When you were diagnosed with a lung condition, were you given enough information about your condition to read at home?

153 Replies

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  • Don't forget to contact the BLF Helpline if you need any advice on your condition. We're here to help - 03000 030 555 (Mon-Fri 9am - 5pm)

    Thanks

    Ben

  • I have COPD and really don't know much about it other than I really struggle with my breathing. A lot of the medical profession treat people who have this disease with disdain. I feel as if they don't care because we either smoke or have smoked so it's our own fault.

  • I feel the same. Left in a&e for hours with no treatment.

  • I went to my local gp arranged for chest xray and bloods , had lung function tests at the gp was told I had lungs of a hundred and seven year old and was given my normal inhalers and sent away! !!! I went on holiday a few weeks later to turkey heard about a well mans test which gives u a full body mot ok had to pay but not outlandish fee , sure the chest specialist there to had the same tests as in uk and was told I had copd had it all explained to me given new inhalers why oh why could this not happen in the uk??? have had asthma for about 15 years which has been getting worse seen doctors to no avail ps I have never smoked but lived and worked in industrial areas when in my childhood eas baf conditions as I am now seventy

  • Exactly.I can I can live quite well without their condescending attitudes. I did smoke however I quit 5 years before I one day got up and couldn't breathe. That was my first red flag, symptom? I had no problems doing anything breathing laughing swimming underwater nothing nothing nothing until that day. so surprise surprise. I remember learning in junior high about something about long deceased. We were told that within 20 minutes of quitting smoking your lungs start to repair. So I question quitting 5 years before I had any symptoms of emphysema, a specific diagnosis I had done on my own, certainly didn't work for me. I have been diagnosed with centrilobular emphysema... a rather specific diagnosis wouldn't you say.? The first pulmo doctor was actually acting offended that I had that test done. Raise your voice and questioned who did it? I told her I had it done so I would know exactly what was wrong with me because if I was going to try to fix something I better know. That was the last time I saw her.

  • forgot forgot to mention that I'm in stage 3 with an fev of 46. That was two and a half years ago. I have not had a spirometry test in the meantime. I feel like I'm probably about the same. I never lies a small amount of Albuterol daily. Half of aisle in the morning and the other half at night. I do not do it five or six times a day. I use a ventolin Puffer one two three times a day one puff each time. I have never taken to Pluff at a time. I also do prednisone 80 grams one or two days about every 3 or 4 weeks so not very often. When I feel the crunch in my chest or hear that wheezes when I take it. Again not very often. I also nebulize DMSO and colloidal silver I started DMSO at Christmas time. I have been nebulizing colloidal silver daily for about 2 years now. First cold I had lasted about 2 days 3 weeks ago. So I think that's wonderful. I will not take antibiotics and left I'm almost dead. I hate the way as soon as you go to the doctor with a little sniffle here fed a ton of antibiotics was knocked the hell out of everything else as well. They always fail to tell you to use probiotics after the antibiotics. And they are doctors? I hate the misinformation or the lack of information that we get. It saddens me greatly.

  • thank you I may do that as I have been left in the dark . Worried and upset to get emphysema and never smoked

  • Ben... have you looked at or do you know anything about amniotic stem cell procedure for emphysema?

    Hapmar at aol

  • Hapmar23 at aol.com. Spell check sometimes sucks

  • I have c.o.p.d and i still don't understand it i wasn't given any information at all

  • You have Emphysema/ Goodbye.

  • I have bronchiolitis obliterans and rang blf and the nurse on the phone couldn't give me any information really either (rang last year!)

  • I was diagnosed with the same Broncholitis Obliterans over 6 years ago and the only info I can find is on the net. Hospitals and even consultants have been next to useless with any info. Good luck to you

    Laurenmerrin_xo

  • I was given nothing and understood even less. I'm now stage four and have learnt from my own research. Last year I was finally given a folder with info. Would've helped so much before. Bit late now to be given leaflets about the start...

  • (idon't understand that chart really).

    I have learned a lot more from books ,since diagnosis,that I feel should have been included in advice I was given.

  • I was given an inhaler to use but no information.

  • Same here, it's so sad but it would have been so nice if I was better informed from the very beginning.

  • same here

  • I originally had asthma at 8 weeks old (59 yrs ago). I apparently now have well controlled asthma but have COPD because if permanent damage done. I don't really understand why or the long term prognosis. I try and keep myself as healthy as possible.

  • Had to find out 90% info online still do!

  • Like other patients I assume, I was first diagnosed [with aspergillosis] during hospitalisation for a non related condition. Ward team gathered background material to inform all those involved in my care and also de facto myself since I could read the content in my medical records, which were in paper form in those days...So basically, the process was very efficient.

  • Everything I've learnt about my condition I've learnt from people on here if I'd found this site 3 years ago I'd still be mild not stage 3 severe emphysema.

  • I went away from doctors after being told I had I P F quite relieved I didn't have cancer only to find after looking on the Internet what I had got was worse than cancer.

