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newly diagnosed bronchietasis, scared!

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david_25160
david_25160

hello, I'm a male aged 60, yes I know I do'nt look a day over 45, thankyou! recent repeated breathlessness for no apparent reason, repeated chest infections prompted firstly a chest xray which perplexingly was "clear" then after repeated visits to my gp finally a ct scan of my lungs showing the bronchietasis, which I had never even heard of! currently taking steroids and co-amoxiclav neither of which appear to help, Ive got a Symbicort inhaler as preventer and Salamol as relief, once again I have to say that neither appear to help at all which alarms me no end! Got an appointment on the 20th with a respiritory consultant so fingers crossed for some relief, Anybody else relate to this please? I'd be delighted to hear from you, thankyou. cheesygrin

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  • ruthie2673
    ruthie2673 david_25160

    Posted

    hi David....if the co-amoxiclav is not effective then presumably you have a bug in your sputum which is not sensitive to it. Did you send a sputum sample off to the hospital before you were started on the antibiotic? Just giving a random antibiotic is not the way to treat this disease.

    Sadly we are often harbouring the bugs permanently and they flare up into a full blown infection from time to time.

    Hopefully once you see a specialist, I hope with a special knowledge of this disease, you will start to get the correct treatment. I hope you are not taking oral steroids.....inhaled ones help, but I think oral ones are contraindicated.

    I think you will see from other posts that GPs seem to have little knowledge of this disease.

    At least you finally got the CT scan...how long did that take to happen from the start of your problems I wonder.

    • david_25160
      david_25160 ruthie2673

      Posted

      hello Ruthie, as it happens I'm awaiting the results of my latest sputum samples, tomorrow I hope, the strange thing with them is that the previous two entirely seperate sputum samples contained a bug that by all accounts normally would be in the stomach?? no further explanation from gp, he just did'nt know. So I'm guessing that is why the antibiotics are failing, also just finished a 5 day course of steroid tablets without any benefit, Prednisilone I think is how you spell it' My goodness its frightening having a constant wheeeze and rattle at the back of my throat, I get a few minutes relief with a throat lozenge, does'nt last sadly. I reckon I will have to go back to the gp tomorrow and see what's next to try. Bless you all for replying, I will get round to individual replies soon. oh by the way Ruth, it's probably 12 months perhaps more before I got the ct scan, had 3 xrays all negative.
    • ruthie2673
      ruthie2673 david_25160

      Posted

      hi David...that's interesting. Some doctors think that gastric reflux can cause or exacerbate bronchiectasis..do you have reflux or heartburn? it could be that omeprazole would help you. Sometimes no bugs are culture in the sputum because too much time has elapsed from collecting it to it being tested....

      But really as everyone else says one's GP is usually useless and only the specialist will help sort you out.

      It's not a nice disease but most of the time you can live a normal life, it just hits you with infection just when you are least expecting it.

    • david_25160
      david_25160 ruthie2673

      Posted

      yes sadly Ruthie it would appear that a long time untreated hiatus hernia is the cause of this, I woke up on many occasions choking on the vile acidic bile in my throat! this has apparently caused a "thickening" of the skin inside my throat plus the damage to the bronchi, the joys of getting old (not)
    • miracle_man
      miracle_man david_25160

      Posted

      Hi Dave. Don't worry. It is not a death sentence . I was diagnosed Brochiectasis, emphysema, hiatus hernia etc12 years ago. I keep acid down with a brill drug called Famatodine. Pepcid is real name. Been on it 18 years. Never get replux anymore. Carefull what I eat, absolute no ready microwave meals. Keep off citrus fruits to. 4 1/2 years ago I was very ill with copd bronchiectasis etc, was on oxygen for 5 years. Thought there was no hope. Suddenly a consultant put me on a antibiotic called Azithromycin. No more 'flareups' no need for oxygen and I have a fairly normal life. The green 'gunk' is useally produced in the bronchiectosis. Bronchiectasis is actually scared lung tissue usually from pheumonia at some time or smoking. This Azithromycin does not work for everyone but it did for me. Try it, nothing to lose. Only took 4 days to sort me out. I take 500mg 3 times a week. It is still working.I also have 500 mg seretide and tiotropium. Well all the best and don't worry.Take care John 
  • td3
    td3 david_25160

    Posted

    David, I am 53 and was just diagnosed with this in November.    I am on flovent 2x a day.  Dr says I have a mild case.  I found out I had this by seeing a cardiologist!  I was having random chest pains--mainly on the left and some shortness of breath that was random--sitting or exercising--it was just kind of come and go.  I had an ekg, stress test and a calcium score--all normal as far as my heart, but the calcium score is where he saw the bronch and referred me to a pulmonologist.

    I had never heard of it either, so I did quite a bit of reading, got some expectorant and starting taking vitamins (couldn't hurt, right?).  I have not had the chest pain since, so I am assuming it was from from mucous gathered in my lungs.  I have also not been sick other than a cold/sinus infestion about once a year.  I am assuming that the cold I had last winter was from the bronch because I had a harder time getting over it and felt fatiqued for quite some time.

    I don't know if you exercise, but I was relieved to discover that exercise is good for us--especially swimming.  I go to aqua fitness 2x a week and can tell you that really gets the mucous moving out of there and I feel like I breath better.  I'm still learning all the ins and outs of this condition, as you are.

