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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

0 likes, 62 replies

62 Replies

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  • reg1945
    reg1945 david_25160

    Posted

    Hi  Interesting to read  all these comments  .sooo  informative.  after 7 years of badgering  my current consultant i  still have no clear idea of the path this terrible desease is taking.  luckily this guy can write the phrase " its reassuring " but little else  . after  undergoing surgery to remove lung tissue from  asbestosis damage i  feel as if i just jump from one crisis to another. now  i  suffer  acid reflux  and  bloating which i suspect is related to the  bronchiectasis damage.   Gps  are in the dark regarding this disease. and without forums like this so would we be.   I thank you all for you input    
    • reg1945
      reg1945

      Posted

      Hmmm  Having read my own comments   i seem like a right whinger..   not intentionally    ,  just kinda frustrated  from lack of progress     which  i basically put down too  little time, and too little funding. for the medical profession  ,   in many ways they have my sympathy.  
    • david_25160
      david_25160 reg1945

      Posted

      hello reg, thankyou for taking the time to message me. I would'nt say you are a whinger at all! on the contrary it is me doing the whinging! but I scared myself with all the unknows that are going on with my health, the erratic short of breath thing is so disconcerting..... the acid reflux has got a lot to answer for that's a fact, the best advice I ever got on that was raising the head of my bed by 6" instantly stopped the terrifying nightime event when the I would awaken choking on the vile acidic mess that had come up my throat....yuck. and almost certainly caused this bronchiectasis.
  • Operalyn
    Operalyn david_25160

    Posted

    Hi David - welcome to the forum. 

    As I have said on here many, many times I have had bronchiectasis since I was a toddler and I am 67 now.  So unless you are very unlucky it is something you can live with.  I worked from the age of 16 to last summer when I was 66 so I am a testament to that. 

    A word for GPs - bronchiectasis was thought to be one of those complaints that had more or less died out because it was associated with childhood illnesses that are now routinely vaccinated against.  I got mine after a bad bout of measles when I was 13 months old.  A lot of GPs can be clued up.  My GP when I lived down south sent me to the Brompton Hospital and it has been brilliant.  It's a bit trickier to get down there now I live in Worcestershire but I will try to go for as long as possible as they are world experts there.

    Trouble with this wretched complaint is that the treatment is fairly primitive.  Infections treated with antibiotics, do your postural drainage regularly, learn breathing exercises, take exercise, drink water and get enough rest.  Well...I do my postural drainage as often as I can but life is a bit hectic at the moment (Dad in hospital) so its rather by the wayside, I take antibiotics when I need to (Azithromycin) and I drink a lot of water!  I hardly ever rest and I get exercise when i get a minute.  I am not perfect.  However, keep your sense of humour and if you feel anxious about it all use your specialist appointment to tell them everything that worries you. Take care of yourself.

    • david_25160
      david_25160 Operalyn

      Posted

      hello Operalyn, lovely name, I can hear you singing from here (far north highlands of Scotland) cheesygrin yes my sense of humour, if it can be called that, is essential for me especially at the moment. Interesting to read your story over quite a period of time, and the fact you mention Azithromycin, it was mentioned to me yesterday so I shall enquire with my doctor later today at my appointment. Must say that my condition has worsened slightly these past couple of days and the Co-amoxiclav are useless! an awful tightness in my throat, upper chest, awful phlegm, feel a real shortage of breath these past few days so am anxious for resolution, and of course my anxiety probably makes things worse. Thankyou for your time Operalyn, I will update as and when I find out more smile
  • reg1945
    reg1945 david_25160

