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British Lung Foundation
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COPD review

Not had a test for two years but today the doctors called and said they want to do a COPD review :( But i don't really want one because if it's got worse that will just make me worry more.

Do you all have tests or do you think im right.

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Tricky one. GPs are under contract to look after patients with these sorts of diseases. Mine insisted on an asthma review, I don’t have significant asthma but very occasionally I use Ventolin for the placebo effect. It does nothing. I had made an appointment for the review but they still cancelled my Warfarin to make sure I turned up. I was hopping mad. I had done the anti-coagulant review already. The asthma nurse was at a loss because she couldn't really deal with me in any helpful way but I jumped through their hoops and ticked their boxes. So got my Warfarin back. Still makes me seethe. So if you are on any repeat prescriptions I suggest you grit your teeth and comply.

Sorry not to give you any encouraging advice.

Kate 🙁

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Not on any meds except acid tablets for my acid reflux.

Mine is also booked in for asthma review although i have emphysema

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Well, you could call their bluff and refuse. I differ from you in that I always want to know how things are. I find it helpful. My symptoms are severe and worsening and it would be bizarre if the results didn’t match what I experience. But a spirometry result on its own from the GP is no use as my problems only show on full lung function tests which I have at the hospital.

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I have told them i don't want one but they keep going on about it. I like to know what's going on but surely i would know when it's changed or need help ?

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I have my annual test but I don't bother with - or about, the numbers. I used to ask for a print out but I don't bother with that now. If I'm a little more breathless than usual but still feeling ok that's fine, if I'm not feeling ok - for whatever reason, I go to the doc's in much the same way that I did before being diagnosed. Interestingly, two respiratory nurses disagree with my diagnosis but being 'only nurses' (their words) they don't feel qualified to question the doc. I might at some point, but while I'm not having any problems I'm not going to go looking for them. I just keep my fingers crossed and count my blessings.

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That's interesting as my doctors won't discuss my asthma or copd with me as 'We are much too busy and the respiratory nurses know more than we do anyway'. x

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Have to say I was surprised, I would have thought their feedback carried some weight otherwise what's the point of them doing the tests. I did ask the doc if my symptoms could be caused by the op' that I'd had in 2012, as my stomach - or the third of it that's left for digestive purposes, is now in the middle of my chest. He assured me that that, and having one lung collapsed for several hours during the op', wasn't relevant. The nurse on the other hand, doesn't know how emphysema was diagnosed without a ct scan. I also have a blocked heart valve and have 'wondered' if being short of breath and having frequent dizzy spells might be down to that, the doc was sympathetic (though he sounded - somewhat patronising) saying no, it's just copd. I'm no wiser.

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Personaly I do not think he is correct as the heart can give the systems you describe but I am not a doctor, insist on a CT scan

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Its on my 'to do' list for the next time I'm not feeling 'right'.

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You could always ask for your notes from the hospital Magpuss. I would ask soon though as out local hospital claims they only have to keep notes up to 8 years if I recall correctly from a discussion I had earlier this year. You just contact your local hospital records deportment they cannot charge a fee now, they will tell you what you need to do to get notes.

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Thanks for your suggestion, the next time I see 'my' doctor I shall be asking him more questions about the heart valve.

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I had heart valve surgery and they told me it causes shortness of breath. Maybe check any of your meds for breathing side affects.

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They don't even do it correct. I was told they do the test then give you an inhaler then do it 20 minutes later but they don't here just give you two tests one after each other.

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if asthma test wait twenty mins take ventolin then retest. copd no need just do the test.

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Oh that's why they don't do it then thanks for letting me know.

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Conflicting views here, as although my CT scan declared "Severe Emphysema", the nurse @ my GP does the full test + 20 min.Ventolin wait to assess 'Reversability'. I'm aware that strictly speaking it's only Asthma that is 'Reversible' with a few puffs, but my test results (twice) AND my experiences over 15 months contradict that, as the improvement are both experienced AND measurable!

Frankly, I'm appalled at the parlous variation across the medical profession regarding our respective conditions, quite scary really, too much 'talking the talk' with very little 'walking' under way!

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Why not go, do the test, but at the onset tell them that you do not want to know the results. The results will of course go on the GPs notes, but normally you don't see those. Everybody is then happy :)

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Yes i see them because i have online access to all my account

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Don't look then. I can view all mine too, but all test results are all individual files that I have to consciously click on to view.

I am like Kate, I want to see/know everything, knowledge is power. The power to change your life to suit your needs.

