does this site have any members with ... - Lung Conditions C...
does this site have any members with bronchiectasis
I have bronchiectasis. I was diagnosed a little while ago after a CT scan, having been treated for 15 years for severe asthma, and I was only told that i had this, but not much more, and my drug and inhaler regime has not been changed. I have since learned more about the illness from the BLF website, so I am keeping a note of all the things i need to ask about when i have my next hospital appointment although that's not for another six months.
I understand that bronchiectasis comes under the umbrella of COPD, but neither my GP or the hospital doctors have mentioned this, so a bit confused really.
Lots to learn, I think, especially how to live with bronchiectasis, not suffer from it, and what help is available.
Hi Huffnpuffer my consultant is adamant that Bronchiectasis does not come under the COPD umbrella. I have had lots of good tips from a site called bronchiectasis r us. They are a fab lot!
Hi
Just to jump in to clarify - bronchiectasis is a condition itself and is not classsed as COPD - although we are aware that some GP's lump them together - and also we have spoken to people who are misdiagnosed with COPD when in fact it is bronchiectasis that they have.
Mark
thanks for comments, have had a terrible cough for six months, had ct scan and was diagnosed with bronchiectasis. been given steroid and antibiotic course plus an inhaler, waiting to see specialilst but really frightened and bit down as not sleeping at all because of the coughing and shortage of breath. Will keep looking on here as it is nice to hear that other people know what I am going through
Hi susiequ
I have bronchiectasis. I am 38 years old and have probably had it all my life, but really only started being badly affected by it 12 years ago. It is frightening at first, and of course, every person’s experience of bronchiectasis is different, but I just want to reassure you that I have managed to get on top of it by listening to the doctors and nurses, observing my own body and what it needs, doing exercise that helps me and not doing things that make it worse. It no longer defines me or dictates my life the way it did.
Good luck with your appointments with the specialist – ask lots of questions, and it might be a good idea to take a partner or friend with you as it can be difficult to remember everything the specialist says.
Best wishes
gill6
Gill thank you so much,may I ask you, do you still cough persistantly. it is almost a hacking cough and i rarely get anything up so to speak. I have become a bit withdrawn recently as frightened of getting a coughing fit in company or becoming wheezy. .
hello susiiequ, I've had bronchiectasis all my life (63yrs) and yes, a load of coughing but less now !... because a few years ago I was refered to a lung clinic who gave me a pep device to help clear the lungs (half lung was removed 1972)
I "clear" my lungs 3 times a day, so the rest of the time I do not cof so much now. there is a better device called an acapella which oscillates, I am trying to get one.
also I use saline in my nebuliser, that helps a lot too. usually by late summer I am almost normal, it's the winter that gets me, infections all around and we need extra vit D
You sound like I was before the help from the clinic, gill6 is right, exercise helps a lot. I swim.
Do not worry, with the right help you will be able to reduce or even stop that persistant cough,
keep asking questions and read around on here.
nice to meet you,
su
Our physio who comes to our house from the pulmonary rehabilitation unit is getting us one, they are about £50, but if it works, who cares.
My husband has COPD and recently diagnosed with Bronchiectosis which is making matters much worse. He has had COPD for 8 years now but we used to go on holidays to America etc, up to two years ago when his breathing got worse but we could still go on holiday in England. All that changed in January of this year, he was rushed into hospital with pnemonia and twice more since then, the specialist says he has now got Bronchiectosis on top of COPD and has now put him on oxygen and a nebuliser to try and remove all the gunk that is in his chest. I said 'can't you put a tube down and suck it all out' and he said no because the bronchiectosis is just spewing out this gunk non-stop so he needs to be able to cough it up and get rid of it on a daily basis.
So to have two illnesses that are unrelated are causing him much distress because when your breathing is poor due to COPD itself, having the gunk clogging up your throat is absolutely horrendous.
forgot to add that the lung clinic taught my hubby to do "cupping" on my back while I clear my lungs... like they do with Cystic Fibrosis, that also helps... if he doesn't start foolin about !
su
Thanks Mark, for clarifying , and also to Susiequ for asking the question, the replies have helped me too.
Good luck with your specialist appointment, Susiequ, and please let us know how you get on.
xx
thankj you all so much, I cannot tell you how writing this down and having people who understand has helped me. I hope I dont have to wait too long to see specialist. I live alone so would have to find a good friend to do the cupping !!! . I feel more hopefull now and just want to find out all the details. I was told at first it might be fibrosis so i suppose this is the lesser of the two evils. thanks again x
Hi all ,
I have had bronchiectasis for 54 years and spent years coughing my head off with only benelin linctus to help . when i was 14 and very rebelious i found that smoking actually made my cough productive so i smoked for about 15 yrs ( the first 5 years only had a few a week ) . I was very withdrawn and surly as a child and as i was chided i became a bully for a short while to aleviate the depression .
