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..
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
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?
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.
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
Cecile, it's not curable but that doesn't mean you're going to die in the near future. You need to ask more questions about medication, rehab groups and what your lung percentage is so that if you want to, you can check on your deterioration rate.
Bronchiectasis is one of the group of conditions under the umbrella of COPD and while you shouldn't be exposing yourself to situations where you might catch someone else's illness, no wonder you're depressed if you've hardly been out of the house for that long - that would depress me too!
There must be places you can go, friends and family you can visit where you won't be exposed to cigarette smoke or other pollutants? Try a rehab group for a strart: as I just said in another post, you really can't be rehabilitated from COPD but you can learn heaps of useful information like breathing techniques to conserve energy and not get so tired and breathless, lifestyle changes generally, medication and exercise.
All the best to you and stay on this site, it's full of supportive and helpful people
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
I've never heard of the salt cave treatment so I'm about to google it.
The rest of your advice is spot on
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?
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.
Full marks to this site. Sharing and caring helps. Thankyou.
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.
Jude, I am very glad that I saw this helpful site that helped me answering my concerns which by any means lessen my burden.. I will do all the advises and support the fullest I can. I want to live longer Im 48 years old now and this kind of disease brought a big trouble to me. Thanks a lot for the support.
Glad if it helps - hang in there, our lungs won't get better but our attitudes can!
Me too - found it accidentally from being another of their sites for statins/high cholesterol, that's a great site too
Thank you, I stand corrected and appreciate that I am very blessed anyway.
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.....
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.
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.
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?
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!