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Confused

Posted , 5 users are following.

denise21511
denise21511

HELLO,  i was told i had i had Bronciectasis im May of this year,after 18 months of bringing up fluid, but before being diagnosed,saw a specialist,who said i had scaring of the lungs ,but after recieveing a copy letter that was sent to  my GP,it said i was suffering from fibrosis, and should be made aware of the importance of exerbations,my GP has not metioned anything, i wonder if you guys could Help.

0 likes, 14 replies

14 Replies

  • donna57830
    donna57830 denise21511

    Posted

    Hi Denise, I was diagnosed with 'mild' Bronchiectasis in May this year, i have now had this productive cough for over 12 months. Sometimes it is just annoying, other times it is almost constant. I have been told by my Consultant and GP that it may be a 'Reflux Cough', despite the fact that i have no gastric symptoms (heartburn, indigestion etc). Nothing seems to be improving it: Omeprazole, Mucolytics, Inhalers (I have Asthma, also). I despair that this could be constant for the rest of my life. Constantly 'spitting' up mucous and pellets is highly embarrassing, and exhausting. Hope you find what you need. Good Luck.
    • denise21511
      denise21511 donna57830

      Posted

      Hi donna57830   Iknow exactly what you mean,if it is Bronciectasis it wont go away, ,like me you need to sit down and talk to your GP,and get a proper diagnosis,i dont think GPs know much about bronciectasis,iI also had a productive cough for nearly 2 years , finaly got to see a consultant who said i had fibrosis, after sending me for a CTscan,was given a different inhaler which did help,for a short while,got fed up with bringing up phlem so GP sent me for xray and 3 weeks later said i had Bronciectasis,Go back to your doctor,ask for CT scan , Thanks again for your reply ,and i hope you get sorted.
    • lesley05714
      lesley05714 donna57830

      Posted

      Hi Donna,

      If the sputum that you are coughing up is green, then you have an infection; a sample needs sending via your GP to the hospital for the right antibiotics. Very straight forward...all being well.

      Omeprazole is plain dangerous if you haven't any heartburn. It is very addictive and can give you heartburn when you come off them where you may have had none before. It will not cure an infection. I was prescribed it to try, for a productive cough that was terrible and I ended up with a lung bleed! A blessing in disguise as then I was diagnosed properly with Bronchiectasis by a specialist.

      To stop a tickle, try chewing stem ginger, strepsils, a little honey, various throat lozenges, etc.

      Trust you get it sorted, keep us posted. Some good replies below,

      Blessings,

      Lesley

    • donna57830
      donna57830 denise21511

      Posted

      Hi Denise, thanks for your reply. I had a CT Scan in May and then 'mild' Bronchiectasis was diagnosed. Have been on Seretide for my Asthma for several years, but currently on Asthma trial inhaler. The cough started long before starting the trial. The only time i get rid of this 'glue' is if i actually vomit, but then it returns within a short time. I was given the mucolytics because this 'glue' like mucous used to wake me up in the night with a choking sensation, very scary experience. It seemed to work, but now the 'glue' is just constant. I am seeing the Consultant again next month, just hope he has some ideas. Thanks for your interest.
    • donna57830
      donna57830 lesley05714

      Posted

      Hi Lesley, the 'plugs' and sputum vary in colour from, clear, white, yellow and very occasionally green. I have already had 3 course of Antibiotics and Steroids this year. The 1st lot of Steroids made me feel better than i have in years, but the effect was very shortlived, about 3 days. But, it was great while it lasted.

      My GP told me to double my dose of Omeprazole to twice a day, no improvement to cough or 'glue' like mucous. I was diagnosed with 'mild' Brochiectasis after a CT scan in May. Are you taking regular treatment for the Bronchiectasis? If so, what is it?

      Thank you for your reply and advice, it is appreciated.

    • lesley05714
      lesley05714 donna57830

      Posted

      Hi donna, the Omeprazole should not be taken for very long; put it in on google for adverse side effects...they are very serious and no one is exempt from the long term effects.

      You must ask to see a specialist and at the very least ask the doctor to do a sputum test, it is so important to identify the bugs.

      3 courses of antibiotics and no sputum test is like firing in the dark. I am on Azithromycin 250mg which were the result of a sputum test. I am much better now and giving the antibiotics a rest for a while. I drink lots of water to thin the mucus and use a 'flutter' most days to help bring up the sputum. A lay down after lunch plus the flutter, brings quite a lot up and saves the embarrassment when out and about.

      Regular spacing out of parcels of energy, and realizing that you will not 'go back to normal', a rest after lunch when you can, will give you energy for the evening. (Now the cool evenings are here, I don't go out in an evening).

