Bronchiectasis - is it really uncurable?

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Hi. I was diagnosed of Bronchiectasis 2 months ago after coughing of blood and Shortness of breadth where I could imagine that already the end of my life. I was rushed in the emergency and the doctors done all the test and thats the findings.. The doctor said that this kind of disease is non curable and I have to accept. I really dont understand why the doctor ever said that. She said that anytime anywhere this can be happen again.. I am really confused and really nervous.. I have shots of pnuemococcal vaccine but since the flu vaccine is not available yet I am staying at home for almost 2 months now without mingling to anybody.. Im depressed.. 

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  • Posted

    Hi have you spoken to your own doctor?  I would expect you to be under the practice nurse as well who should be able to help you. I know it seems a 'no mans land' when you are first diagnosed but hang on in there and speak to your doctor x
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  • Posted

    Tell me about it!!!  I have been housebound with this awful thing for 14 months now and have been offered no support or medication. Perhaps it is because I am 80?
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    • Posted

      It doesnt matter whether we are eldery or not somebody must guide us. Im not really depending 100 percent what my doctor is saying because it scarred me a lot it seems that its the end of the world for me. I was advised to carry the medication anywhere I will go to be ready if in case things happen again which I think very depressing as if I am dying anytime. I asked myself if is it worse than Cancer?My friend's advise (a Dr) says that I need to have a vaccine shots for protection from infection so that I can fight viruses and bacteria especially in a public place. She gave me one. 

       

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    • Posted

      Morning daphne! I'm suprised you've been given no medication at all that doesn't seam right to me I had on my notes before the spirometry was done as Bronchiecstasis? it showed but after i had the spirometry done the doctor said it's definatly c.o.p.d was thought to be in the early stages but now in  stage two after another spirometry about a month or so later with questions asked & my answers came up with the stage 2. I was first on symbicort but that just caused me problems with my throat really bad pain & thrush then I went onto Fostair & salmeterol which I've been on since last year but this january I was told not to continue with the salmeterol as it seamstohave done its job , I'mnot sosure about that I must say! but keep on the fostair & the salbutamol since from the start I had salbutamol, now I've been off the Salmeterol my symptoms seam to be reappearing I'm begining to get a build up of phlem but can't get it up its so annoying do you get this problem!?I have all ways had a slight cough since most off the coughing subsided along with much of the phlegm I had much earlier, so I'm pleased to say the fostair & Salmeterol have helped quite a bit in the reduction of phlegm & coughing to a great extent I still get breathless at times I have been quite a bit this week compared to before & I am now back on predisolone for the third time again! I would go back & get a second opinion as there must be some kind of relief from your symptoms from what i've read about this lung disease there isn't a cure but there is treatment, there is such a remedy as the salt cave treatment if you have heard about it but apparently it's not suitable for everyone due to certain health conditions but it's not a cure because if it was it would be able to cure everyone regardless its as far as I've read just symptomatic relief & I've read the reviews & some have said it hasn't helped them they havent noticed much or any differance & some say it's helped them alot theres a few places in various areas one in south or south east london you can check it out online or get afamily member or friend to find out for you I can't remember if theres an age limit but regardless as from now whether you decide to visit a salt cave therapy center or the doctors you should not have to suffer in silence with this horrid disease there is treatment of some kind!i wish you all the best daphne let us all know how you get on I've got to go now take care!X
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    • Posted

      That is terrible!   No medication?  That's ridiculous,nothing can cure COPD but medication can make life a lot more pleasant, ditto support.  

      Can you find a more helpful doctor or as suggested above, a Practice Nurse?   

      Please, don't let this situation go on any longer - do you have a family member or a friend who could advocate for you if you dont feel you can do it yourself?

      All the best 

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    • Posted

      I've never heard of the salt cave treatment so I'm about to google it.

      The rest of your advice is spot on

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    • Posted

      Thank you Karen. I had a chest X-ray And a CT scan over 6 weeks ago but my doctor and Consultant have not yet allowed me to have results. Duh! My doctor is uninterested. I saw him last week and he has ordered a series of blood tests regarding my liver and an endoscope for my stomach neither of  which gives me any trouble. I am on my general surgery consultant's list for a gall bladder removal (something else with no symptoms) but my dr doesn't agree. OInam also on a gynae a list for a rectocele repair op because I was distressed because I wet myself during coughing attacks.

      What I want, I really, really want is someone to address this coughing situation instead of ignoring it before I undergo my second total knee replacement which is a major,major operation and needs heaps of aftercare and physiotherapy. 

      And yes, it needs an enormous coughing session to expel that awful sticky mucus and leaves the neighbours deafened and me exhausted. I get frightened, do you? 

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    • Posted

      One of my daughters is a practice nurse but she doesn't want to get involved. Not PC! Anyway she lives far away and I rarely see her. Myother daughter takes a day off and travels a long  way to accompany me to appointments but is also a medic and feels it is not PC to pass an opinion. 
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    • Posted

      Sorry but I don't see how the term PC (presumably meaning Politicfally Correct?) has any relevance here:  Political Correctness was originally about treating others with respect and inclusion and has been given a bad name, almost become a dirty word, by people who want to feel free to be as sexist/racist/homophobic as they wish without criticism.

      There have ALWAYS been ethical issues about medical professionals treating their family members or getting involved in the treatment they're getting from others.    

      If you're getting practical support from one of your daughters you're doing well, I don't even ask my daughter (only child) for that sort of help any more and she doesn't live very far away at all, too many excuses about why she can't do ti and too much eye rolling and impatience, who needs it?    If I need to be driven to appointments I ask a local charity group for help.  