    Posted

    hi dave.  you are doing exactly the right thing by  communicating with those on here with long term experience of this disease     im talking about the.. you are not alone in this kind of situation,,   and you are also right i think about  getting uptight about how you feel  its kinda natural but counter-productive in that  stress manifests itself in many ways    and a tightening of the chest wall muscles is one of them as well as exacerbating   the churning stomach syndrome.     co/amoxiclav is a wide spectrum antibiotic given in the hopes it will be a magic bullet  to combat  the bugs that  thrive in   over secreted mucus.   but you need to have luck on your side if it is to  overcome the very bug that  is invading you...   so far in that respect i have been lucky  and living by the coast  lends fresh air and  opportunities to exercise away from the population and  the threats to health they hold.  all in all   i could be a whole lot worse,       so  i wish you good luck  and do try to relax a little       
    • david_25160
      david_25160 reg1945

      Posted

      hi reg, just posted on here same time as your good self! see above somewhere ^^ I too live within walking distance of the coast so I have fresh germ free air to enjoy. You are so right about me needing to relax, I get so wound up about things sometimes, thankyou for your advice, and yes thank goodness for this forum, bless ya all cheesygrin
  • sabrina88
    sabrina88 david_25160

    Posted

    Hi everyone, I'm so pleased that I found this forum.

    I'm 27 female and 3 weeks ago I was diagnosed with Broncheitasis .... I'm really overwhelmed and worried as its taken 18 months to find out why I was having constant chest infections. I'm having a bad night with it , constant wheezing and I can't settle at all I'm exhausted. Is this normal?!

    I also have asthma and take serotide Inahler with ventolin and was today given a new Inhaler ciclesonide. I'm waiting for my CT scan which should show more but I'm finding that some days I'm feeling well and hardly have to take my ventolin Inhaler and other days I'm really struggling - like today sad nothing helps and I feel like this isn't going to ever get better .. Which It isn't is it.

    Really just looking for some support and guidance on what I can do to help me breathe a bit better. I have a little boy who's 4 half and my husband has to do most of the running around I just feel so down.

    Please help x

    • mo_69
      mo_69 sabrina88

      Posted

      I would await the results of your ct scan and Hope that you get these off your consultant and not your gp.

       

    • david_25160
      david_25160 sabrina88

      Posted

      hello Sabrina, I sympathise with every word and sadly am much in the same position as you having been recently diagnosed myself. It's a scarey thing, certainly in these first few weeks, though some people have lived with it for many years and have it controlled with antibiotics and good diet. I see the Respiritory Consultant for the first time this Friday so I'm praying that I get some answers and more importantly some help, I went for a walk today and really struggled on my way back, yet not so many weeks ago I was walking miles, albeit slowly. I think I have an infection in my lungs at the moment which is proving hard to shift. I'm sure before too long you will have oceans of support from the lovely followers of this forum, take care, bless you. x
    • ruthie2673
      ruthie2673 sabrina88

      Posted

      hopefully you now have a specialist in bronchiectasis seeing you. If not, my main advice is to get yourself referred to the right person. The CT scan should confirm the diagnosis and the extent of the disease, then you need the expertise of the team in the bronchiectasis clinic to help you.

      This disease has its ups and downs. Like you, it took nearly two years to diagnose me and I also have asthma. In between flare-ups i can almost imagine I am normal. However this thing does not go away so you need the right help from the right people.

    • sabrina88
      sabrina88 david_25160

      Posted

      Hi David, thank you for your response. Please keep me updated on how you get on. It's comforting to know that how i feel isnt unusual. 

      Had a bad night last night and tight chested today, I havent heard anything now for 2 weeks and feel like I have an infection coming for sure - no anti biotic that i have had has ever cleared up an infection properly but I will try and get in at the doctors today i think!

      How will you deal with your infection? 

      Best wishes to you x

    • sabrina88
      sabrina88 ruthie2673

      Posted

      Hi Ruth, 

      Thank you for your response. You are right, i too felt so well last week, went 4 days without using my inhaler and then suddenly it just came on so quickly since yesteday and today im bad. I hope to hear back soon from my consultant as I am eager to start on treatment following the CT Scan.

      Do you take daily anti biotics ? What treatment do you have?

