What lung condition do you (or the pe... - Lung Conditions C...
What lung condition do you (or the person you care for) have?
649 VotersPlease select all that apply:
Under the umbrella term of copd, I have emphysema.
Lynne xx
Ditto! Wish I never lit a cigarette. I guess looking / being cool has it drawbacks. What an idiot I was at 16; today 67 doesn't seem so long of a life time. I stop smoking at 53 , but it wasn't soon enough.
I too was lucky enough to get emphysema. Without it I would never have met the lovely people on here. Bob xx
Diagnosed 15 years ago, and hid my head in the sand up until quite recently. Going for tests at the end of the week to find out why I'm breathless when walking. Fingers crossed it's still only going to be asthma.
I was greedy and ticked two - COPD and Asthma.
I'll see your COPD and Asthma, and raise you a Sarcoidosis. 
ha ha I did same as you COPD and Asthma lol
I too used to hide my head in the sand.
Until I was finding even getting out of bed was making me breathless.
I was diagnosed with severe emphysema,and bronchitis 3 years ago.i can do far more now,than I could then.due,obviously to the meds.
Xx
Kyphoscoliosis (restricted lung capacity)
I have emphysema. and bronchitits,
Yes I have the same and have been advised to use Ventolin(Disc) plus Symbicort from time to time I seem to start a cold but it does not development but I do get a cough and feel bunged up and feel I need to get more air into my lungs...any comments on this Please
Difficult to comment without more info but are you diagnosed with asthma? You need to understand from your GP what he/she is treating you for this will help you and us in giving you more advice. Do this quickly and be assertive with GP to ensure you know about your condition only then can you take control of it. With more info peeps on here are all very helpful and quick to share advice and comments.
Good luck and best wishes.
Emphysema.only.
I have copd somthink else do not no what as i have got ms as well so looking for all New parts 
i also have copd and have had that may scans mri and others and still no answer so back in October more scans, but i am suprised at the percentage of people with copd 79 per cent i thought it would be about 60 percent
I have bronchiectasis, anybody know anything about it?
hi tatteka - yes some of us have had this a long time (some since birth) and do know quite a lot - either post a question or if you don't want to do that feel free to pm me and I'll help if I can. Or phone the helpline 03000 030 555
love
ff x
bronchiectasis and copd right lung, diag. 2 years ago, very severe
just out of hospital after 4th exacerbation in last 3 months.
Ihave copd will not let it rule me work round it another stage of life just glad to be able
to email you all love you god blress
saltaire
i have copd took me a year to get sorted had heart bypass 15 months ago only 30% of heart was working . i was breathless before but told lungs clear 1 month ago went to drs for something else was pluse going mad in tummy all was fine after tests i told her about being breathless then she ordered lung test hence got copd 1st time saw this dr all others took no notice, 2 months after bypass i had one side chest swelled up never got sorted still happens sometimes anyway this dr said to me soliders get that running with backpacks where straps rub, AS IF1 I COULD RUN LIKE THAT AFTER HEART BYPASS REGARDS SIMON123
I have copd,and am waiting for results of CAT scan last week.gp thinks I also have ipf ???
I have COPD emphysema with secondary Polycythemia .
I have COPD (bronchiectasis) I was diagnosed 10 years ago its bad in left lung, when I found out I stopped smoking and drinking alcohol, I know its hard to do but I feel it has given me a better chance with the medication of living longer,
lyndene bronchiectasis does not come under the umbrells of copd sweet - it is a separate condition.
Love cx
Bronchiectasis is among a group of lung diseases classified as chronic obstructive pulmonary disease or COPD. It is characterized by an abnormal stretching and enlargement of the bronchi and bronchioles, the larger airways of the lungs. I have always been told it comes under the COPD umbrella, as you can see from order peoples comments , lyndene
Bronchiectasis is a condition in it's own right - it isn't classed as COPD - although it is often mistakenly diagnosed as COPD.
I think - although I will need to check - that either NICE or the BTS are working on guidelines for bronchiectasis.
I think that I have worded it wrong, I have Bronchiectasis and also COPD its that long ago I seem to be getting mixed up, thanks for pointing this out.
Obliterative Bronchiolitis.
Anybody out there got it or even heard of it?!
Im due to have a vats biopsy to check if i have got oblitierative bronchiolitis, will keep you informed, How long have you had it & have you been diagnosed with anythink else?
hi my son has severe bronciolitis obliterans he got it just before he was 3 years old and he is now 23 years old.He has a lung function of just below 2o%.We go to Newcastle freemans hospital for double lung transplant assesement twice yearly.how are you ?.