I am very glad to say that nowadays there are much better meds available and since a proper diagnosis in 1994 i have been much better coughing wise and only really cough a lot if i have a cold or other virus which gives me a chest infection . The PEP or FLUTE ( the oscilating one ) are very useful , also exputext liquifies the sputum and makes it easier to clear , breathing exercises , huffing (instead of coughing which is gentler on the throat etc ) and postural drainage can all help , trial and error for what suits you best . Good luck all xxxx Dinny xxxx
I was diagnosed 18 months ago but they think the damage was done as a baby. I have sarcoidosis as well (double whammy) which has resulted in fibrosis to my lungs so any which way they are a bit knackered. I seem to be luck, I don't cough up much anymore, I nebulise in the mornings and this opens up my airways and allows me to get rid of any gunk, but I think the big help with me has been azithromycin which seems to keep it at bay most of the time. Exercise can help as it makes you use more of your lungs which help expel gunk but I am very conscious that exercise can be very limited or indeed impossible for lots of us on here.
So you are not alone at all.
Marie
x
Hi Suziequ
Yep I do. I think Zube and I are twins - we have both had non cf bronchiectasis since babyhood and both had lung surgery. I expect you will be quite overwhelmed at the moment, but you are certainly not alone sweet.
I had a respiratory consultant in the past whose special interest was resp industrial disease. Now I have a resp consultant whose special interest in cystic fibrosis/bronchiectasis and there is a huge difference. You can check out what his/her special interest is online throuigh your local hospital or Dr. Foster.
You get a little longer for your initial visit, but it is still very important you make a note of all the questions you want to ask.
Don't be alarmed if cons wants to test you for cystic fibrosis, it's routine and is really a process of elimination. It's a good thing as it means you have a very proactive cons. The test is nothing to worry about.
Your consultant should really refer you to a respiratory physiotherapist who will show you different techniques of mucus clearance and gadgets such as the acapella, and together you will find which is best suited to you. Regarding postural draining percussion - although I guess it's helpful if someone does the back - it is by no means essential - you can do it for yourself, if that's what your physio and you decide pd works best for you. I do pd with percussion and use the acapella at the same time. I find it works best for me, possibly because I have been doing it for so long now, but there are many other methods and all bronchs have their own preferences.
You should get a medication treatment plan. You may be prescribed inhalers, but it wouldn't harm to ask if he/she thinks nebulising a bronchodilator and saline would benefit you.
Cons may discuss prophylactic antibiotics - quite often that would be Azithromycin Mon, Wed and Fri or one every day. These antibiotics taken in this way are not a treatment for infection, but many bronchs feel they have less infections whilst taking them.
You might want to ask cons opinion of having a supply of antibiotics at home incase infection starts over the holidays or weekend, if you both feel you are confident at this early stage to know if you have an infection brewing.
Enough I think to digest for now. You can always pm if you want to chat.
Be proactive, excercise and get rid of the gunk!!!!!!!
Hi Mark
Thanks for the clarification. It's been the $65 question since I don't know when. It's not only GPs who lump stuff together. My last cons said as I had a chronic lung disease which was obstructive then of course I had copd. My brill cons now states bronch is indeed a condition in itself. I too have heard a lot recently about peeps who had 'copd' which actually turned out to be bronch.
Hi sweetthing
Really sorry your dh is struggling. One of the symptoms of bronchiectasis is shortness of breath. It is miserable when you have more than one chronic going on. I also have inflamatory arthritis and asthma and it's a pain in the ****.
I was tested for CF! Had to go to children's ward and I got a sticker for being brave! 
Hi huffinpuffer, I have been ill constantly with lung infections, pneumonia and pleurisy for the past 3 yrs after a particularly nasty virus. I had all the usual tests, CT scan, bloods etc and so many xrays I lost count. Finally in Jan my consultant said he was starting from scratch and I underwent every test again. During an unplanned bout of pnuemonia in March the specialist finally said I had brochiectasis. It was a real blow as I had never heard of it and thought I was going to die as I was slowly getting thinner and very weak. I was very sick with my asthma after diagnosis due to doc changing my inhaler, my GP contacted the consultant and he prescribed Azithromycin for 1 week and then Mon Wed and Fri thereafter. I have been really well ever since and cannot believe it will last. I go to see my cons next Wed and now I am afraid he will take me off the Azithromycin and I will return to being ill again. Feeling down. Sorry for having a moan Maximonkey
Awe Marie I didn't get a sticker - they actually owe me loads from when I was little. That's the worst bit about it isn't it seeing the babies with the clingfilm around their little arms and knowing some will be positive. Awe bless.
Hi Maximonkey - Have a moan sweet - we all need to have one now and again. Why do you think cons will take you off Azith when you are doing so well on it? Hope cons doesn't. Please try not to waste your precious energy on worrying 'cos I really don't think it will happen. I can't tolerate Azith unfortunately, but I have heard of many bronchs who have done as well as you on it and that pleases me.
