Time between exacerbations.

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I would like to gather some idea of the frequency of exacerbations of bronchiectasis (GP/hospital referrals, treatment) experienced during one year, in order to get some idea of the status of my condition of non-CF bronchiectasis. My last stay in hospital (five days) was early 2013, so I guess that this is a mild history compared to some of you reading this thread? Or is that the norm?  I know that there is a severity index and wonder if this is common knowledge.

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  • Posted

    Hi Terry I am fortunate enough not to have had to be admitted to hospital as yet. Had four outbursts between September and January and they have been keeping a close eye on my situation. I now have and antibiotic which i am trialing called Azythromycin I have to take it 3 alternate days a week I believe if I have an infection I can also take my Rescue pack as well. I also take Carbosistein (Mucodyne) to keep the phlegm thin enough to get rid. I had no idea there was a severity index. This is a very informative forum which has given me so much good advice hope you find it so.
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  • Posted

    I,too, have been lucky not to be hospitalised. Until I started on azithromycin about a year ago I was having 3 or 4 exacerbations a year, but could go for 6 months or so with no cough and no phlegm.

    Since being on azithromycin I have had one exacerbation recently which responded quickly to the right antibiotic, but i was left with tight breathing and ended up having to see an emergency doctor and have a short course of oral steroids,(I have mild asthma too). i still have more shortness of breath than my usual and am taking greater doses of my inhalers than normal, and still taking azithromycin. Not sure if this is a post-infective thing, general levels of air pollution and spring pollen....who knows.

    Most of the time I feel well, and have a lot of energy for my age.

    I was told i had a mild case of bronchiectasis. I still find it very frustrating when these infections seem to come out of nowhere.

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  • Posted

    Hi Terry,

    I have never had to stay in hospital, although I was offered a stay after a lung bleed but as we only live a few minutes away from the hospital, I just took the antibiotics and then followed up with a CT scan which diagnosed bronchiectasis.

    Going off my own experience, if you feel off colour at all and your situation changes, a sputum test is the first place to go.

    I had to change my doctor to get one, the old doctor wouldn't take me seriously and and said sputum tests were a waste of time!! What planet do these people live on.

    Now I have Staphylococcus Aurelis in my lungs and a course of Tetracycline 250mg four times a day for 7 days. Treatment is all thanks to my new...very efficient...doctor. I am off to the specialist at the hospital next week.

    Do hope this helps. I also have had Azythromycin three times a week, but stopped them as someone on the forum said to stop them before a sputum test.

    Blessings,

    Lesley

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    • Posted

      Ooh that is good to know Lesley about stopping the axythromicin  I didn't know that. Did you know you have to have regular blood tests in case they affect your liver and they can also cause deafness. Agree totally about the doctors.
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    • Posted

      Wow! Now I have learnt something else...I will ask for a blood test, next week at the hospital...better safe than sorry! Thank you
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    • Posted

      The hospital told me this when they advised that I took it. Was worried at first because you know the length of "side effects" listed and the fact he had actually mentioned these two was worrying to say the least
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    • Posted

      Hi Mo,

      These Tetracycline tablets are playing havoc with my system! I can't stray far from the bathroom. I've also found that I need a very light diet and just have a salad for a 6pm meal, keeping fish for lunch and tofu or quinoa for the evening. I will be so pleased when they have finished, 6 more tablets to go...if I last that long...

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    • Posted

      Nearly all tablets seem to have a nasty effect on me. Must be a delicate soul ha ha. If I have had problems lasting too long they normally change my medication. Some things just don't suit everybody. You couod ask your chemist they are usually quite good if they are as bad as that maybe you shouldn't be taking them you never know. It usually tells you the side effedts and if that is one of them it often says contact your doctor or pharmacist for help or advise.
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    • Posted

      ...only one more day to go, I'll make it, eating very light...must go to the loo...cool again...
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  • Posted

    i was diagnosed with "mild" bronchiectasis...which has worsened steadily over 4 years.  My pulmonologist works mostly with end stage pulmonary pateints...so I think that colors his insistance that I have a "mild" case.  I have been in the hospital three times.  Second time in August and the last time three weeks ago.  Over the past two years my exacerbations have increased to about every 4-6 weeks.  By exacerbation I mean getting into a state where I can just manage to get back and forth to the bathrom because of shortness of breath.  Then it is onto prednisone. But I think I have made a breakthrough.  I discovered that my asthma doctor did not realize that bronchiectasis was one of my diagnoses.  She has approved the new treatments started at my last hospital visit...nebulized saline solution, a flutter valve, and breathing exercises.  I have also added an OTC med recommended by my primary care doctor.  It is called Sinatrol and is doing wonders thinning my mucus.  I have recently added walking 20 minutes a day to my routine.  Am finally seeing some hope for improving my lifestle, which has been severely impacted by my "mild" bronchiectasis.  So...there are definitely things that can be done, and that has done much to restore my spirits!!
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