I got this 6 years ago - out of nowhere really. Currently lung function is around 40% but I can feel it slowly getting worse. That said, this winter wasn't too bad.
That's terrible luck for your son. I really hope he is lucky enough to get the transplant he needs.
Hi l have bronchiolitis. Not heard of obliteractive so unsure. My consultant was not sure as to what l had as some of my tests did not add up. So he sent my notes to Brompton lung and heart hosp in London, and they came back with just bronchiolitis. Have u looked up on web.
I have COPD for about 10 years, knew something was wrong but hid my breathlessness, eventually went to see my GP put on medication which helped. 2 years ago I had an infection over Christmas, didn't want to miss being with my family so ignored it, was rushed into hospital just after Christmas and came out on oxygen. If only I had done something about it earlier.
Copd for me, is moderate emphysema with a sprinkling of asthma for good measure.
I have been told that I have P/F 18 month's ago by my cardiologist ! this has been caused by radiotherapy I had in my 30's , was told at the end of my treatment that my lung's had been caught in in the radio field at the end of my chemo and radiotherapy ! what can I say if I would not have had the treatment I would not be here now ! just started some steroids today as my breathing is getting quite bad and waiting to see lung specialist asap ! but not sure what they can do !!!! <3
I have copd 10 yrs also bronchiectasis all my life
I've found this site a huge support- really lovely people.
You don't feel so alone with it!!
Lots of love xxx
Ive only got emphysema
Hi Guys
I was DX last month with COPD I also have Lupus Sjogren's Antiphospholipid Syndrome and vascualar disease of the brain also looking after my darling hubby who has Heart failure and Kidney failure we are Team Reid and any life is sweet x
I had lung cancer and in 2006 went to Papworth for a left lobectomy, after a 5 year follow-up they discharged me. So now I reckon I have been lucky to just have COPD and asthma.
I have COPD, Asthma & Bronchiectasis.
I have Hypersensitivity Neaumonitis calling with severe Pulmonary Fibrosis I was diagnosed two years ago Doctors have never discussed how long I have left at the age of 58 I would guess not to long but take each new day as it comes
I was breathless for a long time before I knew I had COPD. I thought it was me being out of condition. Now when I get a chest infection I am knocked out with the SOB+++
I haven't smoked for 15 years but I think the damage was done when Iwas a twenty a day woman. Right now I am trying to put the last attack behind me and get fitter for my 67 years of age
What Can A Say If It Was Lotto Or Raffle I Would Of Won
Is That A Good Thing Or Bad 
bronchiectasis and copd,not too good at the moment.
My sister Theresa had what they called copd,stupidly she kept having sly ciggies after being diagnosed.Sadly she past away just b4 xmas (47) of pnumonia.I am asthmatic myself smoked like a lemon for 27 year,i was always trying to stop smoking with NRT. will power etc to no avail.Not sure if it was her passing or the alan carr easy way to quit book,but i have now stopped without NRT or anything else,but it really did scare me watching her die and her daughter kieley go through hell,but the funny thing is ,is that i dont crave or miss them after 27 years on them its mad how my head has now decided to dislike smoking even people smoking in the street annoys me,good luck to all on here regards Sean
I was also greedy and ticked two on behalf of Pete who I care for. He has sarcoidosis and copd (bronchitis). xx
COPD (emphysema) plus Heart Failure (Triple by pass) and Diabetes Type 2 (Insulin dependant).
Regards
David
I to have c o p d and Bronchiectasis for 7 years left lung badly invected .
Bring up blood some times when have infections. Dose any one else do this?
I have copd 
they have not said what i have, they just said here blow this up as hard and long as you can, would't mind but I have not won the goldfish, Ho they did say come back next year and have another try which was kind of them.
I am so sorry I have just burst out laughing I entered my answers then saw the word VOTE almost as if we were going to vote for the best illness. The survey should show some interesting results
I too was greedy and had to options being copd and asthma
Thank you to other sufferers for sharing their experiences x
Bronchiectasis and asthma, half left lung removed an amazing 42 years ago years ago. Having bronchiectasis can make me feel "left out" of medical help, few people seem to know what it is, even my GP surgery have refused in the recent past to give me a flue jab... they said it's not copd, so you don't qualify for a flue jab !!
I did get one though after speaking to my lung specialist nurse.