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    • Posted

      Morning daphne! I apologise for the delay in answering! Yes I do get afraid sometimes as when I lay down to go to sleep I sometimes get breathless & worry that I might not wake up again, but I have the salbutamol by my side I sometimes wonder myself if I'm disturbing our neighbours when I have a coughing fit but so far they haven't complained I hope I haven't jinxed myself as soon as I write or say something the opposite usually happens! Anyway I hope you get the propper treatment your entitled too & all goes well please let us know! I'm ok just getting over an exaccerbation & have to go back in a  weeks time to see if I still have wheezing & the other sound the doctor heard which I can't remember what was said but will ask next time I go back! Meanwhile keep as well as you can.....
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    • Posted

      I've found the only thing to do when I wake up breathless is sit up on the edge of the bed for a while, maybe have a drink of water and/or an anticol,maybe walk around a bit and then try lying down again and if still breathless, get up and sleep in a comfortable armchair.

      My understanding is that with COPD we're all going to end up having to sleep sitting up, so I just think to myself "Oh, another practice run for down the track".

      TIP I'VE BEEN MEANING TO PASS ON FOR AGES which usually works for me with the coughing, is an Anticol (prob any other lozenge with menthol would work) and then a glass of icy cold water or juice - and I mean ICY with ice cubes in it.  It seems to act like a local anaesthetic to some extent and usually brings me some relief at least for a while.

      I don't cough in the night nearly as much since I started using Symbicort, for which I'm very grateful.  I live alone too and have checked that hte neighbours can't hear me and mine can't either!   It must be difficult for families/partners of people coughing all night.

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    • Posted

      I am not frightened of dying, Karen. Just don't want to be there when it happens LOL. Joking aside, I have been emergency ambulanced and hospitalised three times in the last year so always have a bag packed now and so have a bath and wear something very decent Ito go to bed.redface One time I pressed my care line button before collapsing on the  lavatory and  came round to find two policemen in the bathroom with me before passing out again and coming round to find two ambulance men AS WELL!  Kidney stone and gallstone crushing ops and low blood pressure behind me but at no time has anyone really addressed. My coughing problem. It is interesting to hear that medications can help but doctors don't like being told what we've read on the internet, do they?
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    • Posted

       Oh, and another ambulance ride and 7 hours in ET with asthma attack. Do any of you have asthma and post nasal drip as well as bronchodilator stuff? I was told once in hospital after an X-ray that I had fluid in my lungs and another time that I had "gunge" in there. When I mentioned it to my doctor he said that wasn't a medical term. So there it is. Still no medication or advice. Thank you for listening, my treasured virtual friend!
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    • Posted

      No they don't and a lot of the time with good reason:  sites like this are invaluable because it's clear it's ordinary people sharing their experiences and issues, unlike the psuedo scientific ones peddling "alternative" cures for everything under the sun.

      Say a "friend" mentioned it ... well that's not really even a lie, is it?

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    • Posted

      Oh Jude! My family think I am mad being more comfortable spending the night   downstairs in my armchair. For "us" this is quite normal then? I have always loved my bed....too much perhaps ......but it is not unusual for me to cough until about 4am and then after three hours sleep to wake coughing again. whereas in the chair I can easily sleep all through the night with only minimal coughing

      . Oddly enough, I have never liked or bought sweets but discovered a couple of years ago that sucking two sherbert lemons while falling asleep helped soothe the cough. Yes, that's AFTER cleaning my teeth. Please don't tell my Mummy...or my dentist cheesygrin

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    • Posted

      Whatever gets us through the night, daphne!   Your coughing sounds really bad, does your doctor know how bad?

      I don't have any real teeth left as of a few months ago so can eat whatever I like in bed guiltfree, the upmost top favourite being dark chocolate, the darkest I can get ....dates are good too ..... not talking about any medicinal purpose, just because I like them

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    • Posted

      I am not sure what either my doctors or my consultant knows about my cough. methinks I bleat about it too much and they are blanking me out and concentrating on other problems that they CAN help. So I should be grateful. 
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    • Posted

      Why you should you be grateful if they're ignoring something which is affecting your life so much?  I think it's more likely you're not "bleating too much" but not asking strongly enough.     

      I don't understand:  if you're "bleating" about it, why do you say you're not sure they know about it?

      Can you take someone with you next time and have any questions worked out in advance & written down, starting with the most important?

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    • Posted

       Yes, one of mt. daughters came with me last time and one of my sons the time before. Each told how my life has been seriously impaired over the last 15 months and how I had been able to attend a family wedding and other family celebrations let alone go to church or shopping because of coughing and choking up mucus and food as well as wetting myself but came away with a prescription for indigestion! Duh!
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    • Posted

      Well you may have reflux too, but apart from that what are these so-called medical ":experts" on about????   

      That mucuus is awful isn't it?  Until I had the symbicort I was waking up choking on it, which was really scary in the middle of the night,  but not any more except when I had pneumonia.  Wetting yourself from coughing is rotten too:  at one time I was wearing panty liners when I went out, because it would happen when I stretched to get something in the car or moved at a certain angle and occasionally from coughing.

      I've started doing my pelvic floor exercises again and the urinary incontinence seems to be improving slowly so far.

      It really sounds as if they're just not listening to you - how about going in with a written letter and just handing it to them?  Maybe other people on here will have suggestions, I hope so for your sake.   It's bad enough being ill without being negated by people not listening to you.

      You're lucky to have supportive kids, my daughter doesn't want to know and still doesn't know I had pneumonia for a couple of weeks recently.  I do have supportive friends but hate to ask for help unless I'm really desperate.

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