  • I know how you felt. I recently saw consultant after being discharged a few years ago with no treatment as scans showed no change really struggling now and as I also have heart condition when ringong doctor to say unwell told to ring 999 which I hate doing as another full day in a an e or ambulatory a and e sitting on a chair for numbers of hours waiting for blood test results. Doctors or nurses don't know what ipf is. Sent home again feeling really bad but told all blood checks blood pressure etc ok. My consultant was one of doctors overseeing a ae ambulatory and had told doctor that she was quite happy with her diagnosis of wait 4 months for appointment to see if breathingdrops another 11 per cent and thenhopefully would be able give me a tablet which ma y slow it down could have given me steroids but didn't want to as wanted to see if deterioration continued without them. I am at a loss to understand how some clinics have respiratory teams. I wasgivenname of nurse but always only answering machine does ring back but no real information on what I can do. makes me feel I am wasting people's times and just have to grin and bear it for 4 months.

  • Complain to health authorities and change your GP

  • Oh my God I'm so sorry, how do you cope with it from day-to-day? Is there different stages to this ipf,. I was diagnosed with pneumonia two years in a row so the doctor test me for ipf and came back negative I was so grateful that was the first time I even heard of it, I had to wait a week for the results of the test and that week well I was depressed as well as full of anxiety the entire time... if you ever want to talk reach out to me and I'm sure there's others that's on Hu would love to be there for you God bless and take care of yourself

  • I was not at all surprised to see what the majority vote was.

    From starting to suffer chest pains and breathlessness I constantly told my gp,s and my rheumatologist how much these symptoms affected me but, it took 3 year's before a locum doctor sent me to see a lung consultant for tests. He was really good and within 4 weeks I was diagnosed with pulmonary fibrosis, he was willing to accept me at his duel clinic in Nottingham which was great as my rheumatologist isn't the best and I feel he should have arranged lung tests as my PF is caused by rheumatoid nodules and scaring and my symptoms were spot on, like most people who have RA I had no idea this disease can affect the whole of your body.

    Anyway Nottingham refused to care for me as I live on the border with Leicester and they didnt want to finance my meds. So I see a lung consultant in glenfield Leicester my rheumatologist in Loughborough where my 3 monthly appointments are constantly being extendered. The lung consultant is very nice but I still dont get much information from him though I see him every 3month's as my lungs have deteriorated very quickly since being diagnosed 20 month's ago.I'm due to see him early March but a recent letter sent to my gp ( she was asking for some information ) stated " in answer to your query to be honest your guess is as good as mine " . Where an earth do you go from there !

    Sorry for a long post but I've not been well the last few day's and a visit to my gp this morning resulted in her saying, your chest is not as clear as it should be but it's not as bad as it was at Xmas also told me that my chest pain was wind and recommended polos . So seeing the survey and feeling I have little medical support I needed to get this off my chest. Linda x

  • I so agree that I, like most people had no idea that RA could cause pulmonary fibrosis. I had already been taking methotrexate for 4 years without being told that it could exacerbate incipient PF. I regret that very much. Anyway, I just wish I could spread the word about the RA PF methotrexate connections so that this horrible disease doesn't affect more people.

  • Hi Phyll,

    I too have RA and was not told anything about methotrexate being a cause of my PF. I was diagnosed 14months ago with the PF but if I had then be told to stop the methotrexate I don't think my PF would be as bad as it is now. My lung capacity has dropped dramatically over the last 6 months, I am now on 24hr O2 and struggle to do the easiest of daily tasks.

    I went for a 2nd opinion and it was this PF specialist that told me to stop taking it, but I think it was good advice issued too late.

    Feel really angry about it.

  • I was told by my rheumy consultant that methotrexate one of the side effects could be damage to the lungs. So I refused it when I was offered it for my psoriatic arthritis. As my lungs were already damaged due to copd

  • So it seems. There is lots of research for lu ng cancer. Does any of this help us?

  • Told I had Asthma then moved to a new area and saw my doctor, next thing I know I am being called in for a COPD review. questioned this and told my treatment and symptoms were COPD and that was it, no info nothing. Still confused and unsure what I really have.

  • I was left with no information regarding COPD or even what it was. I went hime and researched it on the internet which was the worse thing to do. I was convinced I had about 5 yrs left!

  • @Jehinch Keep looking, I'm sure you will find some really useful info. I think that was how I found this site!

  • Finding new info all the time now and this site is very good. Glad I found it

  • Like lot of others a got nout of my doctors re lung condition.

    Well guess thats why i searched internet looking for answers AND thats when i found blf site.

  • I spent 5 minutes with the consultant who showed me a X-Ray which I didn't understand, handed me a prescription for an inhaler and that was that. Nurse at GPS wasn't that much help either. Saw new nurse two weeks ago who was much more helpful.

  • I had a few diognosis done before I was told I had a Fom of asthma and then they concluded that it must be bronchiexsist after more tests were done and an admit ion to hospital for a couple of days with I v anti biotic

  • 7 years on and I still have to drag any info out of the medical pros......

  • I was told by a letter because my rheumatology consultant sent me for ct scan because I was always breathless and coughing and in pain. He thought was a reaction to methotrexate. Then letter came saying scan shows signs of emyhsyma and it's not because of methotrexate. Shocked when I opened the letter..