      Best wishes 

      Sabrina 

    • Operalyn
      Operalyn sabrina88

      Posted

      Have a hug sabrina - you sound very worried.  You are right about bronchiectasis - you have good days and bad days.  Make sure you learn to use your inhalers properly - sorry that sounds ever so patronising but when I went to the nurse practitioner at my GPs practice for my regular health check she taught me and prior to that I was getting very little of the drug and a lot of fresh air! 

      I don't take antibiotics every day just when I need them to clear an infection.  Some people are on antibiotics daily for a while and others are on them three times a week.  There are various things that can be done to alleviate the symptoms but you really need proper advice from a bronchiectasis specialist and a visit to a knowledgable physiotherapist to help you with breathing exercises and maybe to teach you to clear your chest using postural drainage.

      It all seems very scary I'm sure.  I was diagnosed in 1953 when I was 5 but I have had it since I was a toddler!  I have led a pretty normal life - married (no children but that was my choice), worked from the age of 16 to 66, etc. etc.  It is not the end of the world being diagnosed with bronchiectasis but it is a bloody nuisance.

      You will learn to accommodate it, to use your inhalers, maybe do daily physio (not everybody does - I do), to take rest when you need it (if you're good - I'm not!), drink loads of water and try to keep away from colds and flu (nearly impossible I know).

      All the very best.

    • sabrina88
      sabrina88 Operalyn

      Posted

      Hi there,

      Thank you so much for your reply! I do feel really down about it, but i know there is no point dwelling too much. I think my frustration is with the delay is seeing a specialist. I paid to go private as the NHS waiting list was 4 months just to have an initial consultation, and I couldn’t wait that long. I saw a consultant on 7.3.15 and apart from starting me on a tablet and a inhaler I haven’t been able to start anything else until I have my scan. But after chasing a letter from the consultant this morning I’ve been told she is on leave and the process for referring me for my scan hasn’t even started. Annoying! 

      It is really comforting to get support on here, and to hear about your experience. It surprises me how one day can differ to the next. I have an appointment with the asthma nurse next week so will ask her about taking my inhalers, thank you for the tip!

      So do you take daily meds or only when you have an infection? Also, i haven’t found any anti biotic that has really shifted an infection as yet, what is your experience with anti biotics?

      Best wishes

      Sabrina 

    • mo_69
      mo_69 sabrina88

      Posted

      Hi sabrina the only way to get the correct antibiotic to clear u an infection is to have a sputum sample looked at so they can decide which antibiotic is the one you need. I don't bother with the doctor unless I have no option as they seem to have very little knowledge of the disease as you will see from others on here. They also according to the hospital will prescribe a weeks supply of tablets when in actual fact you may need up to 14 days. I have a specialist nurse in my chest clinic who I can phone any time if necessary.
    • ruthie2673
      ruthie2673 sabrina88

      Posted

      I see that you are seeing a consultant privately. You really have to be sure that their area of expertise is bronchiectasis and cystic fibrosis otherwise you will not get optimum treatment.

      If you go on the NHS you will have a nurse to contact in the clinic when you are in difficulties or unsure of anything, and a physiotherapist to help you too.

      As others have said you need to send off a sputum sample in order to get the appropriate antibiotic, so you need to learn from the physio how to bring it up properly and again as someone else said you need to take the antibiotic in a large dose for 2 weeks solidly. Normally you will have a standby supply of the usual one for your usual bugs so that you can start it as soon as the sputum sample goes off.

      I have been taking azithromycin, one tab 3times a week for the last year and that has kept me well. It does not function as an antibiotic in this dosage, but works as an anti-inflammatory..keeps away the sputum. I've been well for a year since I started this, and had almost forgotten I have this disease and then wham! back it comes. So I am in the middle of a 2 week course of antibiotics now.

      At the same time my asthma got considerably worse, I think because we were stupidly having our house re-decorated and paint fumes are a no-no really. So also on high doses of inhaled steroids to control that. Hopefully not for much longer.