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Yes true will go get it done and see if it's worse

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I think it's best to go and do test but you can refuse to go they can't make you do something you dont wont. In end if you don't won't to hear the results you dont have to. Me for example when I'm call to do a test I would like to know my results because it could approve or fingers crossed gotten worse.and sometimes it does scares me I worry when it's worse but i know we going talk and figure out the next step

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True will get it done

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My opinion is I agree with Kat 46 and 2greys as knowledge is power and I want to know but that’s just me and everyone is different. Just do what you think is best for you.

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Will get it done and see if there is any change over the last two years

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I must admit I come into the category of wanting to know everything. I think as it's my health then I have got to know as much as possible as knowledge is power. x

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Will get it done and see if there is any change over the last two years

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Fingers crossed it hasn't got any worse. x

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Thank you

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Lucky you, a lot of surgeries and GP's do not bother these days, go for it and if you do have problems, yu are in the 'queue' so to speak to get something done about it

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I would want to know, and go from there, and keep on fighting. Know since worrying when the Lord says it is your time, it is, and what a joy. I pray to make me strong and not fear the moment, Just smile every day you wake and keep on going. sissy2 USA (a note over here I think it is different, I have never seen a lung doctor, just my family dr. , told me I day your airways are not as good, and that was it, no do this or that, so I look up things on my own, I think I am going to try and get the SmartVest looks good helps break up mucus better that my Allertrex, it works pretty good. But the vest looks like it would be better.

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I have a review every 12 months but mine is done over the phone as I cannot do the tests because I have Glucomma and am not allowed to do the blow tests.

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Andy56 - these reviews are certainly nothing to be worried about and it seems odd that you don't want to go. Is the reason that you smoke and are afraid to tell the nurse or maybe it is that your COPD is not causing too many problems and you don't see any reason to go?

The answer to your question is yes, you do have to go if you are receiving medication from the GP. It has a cost implication for the practice and they need to know that their prescribing is cost effective, necessary and useful. Think of it this way - if you were paying someone for a service you would want to know that the job was being done properly and your money wasn't being wasted.

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Have the test it will become worse if your not on the right medication it’s awful when you can’t get enough oxygen into your lungs

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It's best t go then any questions you want to ask can be sorted. My last review was a chat checked my medication was suiting me. And for me that was it. Go back in August.why not take someone with you for a bit of moral support. If your not having any problems you should be fine. God luck.

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I totally agree with Bella395, and cannot believe that you would not want to know what is going on with your body. I believe in being proactive and in control of everything that happens to me. Go along and ask questions and listen to the advice.

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Hi Andy I have very regular checks and I would advise you to have it done . The doctors need to know so tiny can treat you properly. Regards Kevin

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YES ANDY - YOU HAVE HIT THE NAIL ON THE HEAD , OK , DOCTORS MUST OF COURSE MONITOR HOW YOU ARE, BUT THEN THAT RIDICULOUS " STAGE" NONSENSE STARTS REARING ITS UGLY HEAD AGAIN BY SOME DOCTORS - WHICH REALLY DOES WORRY PATIENTS , AND IS JUST ANOTHER FANCY WAY OF SAYING , IN MANY CASES = " YOUR TIME IS RUNNING OUT " - CHARMING !! = WHICH IS IN MANY CASES = UTTER RUBBISH . I HAVE ALREADY GIVEN EXAMPLES , ON THIS SITE, OF " FINAL STAGES " SUPPOSEDLY BEING REACHED BY FRIENDS AND NEIGHBOURS - CANCER PATIENTS, FOR EXAMPLE , - ONLY FOR SOME OF THEM - STILL LIVING VERY ACTIVE LIVES UP TO AND BEYOND ELEVEN YEARS LATER, AFTER THEIR = " FINAL STAGE " " DEATH THREAT " JUDGEMENT HAS BEEN PRONOUNCED BY A DOCTOR ! ... !!!, = ONE OF THEM HAS MORE ENERGY THAN I HAVE !... HE HELPS ME WITH MY SHOPPING WHEN I AM HAVING A BAD " PUFFING " DAY !!!, AND ASKED ME YEARS AGO , WITH A SMILE = ...." SO WHEN AM I SUPPOSED TO DIE THEN ? " !! ... JUST GO BY HOW YOU FEEL ANDY56 , YOUR BODY WILL TELL YOU ALL YOU NEED TO KNOW ... BE POSITIVE . TAKE YOUR MEDICATION AS INSTRUCTED ETC , =, BY THE WAY , .MY DOCTOR'S NAME IS . ===" $%^%$%$ " ! = NOT GOD ALMIGHTY !!! - I TRULY BELIEVE , ONLY HE HAS THE FINAL WORD IN ALL THINGS !! GOOD LUCK ! ...