  • One of the side effects with methotrexate is damage to the lungs. That is why I refused it when my rheumy consultant wanted me to take them for my psoriatic arthritis. As I already have damaged lungs with having COPD and didn't want to make my lung any worse.

  • I was ill, on the sofa, at home and I thought I had flu and possibly bronchitis. I couldn't smoke, although I kept trying! Doctor came round and checked me over and then told me I had emphysema. Next Doctor who saw me (in the practice) told me not to worry too much as I would be in a wheel chair with an oxygen bottle within 6 years. That was over 11 years ago and I ride a motorcycle (1000cc) and go to the gym 3x a week. I am better and fitter now than I was then. With many thanks to the pulmonary rehabilitation people. And I am 70 years old.

  • Well done jarrow

    I too go to the gym 5 to 6 times a week and with the research I have done it tells me that with copd, excercise is the key, my copd nurse also said the same thing, so carry on with the gym work it really does slow the condition down.

  • I dont really write on here but always read what others have written and ive learnt so much more about it from this site. So glad I fount it .

  • I was diagnosed with Asthma in 96........had a bad asthma attack in 97 in which I was hospitalized & put on a nebulizer, had steroids & a hydro cortisone injection & given inhalators but I had no idea what was wrong or what was happening........I just thought I can't breathe & this is not right for me.........only when they was testing my lung function 20 years later did they tell me what was wrong.......

  • Although I wasn't given any info, I was old enough to ask so blame can't be pointed in one direction. It was a case you are now on these puffers and suckers and you will see someone in 6 months. A few months down the road I started seeing the nurse at my medical centre (been annually ever since 2004) and she was very helpful and still is.

  • I stopped smoking over 2years ago I was told I have copd that was it I have been in and out of hospital up the docs with shortness of breath and now it as got worst I go up the docs but nothing

  • In the 15+ years I've had COPD (now at Gold Stage4 & on O2 24/7...in all that time is

    'Give up smoking...pack in the fags' ....which really means it's your own fault, so don't expect any help from us...apart from constantly asking you if 'you gave up the fags'!!

    The other one is

    "Well you know your condition better than we do".....which really means -so don't expect us to explain any of it, here's an inhaler come back and see us sometime.

    I 'm from the '60s' generation, when it was socially 'unacceptable' NOT to smoke. A none smoker wasn't 'cool man'!

    Today I suppose it's comparable to NOT owning a mobile phone and NOT taking 200 selfies a day ...your mates step back, go into a huddle, come out turn to you and say "Your're kinda weird" ..laugh and walk away, forcing you to go out buy a mobile & take loads of selfies!!

    My own COPD is work related, not Fag related. But it has been assumed, even by my new Specialist, that I know everything there is to know about my condition, simply because I'm still alive after all these years, and understand his 'medical' speak .

    Yes I do know an incredible amount about COPD & Bronchiectasis ..but like most here I am self taught, and still alive because I sought knowledge about my condition. Remember I had this before the advent of the internet, when the library was my friend, however I will say ...Thank God for Google!

    While I applaud the idea of giving COPDers leaflets, it would be good if there was actually some type of information in them, not just 'join a breath-easy group near you'. I only know that because a lady showed me her 'leaflet'...I'm still waiting for mine.

    as the saying goes

    "Live long and prosper" my friends ;-)

  • i was diagnosed with bronchectesis and told its not life threatening if you want more information google it!!

  • I too was diagnosed wiith bronchectesis. Nobody seems to have heard of it. Its the weakness and fatigue thzts the worst. Told to loose weight which would help. I van hardly walk so not much ex ercise.

  • Pardon me Mauwycliffe but having lived in a wheelchair since 83 being able to walk has Nothing to do with exercise for the relief of Bronchiectasis. You can exercise your lungs very well from a seate position.

    Search Youtube for lung exercises or get the data sheet from BLF

    Compared to COPD the number of Bronchiectasis sufferers is very much smaller. So you are bound to hear or read anywhere new as much about it. You can get email to keep you updated. bronchiectasisnewstoday.com

    Kind regards, Rib

  • Thanks for the info

  • Like so many people I was told I had emphysema, given an inhaler, and basically told that was all that could be done for me. I learnt more form the BLF leaflets, but still have not been able to access pulmonary rehab. despite asking my GP about it, so don't know if I would benefit or not. I feel like I was left to sink or swim!

  • I've not even been offered any rehab and from what I can make out you only get it if you've been in hospital. Thought everyone with COPD should get it

  • It was about 15 years and I wasn't given anything. I think it would be better now (really).

  • No idea what you are voting for.

  • I was sent to a consultant and don't think he explained much at that point - later he was great. No-one mentioned copd or emphysema so I assumed I had a worsening of the asthma I'd had for years. Then my GP called it codp - of course he didnt but that was what i remembered. I came home and googled and DrGoogle rearranged the letters and explained. Awful shock.

  • Do you have any information sheets that I can download

  • Hi Fenfisher

    Yes there's lots of information leaflets you can download or order from our website here: shop.blf.org.uk/collections...