      Let me know how you get on with the doctor;

      Blessings,

      Lesley

  • reg1945
    reg1945 denise21511

    Posted

    Hey Denise..   getting a firm diagnosis ,and  consistant  monitoring by the professionals is  the difficult part..  after 7 years  of mild  but constant effects of  bronchiectasis.i have learned to be self reliant  and , use all  those  alternative methods of relief  that the doctors suggest  and mostly it works..      exercise is vital     hydration is vital,  and  a positive attitude goes along way   ..only when i get a real infection do i resort to antibiotics.   mostly  in the wintertime when  these conditions are most prevalent..  avoiding obvious sources of   contamination is difficult  but  kinda rational...i started this illness with a constant and debilitating cough  and expression of much purulent secretions .but with exercise and a  one off  course  of   Co Amoxyclav625,over17 days i have been cough free.. hope this helps         
    • denise21511
      denise21511 reg1945

      Posted

      THANKYOU,reg1945,   i do try to get as much exercise as i can,having two young grandsons keeps me on my toes,and ive always drank lots of water,  but im finding it very embarasing,when in public, as people have a tendancy to glare,when i bring up sputum,i now am reluctant to go out much, which i must say is making me depressed slightly .   Im going on holiday soon and have been prescribed Doxycycline 100mg,also prednisolone 5mg  , im hoping this will help,while im away,and when i am flying also.I was also given a turbo inhaler, budesonide/formoterol,fumarate dihydrate, by the consultant,before i was diagnosed with Bronciectasis, once again THANKYOU for your reply it has helped a gret deal .
  • ruthie2673
    ruthie2673 denise21511

    Posted

    Hi Denise..what a confusing story for you. I'm not clear who diagnosed bronchiectasis if afterwards a specialist said you had fibrosis?

    I think you need to ask your GP for a detailed explanation of your true condition and what the treatment will be.

    As you can see from this site people's experiences with bronchiectasis are mixed but it can be 'managed' but not cured. 

    I think pulmonary fibrosis is different, but may be caused by bronchiectasis.

    • denise21511
      denise21511 ruthie2673

      Posted

      Thankyou ,Kathrine02673   " yes" your so right ,i need to sit down with my GP and find out the true facts, then maybe i will be able to manage whatever i have a little better. Thankyou so much for your reply.
  • supercough
    supercough denise21511

    Posted

    If there are fibrous tumours in your lungs, further tests must be carried out. It could just be CF, although that is unlikely because you would have been ill for most of your life. Other lung diseases can cause fibrosis such as sarcoidosis and it might be that your doctor needs to eliminate this. Sarc is yet another 'orphan' disease that few GPs know of and only a few consultants specialise in,

    Bronchiectasis undoubtedly causes scarring but seldom are these 'scars' fibrous. They tend to be similar to acne scars inside your airways that directly affect the normal drainage of your lungs. They are also little rallying points for any nasty bugs you have to have.

    You need answers and you need them quickly, the treatment for sarc is very different from brochiectasis. NEVER be afraid to question a doctor whether consultant or GP, they are not in the least infallible as I have discovered to my cost.

    • denise21511
      denise21511 supercough

      Posted

      Thankyou so much supercough,will make an appointment with GP this week,i dont think im getting the support that i should be getting,will ask about sarcoidosis, which is something ive never heard of,!                            Thanks again for your help.,stay well .
  • ruthie2673
    ruthie2673 denise21511

    Posted

    Hi  Donna....some specialists believe that acid reflux from the stomach, which may be without symptoms, can be a cause of bronchiectasis, and make it worse. Personally I feel looking at lists of side effects can be counter productive...all drugs have side effects, so-called 'natural'remedies have side effects, your disease has side effects...you have to balance the gain against any possible problem.

    I do take omeprazole twice a day, before breakfast and again before supper, and I also take ranitidine before going to bed. Instituting this regime resulted in the first reduction of my cough after after more than 2 years of horrendous chest problems. It still got occasionally worse, especially if I caught a cold or something, then prompty treatment with the appropriate antibiotic in a large dose for 2 weeks minimum is essential, after sputum testing.

    I now also take azithromycin, 250mgms 3 times a week. This is not acting as an antibiotic, (the dose is too low) but as an anti-inflammatory, reducing the amount of sputum I produce. Since starting this I have had no further chest infections, but always religiously do my physiotherapy every day to get up what sputum there is.

    As everyone else says, finding a hospital department that is geared up to treating bronchiectasis and a GP who is interested and responsive is all important.

     

  • lesley05714
    lesley05714 denise21511

    Posted

    Hi denise,

    There is a good thread on this site about the 'long term use of Omeprazine' which is well worth reading; the drug is very damaging if taken on a regular basis...not just side effects but consequences; you will have trouble from limiting the acid in your stomach. It is there for a reason; look for a diet to tackle acid reflux on the web. It has a lot to do with Alkaline foods, acid foods and neutral foods, research them all. Food combining. Don't just take the tablets and eat what you want to! Eat what is right to eat for you, it takes a lot of research as the doctors never advise on people's diet but just dish out the tablets.

    Blessings,

    Lesley

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