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Hi Andy, I would go to your check up as there may be things that you could do/use to help your condition, burying your head in the sand wont help you, just ask them to not tell you what stage your at, if that is whats worrying you. At my practice they do an asthma check which for the last couple I have refused as I dont have asthma and when I have spoken with them regarding bronchiectasis they havent got a clue, so for me there is no point. Some of the nurses dont take blood as they are not trained? Most cant do a manual blood pressure check, so Im afraid I dont have much faith in them. When they have done the asthma check they keep insisting I take the brown inhaler to open up my airways, i have explained that my airways are already wide open and this inhaler just makes me cough, so have given up. Even my gp doesnt really understand the disease but does go along with my reasons for not taking certain medication. I do go to see the respiratory consultant at the hospital if things start to go wrong but think I need a specialist in this disease and will ask when the next exacerbation comes along. Keep your chin up, alot of people live a long and happy life with these diseases, we just have to adapt our lives and make most if every day. If your smoking then stop, have a good diet and get plenty of exercise. Its surprising how much this will do for you x

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chartering a progresive terminal disease that thay cant do anything for seems a waste of time. Sure if your breathing gets worse or you have an attack then yes see doc straight away as symptoms can be controled and may need to change inhalor

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Im going now just see what they say but i don't trust any of them loll i also don't use any meds or inhalor just yet

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From what you say your condition is mild and having little impact on your life. There are no cost implications in terms of medication and you are satisfied with your situation. You could therefore contact the surgery, explain your position and tell them that you would prefer not to be invited for COPD review.

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only reason i can see is so thay dont get sued by family for not doing anyhting ehen we die

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Yep because there now much use well not to me there not.

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To be blunt, as you don't trust your medical team there seems little point in attending the appointment because you probably won't take any advice that is offered. It will be a waste of your time and theirs. Believe me, they have enough to do without dealing with patients who don't want to be there. You are at liberty to change your general practitioner.

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In order to keep my oxygen, I have to have pulmonary function tests every year. Personally, I would much rather know how I am doing so that I can explore new ways of staying as healthy as possible.

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I am only recently diagnosed with COPD but I am of the school of thought - that you can only deal with a problem if you know what it is

If it has gone worse at least you can deal with it together - it may only be a change of meds which has recently happened to me

I hope you decide to attend Andy and best of luck

Regards

Annie

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Yes im going now

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That’s good. Hopefully you will be able to trust the staff and their expertise in the management of respiratory illnesses.

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I have 3 tests in the last two years and the readings have stayed the same,I put it down to a little exercise, walking and swimming.

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Hi

Have the test. If they do find that you are suffering from a respiratory condition they will be able to offer help in the way of medications etc. I have COPD and attend the practice nurse every 6 months and it doesn't present any problems for me. They are quite painless and non invasive tests and it was only through these tests, some years back, was it determined that I had COPD. Don't be afraid. Please go. These people are there to help you.

Best of luck

Regards

Kevin

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I know i have emphysema the hostpital told me over 2 years ago

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I was also told many years ago (during a DLA/ now PIPS assessment) that I had Emphysema. The assessment was carried out by a doctor. I, in fact, have COPD which was discovered during a visit to the practice nurse and I was then given the appropriate medication. I'm surprised that you don't have any inhalers. Ask about that because without them I would be in serious trouble, having already had two hospital admissions last year. The important thing is to be properly diagnosed and treated accordingly.

The best of luck to you.

Regards

Kevin

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Hospital told me i had Emphysema asfter a CT SCAN I have never had any meds and to be honest don't think i need them.

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hi I am the same diagnosed by ct scan for emphysema by ct scan no breathing problems as yet hopefully never only had one breathing test nurse said I didn't have copd going by test that was last January no meds don't need them but yes I would do breathing test if got offered just so I knew what progression is.😁

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Yes they told me that they would not know i had Emphysema from the lung function test last two times

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I would definitely have the review because if the condition has worsened your inhalers may need to be changed. Your GP does get paid for doing reviews. 90% must be done for the GP to get full payment. You will be surprised how many patients are taking their inhalers incorrectly when checked at annual review. Just tweaki g things slightly can make a difference!

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I don't have any inhalers or meds

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ah thay do it for the money, makes sense now as there no other real reason to do it. good to do it for astma as things can be done and is not terminal like copd

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Glad to hear

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I would take advantage of any tests and be proactive in accepting advice. A couple of weeks ago I found out about 'Singing for health' , joined Tai Chi and a choir ...all said to help in improving lung function.

I use my daily asthma inhaler ( preventative) and rarely need ventolin. That said I ve decided to walk more each day. The switch to ' I can help manage this condition' is putting fire in my belly. Plus I believe God wants to bless me daily.

Best wishes

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