    Kind regards,

    Ben

  • I clicked on the link & it's unavailable...

  • Anything on broncholitis Obliterans please ????

  • It took them 4 years to acknowledge I had lung conditions

  • I had never heard of my condition ABPA until diagnosed and was not told about exaberations and still my condition is not managed except for steroids when I get an attack. I was diagnosed in 2008 and only now since moving house and changing GPs have I been referred back to respiratory Doctor for more investigations. Have recently had brocopsocopy and lung wash, which has helped. Still awaiting results of cultures from lung wash. Rang hospital to chase appointment, was told shortage of respiratory doctors and volume of patients could be a summer appointment. Good job my immune system is waking up and dealing with the mold spore problem and I am feeling better after taking steroids for three months. I have never been given anti fungal medication, I understand that is the treatment. I have learned about ABPA myself and try to help myself every way I can. I feel my ABPA has never been managed properly and I am just left to get on with it until my immune sysytem wakes up and does its job. It is a hard condition to live with. It has just wiped out six months of my life where I cannot get around due to severe breathlessness, but things are finally improving. But until the next attack.

  • 1959 is a long time ago. No written info, but a lot more time and explanation from consultants

  • I was told I had C.O.P.D & had lungs of a hundred year old man ten years ago when I was fifty & when I asked what I should do I was told to live a healthy life style then I found out on line that a lot of the foods I was eating was bad for me so its been trial and error

  • I wasn't at first by anyone only person did was my consulatant but it was to late and only by him at 09 then at 11 he retired and I was alone till it got so worse that only option is death or transplant

    I'm 36 years old and i have asthma broncecictsis respiratory type2 copd I'm on Bibep nublizer and oxygen can't go anywhere cause of oxygen and very weak waiting for transplant and mostly my day goes by haveing medication I wasn't given any of these info what are these illness and what can lead to it how long I have etc and only person who gave he left if I knew all this or had that info things could have been different may be???

    03000030555! Take care by from foxy79

  • as far as i know i was born with Bronchiectasis and that was 78 years ago, there was no antibiotics in my very younger years i was given M and B tablets and i remember very distinctly they give me terrible hallucinations, like giant spiders climbing up the walls, but i am still here even though a bit worse for wear.

  • Hello Friendly. Did you have whopping cough as a young child? A lot of people are thought to have contracted Bronchiectasis from this route. Three different Respiratory Consultants at 3 different hospitals have expressed this opinion whilst I have been an in patient for unconnected ailments.

    Kind regards, Rib

  • i did have measles and whooping cough at a very young age under three i think, later on i went in hospital (pendelbury childrens hospital) where they did tests(as xrays did not show any problems with my lungs) i can not remember what the test was called but they put a tube down my throat into my lungs and thats when they diagnosed Bronchiectasis, they said i may have been born with the condition,apart from having sun ray treatment that was it, of course antibiotics came on the scene then and that kept me well most of the time. its only the past ten years that i have to see my consultant now twice a year after a bad spell of pneumonia.

  • My Bronchiectasis was never apparent until middle age and by then it was diagnosed by CT scan. There are a number of people here who have had Bronchiectasis since very early age/birth.

    I hope that you keep reasonably well.

    Rib

  • i think i was very lucky that they found out what it was in those days especially as it was at the near end of the war, i only had it in the one lung and was offered surgery but they would not commit if that would be a cure, so i turned it down, now i have it in both lungs after having a ct scan a approx ten years ago, i am just recovering now from bad infection just can not wait for some sunshine as i love being outdoors. And thanks for your interest, hope you are keeping well also.

  • I have an exaserbation at the present. Eating Doxycycline and Steroids and using nebulisers daily.

    I hope that you take vitamin D to replace that which you miss my not being outside as much as a fully fit person.

    Rib

  • I know nothing about copd other than that I've found out about on this site. I had stopped smoking anyway, was given Spiriva inhaler and that was it, that's 12 months ago, but am doing ok at the moment.

  • My husband was being treated for Asthma and COPD for years. His dentist noticed he had severe club fingers, and sent a letter to his doctor and that's when the journey began of getting a diagnosis. When we sat with his doctor to discuss the results of an X-ray he just said he had some fibrosis on his lungs and referred him to a hospital consultant. We waited over 9 months to see an NHS Consultant... even after diagnosis, his doctor continued to prescribe inhalers. He had what we now know is called an exacerbation, and his doctor prescribed a steroid inhaler. He was very, very poorly. We eventually paid to see a private consultant. We have since changed his Doctor, and changed hospitals. We have now been given lots of information from the new hospitals that we are now dealing with, and we go to an IPF forum. I think the real issue is with GPs... they are incorrectly diagnosing and don't understand IPF. If my husband had been correctly diagnosed all those years ago, there may have been a chance of getting a liver transplant... he's too old now..... and, more importantly, we did not understand the impact that a chest infection has on IPF patients. My husband has lost 10% of his lung function due to one serious chest infection. He was originally given the wrong antibiotics .... after going back to the doctors, 3 weeks in to the infection, they did a sputum test that showed the antibiotic was resistant to the infection he had. Given the serious known impact of a chest infection, why didn't they do the sputum test earlier. As I say, at that time, our knowledge of IPF in the first 12 months from diagnosis was limited... but we are much better supported now and we are lucky that the hospital has a dedicated IPF team.