OMG doesn't it just make you despair! One year my surgery ran out and my gp said he would get me one if he had to beg, borrow or steel. As you know in the same boat as you in all medical respects - just unbelievable. Just seen from our 'other site' a doc sent for a ambulance and when they asked for the dx he told them postural drainage. Lesson in bronchiectasis - be prepared to advocate for yourself.
Love and good to see you posting again.
Love cx
thanx c, despair, isn't it just, think I'll come up there to yours...aye up lass !
You are most welcome anytime up t' north Our igloos have just melted and we are gonna move in t' tee pees just as soon as wi can get whipets out..................
love as always
cx
ha, I'll bring the Somerset cider we can neb it, that'l do the germs!
Severe allergic asthma all my life, emphysema/COPD for about 10 years Someone else out there must have aspergillosis, my nice fungus cavities etc. They don't call me 'furry balls' for nothing!!
I am very sorry to hear about your aspergillosis. I had a really bad chest infection in February with a horrendously tickly throat and cough which was the worst I have ever known. A doctor thought after a test I might have mild COPD and the cough has persisted even after antibiotics though not so badly, but it makes me short of breath as well. A few months ago there was a flood inside the wall of my kitchen caused by the outside porch overflow which has caused black mould all round the walls in the area and even inside my food cupboards, could even have got into the freezer. I am currently wondering whether I may have ingested mould- what tests did you have, and what treatment do you receive?
Hi I've recently been tested for aspergillis. This was because it grew on a sputum test. I had to do 2 more 'samples' which came back positive. Then referred (finally) to Pulmonary specialist. There I had skin prick tests (aspergillis and mould came up) also bloods were taken to test for antibodies to aspergillis (I think) - the cons said that it was negative and I don't have aspergillis.
I would so love a diagnosis .
I would so
I too have emphysema loosely classed as copd and asthma
I guess I'm just greedy, i ticked three...... asthma, bronchiectasis and COPD.
So pleased I found this site when I so desperately needed some reassurance , thank you everyone. xx
I ticked 2, bronchiectasis and asthma although it's 'likely asthma'!!
i have emphysema and ipf
Emphysema and bronchiecstasis
i have emphysema and fibrosis of the lungs ! diagnosed about 5 years ago am 43 now ! i also have major clubbing of my fingers and toes! my hands look like a gekos lol on seretide 500 spiriva ventolin and home oxygen !
First it was asthma (30 years) then nurse said it was COPD (four years, but "don't worry, it'll just cost you a bit more to travel") then, after I requested a bit more attention, bronchiectasis/IPF after a consultant ordered a scan. - Jakk
The doctors seem to think I may have mild COPD after a very nasty chest infection in February, treated with antibiotics in the third week. It cleared up a bit, but I'm now left with persistent cough and some shortness of breath at times. I had a test for COPD at the time, which I think the doctor thought was inconclusive, but will have another in mid May. I smoked for about 30 years, before giving up in 1999, and have never had a cough since, so this is a bit of a shock- however, obviously there must have been damage to my lungs because of the smoking habit. I saw a doctor again yesterday and later had a chest X-ray done- I get the result on Friday, but all this is very worrying to me; I also have a history of heart attack, I have a heart condition- two heart attacks, 1st 2001, second August 2012. I'm 62, both managed with drugs- a different cocktail since the second.
Bronciectasis and asthma
Ditto! Not brilliant at the mo due to a virus, but so much better generally since I started nebulising last October.
emphysema diagnosed 6 yrs ago through a scan
that i had done for a bloodclot on my lung,otherwise i
probally wouldnt have known that i had this condition.
I have very severe Emphysema (worst luck! but I wish the very best for all fellow suffers)
I have chronic bronchitis emphysema & pulmonary fibrosis
I suppose these illnesses come under the umbrella of copd
i have had Pulmonary Fibrosis since 2008, my father died with it, about 3 weeks ago i started having shortness of breath, and now im house ridden, cant breathe, cant walk about, its frightening because it came on so quick, we are suppose to be going on holiday in 4 weeks, the way i am i cant go, my partner is working and doing everything at home, just want to be able to walk about and breathe a bit easier.
I am suffering from the most awful tickly cough/breathlessness/sore throat which is being made worse by my diagnosis of mild COPD towards the end of last year. My GP at the time advised me to stop smoking - she said each time I get a cough/chest infection it will get worse until I won't be able to get out of a chair without being breathless. I just didn't feel ready to "quit the weed" then but after this bout I have definitely "given up" - My GP was right - I know the damage has been done but hopefully these bouts of coughing and breathlessness will not get as bad if I carry on.