Good luck
XXX
Hi susiequ - I have been treated for asthma for 25 years - things finally got worse, and whaddya know, it's been bronchiectasis all this time. I live in America so the treatment is probably a little different here.
Nobody above mentioned bronchoscopy! This, seems to me, is an essential tool for clearing out your lungs and getting you back to ground zero. It's a technique where they run a saline tube and and endoscope (so they can see) into your lungs and remove all the infection, mucous plugs (which plug the lungs up and make it hard to clear the lungs) and all the detritus that's collected there.
I went to a new doctor - he performed a bronchoscopy, put me on Azith 3 days a week, gave me a month long series of antibiotics to remove (hopefully) an antibiotic-resistant infection and I feel great right now.
I take albuterol/ipratropium inhaler, 4 puffs, 4 times a day, PLUS an albuterol nebulizer 4-5 times a day, PLUS the inhaled saline solution before I go to bed. Generally, I take inhalers/nebulizers as much as I want to.
I usually cough now only for 20 - 30 minutes after going to bed (using postural drainage) - I won't let myself sleep until I feel everything is coughed up.
I exercise hard every second day - I mean for an hour or more of hard breathing - either on my bike or hiking up hills.
One more thing - I wear a Respro Sportsta mask when I exercise outside or do anything dusty. I keep our central heating fan on all day, as it cleans the air in the home. I filter the air in the bedroom all night with a HEPA filter fan.
All this, and I feel it's controlled for now.
I really hope some of this helps - especially the bronchoscopy as a starting point.
Thank you, thank you Waldorff from America - a good explanation of bronchoscopy which as far as I know, we don't get here but many of us have wondered if it was possible. I will copy all the info you left and question my consultant, this will help us all.
I believe America is light years ahead of us here on health .. I am presently reading "A New Health Era" by William Howard Hay MD.. your 1930's Hay System doctor from New York. He tells how to optimise your way of living & digestion, I've been following it for the last 3 yrs and it has made me feel better now at 63yrs than at any time in my life, I will not give it up !
now you have given us this great info.
does your HEPA filter fan make a noise in the night ?
Big thanx, su
Ha, sorry susiequ about the "comment deleted"... had put my reply to Waldorff in wrong place - still learning to use my pc - backward or wat !
Hi susiequ - the HEPA filter/fan I use is made by Oransi and is highly regarded here.
On its lowest setting - the one I use at night - it's just a low white noise. Not loud at all and it's placed about 4 feet from my (rather large 
ears!
I use it on high for a couple of hours before bed..
I've found the really important thing is to get rid of any infection, if possible, then avoid dust and allergens like the plague they are...
I am so pleased the bronchoscopy worked well for you Waldorff. I used to have them years ago when I was a youngster and as I always had a GA I would assume they used a rigid scope - they may not have had flexible scopes in those days. I think they were wanting to know whether the disease had progressed, but not sure as I was just a kid. Not had one for years. I do know bronchs who have had a bronchoscopy in the UK, mainly for diagnostic purposes and some who when quite ill in hospital had their lungs cleaned. They did feel great shortly after, but the feeling is short lived, unless like you they are on good medication, and a great doc and are maticulous with mucus clearance.
Personally I would not opt for one unless my consultant thought it was absolutely necessary. It is a very useful tool and the fact it clears your lungs is a bonus, but it is not without risk, albeit slight.
Really pleased you have such a proactive pulmonary doc who has finally diagnosed you correctly and is giving you the best treatment. You must be very relieved.
XXX
Hi Susieq - i like Mocarey am a member on the Bronchiectasis R Us site. It is brilliant. You dont have to join - you can go an look at the site as a visitor.
It has a drop down menu at the top of the page beneath the main heading, and it covers every subject u can think of concerning Bronc., Medication, exercise, physiotherapy (which is the one most important thing out of anything you should request your doctor to refer you for) as keeping your chest clear of 'gunk' keeps you well.
All members on the site have varying forms of Bronc. some are born with it, some acquire it in later life like myself, some have it in a mild form and some unfortunate people have it seriously, that it impacts on their life. But it is a wonderful site, the humour, friendship and help u will receive is unbelieveable, no disrespect to this wonderful site,but Bronc R Us is the best site on the internet for anyone diagnosed with Bronc. good luck and i hope your situation improves greatly for you
I too love BRUS and have been a member for some time now - different username. Janie is so right there is so much info. support and a bit of fun along the way. What they don't know about bronch is not worth knowing. I like this site too and even after a lifetime of bronch I am open to learning new stuff all the time, but only from these two reputable sites.
XXX
In have joined BRUS and am already finding the support from the members. thank you so much for information and your friendliness
Hi, I have now been diagnosed with COPD by my doctor after having a spirometry test. He says it is moderate, I am actually feeling so much better at moment as the cough has subsided and I am sleeping better, I am using an inhaler four times a day which I think helps. I am stil waiting to see consultant at hospital . My doctor seems to lump COPD and bronchiectasis together so still not certain if I have both. Will keep you posted
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