we fight each day, but we can with proper care keep as well as we can, for as long as we can.

      Thank you all once again for your comments and support.

      Stella

       

  • sdawoolsey
    sdawoolsey stellaclark

    Posted

    Wait..I did not really answer your statement

    I constantly have x-rays & I have permanent white areas on both my lungs. These are areas filled with mucus, which can end up infected or not.

    Generally it reoccurs quite often and I follow my specialist's advice - on that note, now refer to my previous note :-)

    Good luck with your health

    • stellaclark
      stellaclark sdawoolsey

      Posted

      Hi again, Do you know if the white spots can come and go, or are they permanently there now?

      I am feeling better now, not so breathless and tired. 

      I go for another x-ray in 6wks, so will let you know the out-come.

  • lesley05714
    lesley05714 stellaclark

    Posted

    Dear Stella,

    I also have bronchiectasis...do let me know how you get on, it must be a concern for you.

    Blessings,

    Lesley

    • stellaclark
      stellaclark lesley05714

      Posted

      Thanks for your reply Lesley.

      I did worry because it was something new for me, but after getting replies from this site I realise that it can happen with bronchiectasis.

      I will let you know more when I next go to the clinic for another x-ray in 6 weeks.

      Stella

  • Operalyn
    Operalyn stellaclark

    Posted

    Hi stella - I am a long term bronchiectasis patient too - I haven't had an xray for ages but white areas are not uncommon I believe - they used to find the odd one with me.  By the way I am 66 and was not supposed to live past my 20s so nah nah nah nah nah to the docs!

    Keep positive, keep active, keep resting, all the usual and I really hope things will improve soon.  We bronchectasis types tend to go on much longer than anybody expects!

    All the very best x

    • stellaclark
      stellaclark Operalyn

      Posted

      Hi Operalyn,

      I have always seen the white shadows on the lungs, but never the white spots.

      I am 70 this year, had a bad chest since I was 2, always been ill off and on over the years, but diagnosed with bronchiectasis 35 years ago.

      Like you said I do remain positive most of the time, try to do all the right things like you.

      I was reading about a man of 77 who has bronchiectasis and goes back packing. I know fresh air and exercise play a big part in keeping well.

      Thanks again

      Stella

        

    • sdawoolsey
      sdawoolsey Operalyn

      Posted

      That gives  me hope. I have had bronchiectasis since I was an infant, diagnosed when I was 32 so it's nice to know there are people out there living to 66 ... since I was told I'd be dead by 40. So here's hoping .......... good luck to you & your health too.
  • supercough
    supercough stellaclark

    Posted

    I have had these 'white spots' occasionally (usually refered to as 'mottling'. As the radiologists say it is most likely pockets of accumulated pus. However, as the pockets are physically damaging I would expect some kind of direct intervention rather than sending you off with vague comments. Whenever these phenomena are discovered in my lungs, I am usually given an intensive course of physio with perhaps a washout via a flexible bronchoscope. Of course everyone is different and this form of therapy might not be suitable for you but just the same, it should be noted that ANY localised pus spots in bronchiectasis will cause further damage. Perhaps a frank discussion with your specialist is called for . I would also add that seeing a nurse instead of a consultant/specialist is UNACCEPTABLE, you should always have access to a properly qualified doctor no matter how persuasive or apparently knowledgable the nurse might be. I recently attended (quite some distance away) my usual clinic and was met by a young woman nurse who annoujnced her self as, "your pulmonary nurse" whoe would be, "seeing you today". I politely but firmly advised her that she would not be doing so and I insisted that I see a specialist. Fortunately I was seen by my usual consultant but I lodged a formal complaint. Bronchiectasis is a dangerous and possibly lethal disease that requires careful monitoring by a propery qualified person and not a nurse.
    • stellaclark
      stellaclark supercough

      Posted

      Thank you for your reply, always good to hear from people who have experienced the same thing.

      I am due to go back to the Chest Clinic in 5 weeks now. I will be having another x-ray to compare with the last one.

      After what you have mentioned I will be asking quite a few questions, especially about the wash-out as I have not heard of this. Also I will ask to see, if not already down to see, the main doctor.

      The doctor is one I trust, he has looked after me for 20+ years, and is a leading authority in his field, has written many papers on longstanding bronchiectasis.

      I have managed my bronchiectasis the best I could over the years, but repeated infections have left their mark.

      I was always out of breath when climbing stairs etc, now I am breathless at other times, this being due to the narrowing of the tubes which come with longstanding bronchiectasis.

      I take ventilyn and atrovent in a nebulizer, this opens the airways and gives me back a quality of life. I also take gentamycin and saline as an antibiotic each day. 

      Hope things go well for you, and as you say you do have to be aware of what is going on and sometimes make requests for your own benefit.

       

    • supercough
      supercough stellaclark

      Posted

      Lately I am finding that my breathing has deteriorating rapidly. My consultant told me that my respiratory reserve is down considerably which is quite worrying. My main problem is this dreadful hacking cough that often produces blodd. I simply cannot sleep at night and I have tried glasses of whisky, cups of tea, Benylin, Tramadol and whilst some of these things have worked, eventually they stop doing so. It is clear that I am going downhill but then I was told that I would die young but I'm now 63 and not dead yet. I have a few secondary conditions such as dry eye (Sjoegren's Syndrome) and ulcerative colitis. I also have MS and have been told that there might be a connection. I tried a new treatment called 'Colobreathe' which is an inhaled version of colistin for a few weeks but my side-effects were intolerable with severe cough, tendonitis, and numbness on the tips of my fingers. I have also noticed a deterioration in my MS which up to now hasn't been too troublesome. Still at least my consultant is trying to help me and has been willing to to see or talk to me any time I have had a concern. My GPs are more or less worthless and I use them mainly to fill my repeat prescriptions.  
    • sdawoolsey
      sdawoolsey supercough

      Posted

      Yes me again. Did you get told the MS is linked to bronchiectasis? The secondary conditions I have received are acid relux, heartburn, damaged diaphram. Then ongoing warts.

      I am not certain what to expect in the coming years.

      Also I have an excellent Respiratory Physician. You should be referred to one by your GP.

    • stellaclark
      stellaclark supercough

      Posted

      So sorry to hear that you are suffering with many things at once. Like Lesley said, and I agree you need to be getting more help with your symptoms.

      Hope you can get some relief and have a reasonable quality of life.

      Hope the support you can get from others on this site will be of some comfort too. You are not alone. 

    • supercough
      supercough sdawoolsey

      Posted

      My neurologist told me that MS, inflammatory bowel disease, dry eye and that awful reflux are all connected in some way but it not is not fully understood why or how. It's odd that you mention warts, lately I have been driven mad with veruccas for no good reason. I am also plagued with acne which at 63 is quite annoying. There is also a condition that many of has called, tracheobronchomalacia or damaged airways. I have problems with swallowing and that's another thing, a huge goitre suddenly appeared in a routine CT scan. Rather than sticking out of my neck in the usual fashion, it has gone down behind my windpipe and in front of my left lung. And yes, you guessed it, yet another autoimmune disorder. Itis impossible to say how things will be for you, quite often when I get talking to fellow patients in the hospital waiting area, I have conversations with fellow sufferers and it is quite suprising how differently people are affected by bronch. Some have a slight cough with no other problems and some of us are very ill. It's the luck of the draw but think positively and try not to get down about it all.
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