There should be a Pulmonary Fibrosis (including iPF) option!!! Just shows how BLF not counting all of us out there with Pulmonary Fibrosis!
Interstitial Lung Disease (ILD) is an umberella term for a range of similar conditions - all that have scarring - fibrosis or pulmonary fibrosis are terms used by some doctors to describe this scarring. So pulmonary fibrosis is not a condition - IPF is the most common condition under the ILD umbrella - there are lots of other less common conditions as well as IPF.
So IPF was listed as it is the most common condition of that type - there isn't enough room to include them all - but that doesn't mean the BLF is ignoring them.
Mark
So why not ask how many people have pulmonary fibrosis in the same way as asking who has COPD?
Because pulmonary fibrosis isn't a condition - it would be like asking "who gets a chest infection?" - it wouldn't tell us what lung condition they had.
"Pulmonary fibrosis/scarring" is found in IPF, asbestosis, NSIP, COP, DIP etc.
Mark
I have emphysema
Have emphysema diagonised 1998, have been very well until recemtly now on ambulatory oxygen .
I have Emphysema
I have had COPD for nine years but i try not to let it get me down,and still try to play bowls,i sit down when its not my turn, also i love my gardenand try to do a bit now and again,
I have emphysema
I could have ticked two as my original diagnosis was COPD/asthma.I have been told it's of an Emphysemic nature rather than Bronchitisis(not sure of the spelling)Like others above I still keep as active as possible as well as having arthritis which also limits mobility, use it or loose it is my motto.
I have ideopathic Pulmonary fibrosis Im 47 male live in hull married 3 kids.
And still work full time in the kitchen manufacturing industry but not sure how much longer I can carry on. I have my first pre transplant assessment appointment on the 2nd may fingers crossed.
I found out i had COPD when i went to my GP's with tightness in the chest and breathing problems. He sent me first for an ECG and when that came back OK. He then sent me for a treadmill test where i collapsed after just 48 seconds, I was admitted straight away into hospital with possible blood clots on the lungs, it was after a 2 week stay in hospital that they found out i had COPD.
I have emphysema, my mother had emphysema, my dad has chronic bronchitis, and my sister has copd but doesnt know which one as her gp hasnt refered her to hospital! oh and my grandfather had emphysema and TB when I was born back in 1969!
Consultant I saw at hospital has said that some TB scarring showed up on my CT scan but Ive never had a bad chest at all until 2yrs ago when I was diagnosed!
Awaiting absolute confirmation early May but currently consultant pretty sure I have Ideopathic pulmonary fibrosis (IPF) and Ideopathic pleuro-parenchymal fibro-elastosis (IPPFE) - even the specialist hospitals don't know much about this one!
Emphysema, broncalitis & pleral asbestos plaques. (and i cant spell) stage 4
Such a good idea that BLF conducts polls from time to time which enables all of us, "Lung Sufferers", to exchange views and help each other!! Brilliant.
I was surprised that the poll field "other" did not enable respondent to write down condition. I see quite a few people have aspergillosis [so do I, in addition to bronchiectasis].
Given that GPs on the whole have problems diagnosing anyone presenting with severe breathlessness [the confusion between COPD and bronchiectasis is really unbelievable in this day and age...] patients need access to good information on the "zillions" of different conditions. BLF does a wonderful job, but other websites place too much emphasis on COPD and ignore other conditions. The Shared Decision patient aids on NHS Right Care website, for instance, are excellent but again are limited to COPD. Community services where I live are limited to COPD, so many people do not access Pulmonary Rehab services. As for the flu vaccine as one respondent here mentioned, I have had the same problem when I was younger and had to get my overworked hospital chest consultant to write to GP surgery and demand I get the flu vaccine...
I have complained to NICE for issuing guidelines ONLY ON COPD and I think BLF has also made some kind of representation.
Finally, if anyone has problems keeping track of their meds. please be advised that NHS My Medication Passport is now out, free of charge: ask your pharmacist, your GP surgery, your hospital doctors or your dentist to get one for you,
All information and order form at : goo.gl/5YFfk
Let's keep up this good dialogue
sunny thoughts and encouragements to everyone!
My husband was told last week after an xray he is in the early stages of Emphysema. He was told by the GP to make an appointment with the nurse who would run some breathing tests on him and that appointment is not for another 10 days. He has not been given anything to help till he has seen the nurse, Is this the normal management for Emphysema as he is struggling at the moment and just has his usual inhalers, It is very frustrating as we both feel he has just been left to wait for this appointment, Any advice would really be appreciated Thank you!