      The main thing as I said before is to get the right specialist and therefore the optimal treatment. Also, as others have said many times, most GP's have little understanding of this disease.

    • sabrina88
      sabrina88 ruthie2673

      Posted

       Hi Ruth,

      thank you so much for all this information! Sorry to hear you have a chest infection at the momentsad I have too, but because i haven’t gone any further with getting another appointment they are not treating me for it, so frustrating. 

      Yes i went private for the initial consultation, and the Dr specialises in this area. She was meant to be writing to me to send me results of my blood tests (testing me for CF and other stuff) and send me a form to sign to transfer me back to the NHS.... this was on 7.3.15... and had nothing since.

      I think i am going to make an appointment at my GP tomorrow and take a sample in, i don’t think i can possibly wait 10 days for results and then the right anti b's thoughsad wonder if they will give me something in the mean time??!!

      I really can’t wait to get settled with a plan for this and also have the standby anti b's, the biggest panic is knowing you have an infection coming and not being able to treat it - do you get like that? 

      Again thank you so much for all your support, overwhelmed by the amount of replies... thank you thank you thank you, I don’t feel alone in the anymore!

      x

      PS - the anti biotic that you are on seems to be really common amoungst people with the condition.... interesting!

    • sabrina88
      sabrina88 mo_69

      Posted

      Hi Mo,

      That is really helpful to know. The Dr's have been giving me 5 days of amoxicillin!!!! I have been telling them for 18months that it does nothing at all for me, maybe slight relief but then once i finish them within 24 hours i am back to square one and struggling again.

      Looking forward to progressing with everything as the chest clinic has been mentioned several times through this forum and sounds great. In the mean time i will take a sample in tomorrow and hopefully get this infection sorted.

      Best wishes

      Sabrina x

    • mo_69
      mo_69 sabrina88

      Posted

      Hi Sabrina Amoxycillin I was told is an antibiotice that cures lots of different bugs and that is normally why it is prescribed willy nilly I think. I used to say to my doctor before I got to the chest clinic at the hospital that I felt as though my chest was sort of ok after my weeks supply but that it started again soon after and felt if I had had another few days tablets I may have been better but they said "no" when I mentioned this at a later date in hospital I was told the doctors cannot prescribe more than 7 or 8 days tablets only the hospital can. I don't know if this is true bit it seems to be. I also asked the doctor if it was not possible for me to have a prescription at home for when an infection started and they said NO hospital advised I do this. So you see it is no wonder we are struggling to get help in the right direction. People say you shouldn't use the internet for this but I tell you this has helped me a great deal. Hope it does you too. Keep fighting!!
    • ruthie2673
      ruthie2673 sabrina88

      Posted

      Hi Sabrina,  the trouble with amoxycillin is that it is not entirely effective against our most common bug...haemophilus...for that you need amoxyclav, and as everyone has said you need it in high dosage for two weeks,  no less.

      But the sputum sample is the main guide because the lab will direct your GP to the sensitivities for your particular bug, then you just have to get your GP to prescribe the right dose!

      My GP told me he couldn't order a CT scan in order to confirm the diagnosis. Fortunately I knew this was rubbish and told him so....he wrote out the request form and lo and behold I had a CT scan within a few days!

      I actually dread going to the GP with problems with this disease because i know I am going to have a battle on my hands. They must loathe me.

    • mo_69
      mo_69 ruthie2673

      Posted

      Why should we have to put up with this extra worry Ruthie. My consultant sends copy letters of my visits to me and the gp. They are aware of the quantity of tablets I am to have and twice I have been given a ridiculous amount one being 10 tablets one twice a day. (5 days worth) and the other 14 tablets instead of 14 days supply. I then have to return to the docs and get past the receptionist (the gestapo) and after a great sometimes heated discussion I will have to return the next day to get the prescription I should have had in the firs place. Thought it was just me until I found this forum and realise it is just gone beyond a joke. But what do we do??
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