    I also had asthma as a child, but this is a bit different.  Annoying just the same!  My goal is to keep this from getting worse and to keep working out and using my lungs.

    Good luck to you!

    • david_25160
      david_25160 td3

      Posted

      hiya td3, thanks for your input! sadly I cannot swim despite having been born and raised on various lighthouses as a child, so that exercise is'nt available, yet. I do walk the shoreline most days so plenty of the freshest air. May I ask what vitamins you found to be so helpful please? I take vit d, co q10, b complex at present, thanks lol
    • td3
      td3 david_25160

      Posted

      I am on a probiotic, basic am, basic pm, vitamin d, spirulina, antioxident, omega 3, anti-inflammatory enzyme formula, magnesium, osteo advance.   I have osteoarthritis and allergies, so some are because of that.  I do feel like I have more energy since I started them.
    • sue00942
      sue00942 td3

      Posted

      Hi David. I was diagnosed 3 years ago when i felt breathless on excercise. I was told i had bronchiectasis but it was so  mild i shouldnt be getting breathless! I was then told by the nurse that i was lucky as it was just starting and i could work with them and do everything i needed to at their clinics to delay the progression of the disease. . Naturally i thought ok it does appear i am lucky. However that was 3 years ago and i recently went to the doctor who said he didnt tnink i would be accepted at the clinic as it is so mild. I explained i wanted to work to reduce the progression of the disease and he has referred me.

      I am also confused about some of the symptoms. I have read that cynosis of the fingers and toes (which i get) is an indication of moderate bronchiectasis, as i pale skin (which i also get). Cant get any joy but have just moved to another town and will be attending another hospital so fiingers crossed.

      When i meet friends they all say i dont look ill but i want to keep it that way! I feel like the nurses think i hypochondriecal and all i want to do is to reduce the progression. When i come from the surgeries i begin to wonder if i am making it up, but doing excercise assures me im not.

    • david_25160
      david_25160 sue00942

      Posted

      Hiya Sue, thankyou for your message. Must admit I too am confused by some of the symptoms, since my 1st message I've been for a endoscopy which has shown me to have damage to my osophogus as well as the lung thing, called Barretts Osophogus, excuse my spelling. So I'm now awaiting the results of 4 biopsies taken when they examined my throat, stomach etc, that's worrying, hoping that they are benign. My breathlessness has got worse past week or so, just finished a course of antibiotics which did zilch to help! Extremely frustrating times for me, perhaps the respiritory consultant will be of some help on Friday, I have heard of another antibiotic on this forum which may help, if they would prescribe it! It's really frightening the lack of breath I have, my peak flow is falling gradually too, I make it worse by reading medical things via Google that I really should'nt read. Take care Sue, hope your new hospital gives you what you need, different consultant may have different approach entirely. Keep in touch please, it's nice to chat, thankyou smile
    • sue00942
      sue00942 david_25160

      Posted

      Hi Daaavid. Thank for ypur reply. I really hope things are ok for u. Let me know. I sometimes think im going doolallee as people look at me as if i am lying. I was a psychiatric nurse but have got the sack as i couldnt do a control and restraint cours which involves 4 days on a mat in a gym trying to restrain poeple so they can be injected or calmed down. The occupational health doctor however disagreed, and said i could do it. I refused and along with a bit of bullying for good measure i was sacked.The lack of stress with the job has helped a little, but wish i could get a good cosultant and nurse. Good luck Sue
  • george43384
    george43384 david_25160

    Posted

    Don't take any inhaled steroids. So my comment on how they effect antibiotics.

    • david_25160
      david_25160 george43384

      Posted

      hello George, mmmm lots to think about for me is'nt there? for sure the inhalers are useless at providing any relief so avoiding them would'nt harm just now, I had 5 days of Prednisilone steroid tablets, finished today, no help, have constant phlegm and rattle at the back of my throat these past few days, almost feels like my throat wants to close. Doctor tomorrow I reckon!
  • miracle_man
    miracle_man david_25160

    Posted

    Hi Dave. I had similar problem to you to for 6 years. Lots of gunk all sorts pills etc. Consultant put me on Azithromycin. It worked. Am a new man now for last 4 1/2 yeras. No more infections or flare ups etc. Does not work for everyone but often does if your problem is bronchiectasis. 

    If you go onto drugs.com and look up AZITHROMYCIN you will read a lot of reviews. Two people from patient.info are now much better after taking my advice. Sounds too good to be true? Maybe but it worked for me. Take care and good luck. John 

  • mo_69
    mo_69 david_25160

    Posted

    I had repeated prescribed antibiotics for chest infections over a number of years and eventually asked to be referred to a specialist. Had already had the usual xrays which show nothing. The specialist got me a ct  scan which showed up the Bronchi. Apparnetly it doesn't show on an xray I had lots of bronchitis as a child and apparently this is the cause of it for my damaged lungs. Doctors just kept telling me it was from my smoking 40 years ago. I really believe it is a waste of time seeing a GP they really don't appear to have any knowledge at all. They had tried me on all the inhalers none of which made a bit of difference. This group is the best thing I have found for help. I have to puy frequent samples in to find which bug we are tackling at the time. As has already been said not any antibiotic cures all bugs. Have you done any breathing excercises or postural draining you will get advice about these on here and it is neccesary I assure you to keep the bugs from breeding in your lungs. Any problems try and contact your specialist for advice not your GP.
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