I was diagnosed with Sarcoidosis 43years ago, then fibrosis, then bronchiectasis and finally aspergillus.
I have COPD and Asthma.
I have Bronchiectosis, Asthma and carry cystic fibrosis 508. I am a carer for my disabled husband and 4 remaining kids at home so I am constantly exhausted but at least I know what is up with me unlike those poor peeps who still are waiting their diagnosis
I have copd, asthma,emphysema, severe narrow airways, vocal chord dysfunction. I'm a bit greasy I think.
I meant gready ha ha not greasy. X
I meant gready ha ha not greasy. X
I have been told I have lung disease but they do not know what it is - only what it isn't. Tired and breathless. Although on asthma medication, I don't have asthma. Your guess is as good as mine!
I have emphysema and asthma, and allergic to all the usual things that come with asthma, hay fever, cats, dogs, etc.....
I have emphysema and asthma, and allergic to all the usual things that come with asthma, hay fever, cats, dogs, etc.....
Hi there I have Emphysema ( copd)diagnosed at 44,I also have Dystymia (similar to bi-polar but your lows last a lot longer),a heart condition ( only found out about it because I had a huge heart attack),also suffer from severe stress and anxiety, but apart from that I'm not doing too bad thanks lol
Emphysema, Dystymia, severe stress and anxiety, heart condition@45yrs old.
Bronchiectasis 7 asthma for me.
Looks like I missed a tick only clicked COPD morning fellow suffers
I to have emphysema lucky me
I have Bronchieactasis and emphesymia caused by having T.B. when a child. only found out real reason when I had to see a specialist in Belfast. I didn't know I had either until almost 3 years ago, until I woke one morning, couldn't breather and legs like elephant ones, GP came straight away put me on o2 16 hours a day and puffers, then emergency admit to hospital. seems lots of people have Bronc. bug and never know and live to be 100 lol - anyhow I got pluresy and pneumonia a few years ago and it activated Bronc bug, so for 7 years I was unaware of damage being done to my body, cos of delay in diagnosis, I now have heart failure, pulmonary hypertension, take Cloidogeral to thin blood, as I had a heart attack when 1st diagnosed. use o2 for ambulatory purpose, take furisomide cos fluid build up is dangerous for me, oh don't smoke either, haven't since a teenager over 50 yrs ago, then 5 to 10 a day. still dosent help tho have had to change lifestyle, whereas I used to hop in car daily, I now rely on family and friends to take me to appointments etc. do all shopping on line - brilliant system. cant walk more than 1/4 mile at time, cant babysit new grandchild bath or carry him as I stumble a lot. wont ever improve, but have fantastic family, friends and neighbours who are wonderful in helping me. I am so lucky, at least I was married, had 4 children, have 4 grandchildren, have travelled all over world, when some people with same condition, very young people will never get to have or do these things, my heart goes out to them, then I really appreciate all the wonderful years I have had. even now, I have met so many new people since I became ill, have had to change lifestyle drastically, but love life and enjoy it as much as I can. thank you for reading this Janie xxxx love this site u are all so caring and helpful, thank you again xxxxxx
I've asthma when younger, told I have copd,that's it no more news from docs,nurses,as they are not trained in copd,so I've not had any proper Diagnosis ,could not get to hospital app.as I was house bound ,could not walk out to the car ,told the nurses I was house bound ,but unfortunately it fell on deaf ears. Ignored me,still do,so I am changing the docs surgery to one that does have a nurse that can help me not go to hospital every time I get ill.because it's the hospital that changes my inhalers and gives me the correct medicine to date,I still feel I'm not in control of my breathing ,so I know it has to be changed again,if I haven't got access to medicine I need in future,back to hospital,
smoked for 40 years- emphysema
Emphysema
I have chronic fibrosis EAA
My lung condition is IPF or idiopathic (unknown cause) pulmonary fibrosis. It was diagnosed and confirmed after extensive tests in March 2015. I had tended to ignore the coughing and sob as I have heart and kidney probs as well as diabetes and it was these co-morbidities that I thought was behind the lung pain etc. then my G.P. Decided there was something else going on. That is my story, what about yours?
COPD MY FAULT SOMED FOR ABOUT 50 YEARS STOPPED WHEN TOLD HEART BYPASS THAT WAS IN 2011 NOT TOUCHED CIG SINCE REGARDS SIMON
I have very brittle asthma and my husband has interstitial pulmonary fibrosis diagnosed last year. I'm 64 and my husband is 71.