  • was about three and a half years ago when I was advised/diagnosed that I had COPD

    the information seems vague so I guess it was scant: it was obviously adequate to get me to give up smoking pretty well on the spot but sadly other than that i re-collect little or anything

    it is only now, after a stay in hospital, additional tests, that I am finding out about a few of the aspects and how they impact on me but not nearly as much information as I would like

    much better information now, particularly now I am in the hands of the specialists and hopefully after all the tests I will have a fuller answer next week

    with regards

    Hamish

  • I was given an inhaler told to stop smoking and some information but I found out so much more online which really scared me so I joined here!!

    (I was originally winnietyson but when I moved last year I couldn't remember any of my password to change my email address so I made a new account!!)

  • No information in 1987. Seems the same for people today, This has to change.

  • I researched on my own, visiting the library purchasing books and relating to other people with COPD and I'm still learning more today

  • I also asked re NICE guidelines at a later appointment which they interpret as 'NICE to have but not possible here'

  • Dx over 26 years ago and been on oxygen for 11 years. Not given leaflets but given lots of information and time to ask all the questions in the world by my GP (lungs were his speciality) and my consultant. Also looked around to see what else might help - yoga, diet, exercise - and consulted a complementary doc. Have done PR twice and after the last one, GP referred me to local gym, where for the annual sum of £110 pa I can go as often as I like. For my first 12 weeks I had a delightful young lady looking after me. I am now flying solo but she still keeps an eye for me, as do the rest of the staff. All that has kept me going and my last spirometry showed an improvement. Been to two Breathe Easy groups in that time and, to be honest, would rather spend the time having a coffee with friends. Was on the BLF site in the early days and got the impression that they got all their information from those of us on the site .... unfortunately that impression has never gone away.

    To answer poll, not given lots of info, but given access to it.

  • I was just told, "Nothing we can do" then 3 yrs later told I also have Bronchiectasis (as well as Plural Plaque, Plural thickening, Asbestosis) but still no information given, apart from antibiotics for the Bronchiectasis, 3 times a week. I've since, only recently been told by a friend who has just been diagnosed with Asbestosis, that they will do scans every 3 - 4 months to see how it's going, and if it gets any worse they will take him into hospital and "Zap it" ?? But apparently still no information ( I'm not aware of any treatment for Asbestosis, can anyone enlighten me)

  • The Brompton explained things very well to me and gave me very good books on pah and macidentan. I am sure my consultant in Chichester would answer anything I asked her. It is not always easy to think of the questions, good to take someone with you.

  • Found out everything for myself from the Internet and consequently joined Breathe Easy

  • I had some leaflets, Practice nurse, pulmonary nurse, rehab exercise class then it all went. Now have practice nurse once a year if they remember! At least I get a prescription for steroids and antibiotics but have to decide whether i need them.

    No point in trying to see doctor as appointments are so far in the future.

    This is the first time I have found this site. I was on another but it was very american and I could not take the religious comments all the time!

  • I have bronchiectasis, resulting most probably from my Lupus an GORD. The consultant was excellent. Talked me through the CT scan as he showed e on screen. Explained all very clearly gave me information and arranged an appointment with Physio. Glangwilli hospital in Carmarthen.

  • I was given very little information and support when diagnosed with c o p d which left me very distressed.

    I contacted BL F where I received more information and support.

  • Good Morning Everyone. I was living in San Francisco when I got [COPD]. None of my doctors were experienced with my illness. They kept telling me to take OTC meds. Finally, I moved to Miami Florida and connected with a Pulmonlogist who took charge, Lots of tests, x-rays, etc. It was CAT Scan that showed the damage to my lungs. The CAT scan provided the base line - then I was put on a steroid schedule - slowing tapering off. Six months later - another CAT showed progress. In the meantime, I googled Mayo Clinic and Cleveland Clinic & any other link to study up on COPD. Then, I discovered HealthUnlocked & the British Lung Foundation - which put me in touch with 'real people'; who were generous in sharing their experiences.

    Summary: Not one doctor, nurse, technician gave me directions or a lead on what I could do on my own. We have to be our own advocate. Its just what it is. Hope this helps. Winterhill1940

  • I have since found out more details via internet.

    Thank you

  • I was told at first I was to young to get COPD at 47,i went back to my GP and asked for an x-ray.

    Now at age 52 ,feeling worse through lack of support from my GP

  • Change your GP you don't have to put up with below standard care

  • Can't tick any of the boxes Carol as I was diagnosed with BE as a baby!

  • I was given plenty of information. And was refered to PR I was about 47 when first dx with COPD but wasn't told I was too young.

  • After X-rays, CT scan and Lung Function tests (3 years after starting treatment for Asthma) I was told I had Bronchiectasis and given a leaflet which I didn't understand. That was about 20 years ago. I now know a little more about it. But they still can't tell me if I have Asthma or not. Only confirmed I don't have C.O.P.D.

  • I had mild bronchiectasis. Was not given any info about self care. I have sorted it out myself.

  • Info for people with lung disorders is severely lacking because Dr.s don't want to tell you copd is fatal eventually. It doesn't get better. But they could help people fight it......those who want to fight it. My biggest complaint is with family doctors who DO NOT send people who smoke to pulmonologists for spirometry and explain the loss of lung volume and why you need to stop smoking now........and then explain the results to their patient.....because lung guys don't. And maybe family docs could get involved in ways to help copd patients fight it. If you cared, you would.

  • I have a brilliant Consultant at my local Hospital in Windsor,and her team are so supportive

  • I have nothing but praise for the team who are always ready to respond

  • I was given helpful information but as there are so many variations of lung conditions under the general copd heading, I have never really understood which applies to me. After more than a couple of years wait, I start my PR course soon. Hopefully I will now receive constructive help and info on my true condition and status. I am almost 78 and it has been a long, difficult wait.

  • No, all I've learnt has been from gboogle and this excellent forum.

  • Sorry... you have emphysema/copd. That was it, nothing else. Dr couldn't even explain my test results.

    I took it really hard. I had never heard of either so I went home and googled it. That's when the extreme stress and anxiety set in. I lost a bunch of weight couldn't sleep. A really dark time for me. But then I found this web site and I felt so much better. I really look forward every day to reading posts and feel comforted to know if I have questions I can come here 😊

  • From America...Love your site!!... Diagnosed COPD, INTERSTITIAL DISEASE, SOME SCARING (PF), RBILD...Sent me to a specialist pulmonoligist was considering biopsy, specialist disagreed. No information given....

  • No thanks to the forum and the Internet I found LAM Action and the lady there was very helpful.

  • I as diagnosed with Broncheichetis about 6 yrs ago was shown scan results but had to find information myself

  • I was given the diagnosis of COPD on a Friday afternoon and handed some papers printed off the computer with the words, 'Don't worry about the last page.' The last page was about 'end of life care'. How can you not worry under such circumstances. I was then left to get on with things on my own for a year! My GP was not helpful. My condition worsened and I was then diagnosed with Bronchiectasis as well. Thankfully, by this time, I had discovered a Breatheasy group and gained much sensible information from attending. I knew what questions to ask my GP and get on much better these days.

  • It was from Asthma UK and UK lung that I received the details I needed.

  • I have IPF and have not been given any information at all. Despite being treated for over 2 years everything I have learned about IPF has been through my own research and from this and the Inspire websites.

    I have a good medical background so it is possible it has not been considered necessary in my case but a previous good friend who died of IPF and my brother in law, who has just been diagnosed with PF, were/have not been given any information and both of them have/had absolutely zero medical knowledge. My brother-in-law even came back after his PF diagnosis and told us he had liver cirhosis and had no idea why this was making him breathless!.

    I have no idea why the NHS cannot produce a series of simple print-outs to give to people to take away once they are suspected of having, or being diagnosed with, a serious disease.

  • The internet is a great source of supply

  • This initial diagnosis was from the local hospital in Glasgow. Wythenshawe hospital was much better and I had lots to read after first visit.

  • I was given nothing and there's not a great deal online about bronchiolitis/small airways disease secondary to my long term lupus. My GP is great but she can't answer a single question about my condition.

  • Pneumonia, DVT, multiple PE's, different answers each doctor I asked, permanent, non permanent, depends ? Now have sleep apnoea & severe deafness.

  • I feel a bit of a fraud being on this site mainly because my condition must be very minor compared to you all. Initially i became very breathless and I put it down to the steriods i had been taking for another condition I have, a while after I stopped them I was still breathless and ended up going to see a specialist, had a lung function check on a computer and it was determined that I have only 84% airway which would get worse if I continued to smoke, this frightened me so I did the best thing and stop smoking. I was referred for the exercise programme which was great. I am now trying to lose the 3 stone I put on from the use of steroids and not smoking, so far I have lost 8.5lbs.

  • Now days and for the past 10 years, no one need be in the dark, the internet is very informative

  • Best information was from ILD nurse and from the support group at Papworth which is still helping suffers and carers with help and support .

  • Hi Carol, Its been 6 1/2 years since I returned home from a 4 month stay in Worcester Royal and I still know very little about what (Anti jo-1 pos) is.

  • I was initially told by a locum at my doctor's surgery that there was nothing wrong with me. Six months later after having x-rays, I was told by telephone that I had emphysema and given an appointment with the asthma nurse at the surgery. She didn't explain anything about my condition or give me any leaflets. I was prescribed 2 types of inhaler and ushered out the door.

    Annual reviews seemed to consist of her frustration at my not being able to produce 3 similar results on spirometry tests and consistently telling me I wasn't using one of the inhalers correctly. The pharmacist helpfully suggested it would make more sense if both inhalers required the technique I had mastered and wrote down the name of an alternative product for me to discuss with the nurse. The nurse seemed to take offence at this and was unwilling to change my prescription. A year later she tells me she thinks I need a change of medication and prescribe exactly the same product the pharmacist had suggested. This was 3 years ago and she has never called me back for a review since.

    5 years after being diagnosed, I asked the doctor about pulmonary rehab classes as I knew of people who'd been on them and highly recommended them. I'm very grateful to have been able to attend the course as this was where I learned about my condition and the importance of regular exercise and good nutrition towards keeping me healthy for as long as possible. I wish that everyone who was diagnosed with COPD had the opportunity to attend these classes as they are invaluable.

    It was the respiratory nurses who steered me towards the BLF and it's great to have a place where we can learn from others and share our experiences. It's a really positive and supportive experience on here and I happily recommend the site when I encounter others with COPD.

  • The consultant told me I had COPD but no real information about it but he did arrange a pulmonary rehab course which was helpful but it was only a year later that I learned that I had emphysema. This was only picked up by me during a conversation, still not a lot of information. I have learnt a lot online and from this site, it is invaluable being in touch with others in the same situation. There have been posts about what Grade they have but I have not been informed by any medical professional what grade of the disease I have.

    My consultant also told me I would be referred to a cardiologist as the left side of my heart is not working properly but he did not elaborate. Needless to say I am quite worried and have not heard anything further. Not sure what to do about that. Like others I have just been given inhalers and an emergency prescription for antibiotics and steroids. I am feeling very depressed about all this.

  • I wasn't even told face to face. The consultant gave me medication to treat copd, my gp rang me to say I needed a copd check up.

    The best information I received was from a nurse on the NHS direct line. She told me to check out the heart and lung foundation page.

  • i did have measles and whooping cough at a very young age under three i think, later on i went in hospital (pendelbury childrens hospital) where they did tests(as xrays did not show any problems with my lungs) i can not remember what the test was called but they put a tube down my throat into my lungs and thats when they diagnosed Bronchiectasis, they said i may have been born with the condition,apart from having sun ray treatment that was it, of course antibiotics came on the scene then and that kept me well most of the time. its only the past ten years that i have to see my consultant now twice a year after a bad spell of pneumonia.

  • I was given some information to read but not enough. See the local nurse once a year to do mediocre tests and that's no where near enough, you are left to get on with it and with all the statistics showing that its third or fourth cause of death in the UK and USA you would think it was about time we were given some serious help to deal with this condition. Its not just living with the condition its also what it does to your state of mind.

  • I was told BLF was a good source of information that was all, I was not given any information.

  • I have had Asthma since the age of five. Apart from a seven year gap at the age of 16. I developed COPD seven years ago after a slight chect infection. The only information I got after diagnosis, was "it will get worse". Initial I was given two drugs, one to dry up the mucus and one to loosen it. It seems as though both prescriptions worked against each other so after a while I stopped taking both. I have now leaned there are two types of COPD and I have the bronchial type which I have learned to live with. It hasn't got worse, I do have days where I am bringing up mucus and days where I am completely dry. I have found that exercise does help and as I still play squash, I dont cough during the game, but find it has loosened afterwards.

  • Further to the info, I have never smoked, but both my parents did in the house and in the car

  • One of the best pieces of information I was given, was by a nurse who advised me to check on blf website.

    Sue

  • 2008 I was diagnosed with emphysema,I was not given information nor was I told what to do or expect,I wasn't even shown how to use my various inhalers.I have learnt more about my condition from the people on healthunlocked which has helped me tremendously,my many thanks to BLF & it's many members for being so helpful

  • I often wonder whether General Practioners simply aren't very clued up on COPD. It seems that like yourself, many people on here have received little to no information or advice from their GP.

  • I think it depends on we're you live. Since being dx with COPD in 2006 I have seen GPs at two different practices. And at both there was a GP who specialised in COPD .

  • Glad you've found some specialist GP's.

    I've been with the same practice since childhood. Maybe it's time for a change? The nurse practitioners seem better informed, so I prefer to see them rather than the GP's where possible.

  • After being diagnosed with COPD with 3 X 5 days in hospital, they said I had Bronchiectasis and not COPD so I got a bit muddled as what I should be doing. After 3 years and being 83 I can't walk to good legs ache or breathless, don't worry anymore.

    Marie22

  • So seems I'm one of the 372 of the "No I wasn't given any information to take home with me"

    A good Poll Carol

    I'm hoping the end stats will help BLF bring pressure to bear, upon which-ever under achieving Minister is in charge of Health this week. to insist that all NHS Lung specialist ensure they hand every newly diagnosed COPD patient an information leaflet about their disease, rather than grunt, tell them it’s COPD etc, then wave them out of the examination room with

    “You’ll get a check-up appointment about 2050. In the meantime see the nurse annually or get yourself down to A&E if you’re not well”

    If nothing else at least ALL the newbie COPD’ers will know where to find their nearest Breath-Easy group...

    Breath On Brothers and Sisters, have a great weekend, me and my Oxygen may go out on Sunday ;-)

    LLP

  • Had COPD for 4 years never seen a consultant told by GP not ill enough. I am severe COPD. GP told me and have never had any information given to read.

  • I was given nothing. if I was I could of nipped it in the bud. I have had it 5 years and can still cycle 30 miles and not get out of breath ime even wondering if I have the decease, I can do 50 press ups like normal yet my xrays show the doctor 2 scars on my lungs and he says copd ,, but I drink 40 cups of Tea a day and was wondering , if it was the tea drinking that made me dehydrated as I don't drink any water, but last week I drank water with a spoon of baking soda followed an hour later by a cup of water, after the baking soda I don't get any thick mucas and I am able to get that deep breath to the bottom of my lungs with no mucus and ive notice my syliva turns to normal in my mouth clear ,even in the morning ime not thursty

  • I hav had copd for about 10 yrs hav very little info from respitary nurse at gps asked how bad she thought I were , she said my lungs were like a 70 yr old

  • Nothing not a thing i did not know anything I felt so alone and scared this website has helped so much I have asthma for 66 years but Bronchietasis since September i seen a lung nurse she has helped but get so tired and out of breath I'm so fed up never smoked hospital doctor just dismissed me

  • I was diagnosed with Bronchiectasis in September 2016, all I was given was the BLF leaflet. I had to do a lot of online research for my condition and what has really helped are all the fellow sufferers on healthunlocked.com. Their advice prompted me to see my GP to get a referral to see a Bronchiectasis specialist, which has now been booked for April at the John Radcliffe Hospital in Oxford.

  • I was diagnosed about approx 12 years ago I'm on a lot of medication for this COPD. Now on a different inhaler Dr. Told me to stop spiriva as this had no effect .

  • Taken so much medication for COPD not sure if any thing works just keeps it at bay . There's no cure the damage has been done

  • Everything I know about COPD has come via the Internet, I listen to my consultants with patience,waiting to hear something new, but all I hear is them confirming what I have already found out. Being discharged from A&E with an inhaler and no info was not helpful at all, but understandable given the pressure they are under in A&E and the doctor's diagnosis at the time was later proved to be correct.

  • I received very little information either verbally or in written form....struggling big time...diagnosed in late Oct wit unknown lung growth, 56 yr old.......after many tests had to have lower right lobe removed on Dec 4th ..It was an Atypical Carcinoid ...early stages , wasn't told exact stage...have major heart issues ie:aneurysm/need valve replaced/aortic core graft and 2 smaller issues...but lung not healing very well....was in local hospital for 8 days about 2 weeks ago with quite a lot of pain&sob, they say I have a moderate effusion and base of lung not filling with air properly. I have done everything by the book...exercising , breathing exercises, eating....SOB is worse than ever but have my grand-sons christening tomorrow & my husband died on June 27th...so one of us needed....someone tell me what to do PLEASE???

  • Admitted to hospital bilateral pneumonia and septicemia, CRP 285, ivabtx and oral antibiotics. Told I had COPD given inhalor told I would be having various tests as out patient and sent home. Still do not know what's the I am at...... Everything I know is from a Facebook support group or as been googled.

  • I have idiopathic pulmonary fibrosis and still don't know much about .what I do know when you tell anyone you have they seem to take no notice it's as if your on your own to deal with it

  • I was originally diagnosed with Alveolitis seven years ago, and in September last year I was diagnosed with nsip fibrosis, I couldn't take it all in that day, however, my consultant had arranged for me to attend pulmonary rehab for ILD sufferers in the new Glasgow hospital, I cannot heap enough praise on the entire team involved with me.

  • I was diagnosed with copd April 2014. Last had a spirometry in 2015. My gp has offered no support or advice whatsoever. Was only given inhalers due to another condition.

  • I was too young to remember

    im an asthmatic diagnosed when i was really young

  • In fact for a very many years was told nothing , i assumed was asthma !

  • Nothing at all I was in dark haven't had a clue what it was and how bad it was till know even up to know I'm gathering info myself and few bits they give me here and there depending who it is

  • I was only told I had an umbrella term. I had COPD. Zero info. This about several drugs, however. Have since fired to Pulmo doctors. Both were females, and both extremely condescending. They won't get my $20 again.

  • After a while I came across blf then telephoned easy if you have internet not so good when you are not aware of how well known your illness is and even family unsure

  • I am an ex smoker I gave up in 2005. I had swine flu January 2010 and was very ill for 4 weeks. At the time could not get anyone to come and see me. During the 4 weeks I had cold sweats for 4 - 5 days and only found later that I should have called an ambulance.

    In June 2010 went to Doctors because I still had a cough and shortness of breath which I had not had before the swine flu. The doctor I saw was helpful and sent me for a chest X-ray. I was called in for the results and saw a different doctor who I had never seen before. I explained I had received a call to come in for the results of the X-ray. He looked at his screen and then without a word printed and handed me a prescription. There were 2 items on it I was flummoxed because he had not said a word. I had a quick read and said out loud I take one capsule per day. He then snapped you inhale it you have COPD, good day.

    I went back to work googled and got to a page with the headline COPD a terminal condition. A colleague came to the rescue and redirected me the BLF site. Eighteen months later I changed pharmacist and was then shown for the first time how to use my inhalers properly.

    Andy

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