Copd stages: Hi everyone need some... - British Lung Foun...

British Lung Foundation
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Copd stages

Hi everyone need some advice if someone is stage 3 severe on inhalers and nebuliser twice a day does this mean end stage is close,got a bit upset today our first visit to chest clinic didn't really tell us anything we didn't already know but it still disheartens you,any advice or support would be really welcome.

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No it dos not meen that as far as i am corndcernd i am on neb 4 times a day but night and morning two liquids then two single .plus pumps so i say no long time yet years and years left as i do not plan to go any were so live life to the full and enjoy it ;) :) :)

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hi Me no it dont no were near end stage ok, they should have really put any fears u have on what stage ur at , an explained fully to u num skulls there are alf time, stage 3 can mean lower end of stage 2 coming to 3, only u no ur spiro results, fev 1 and the other fevs in the results, its not the fev 1 at times, its all added up in the readings of them n callacted as they do, this was told me at rehab my 1st time, its no th just fev1 ok its the lot of it, severe o u have ages n ages yet ok, dont let the stage drag u down ok, we have loads on hear ME wat are well end stage n they well do amazing really from wen i read the posts of them, can i ask wat spray u on, not being nosey ,, hear n dont worry eh end stage watever rubbish , should help not hinder n worry no one of us at clinics,

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No not at all. I was diagnosed very severe COPD and other conditions and my health is the same now as when I was first diagnosed.... Eat a good diet and make sure you get some exercise and stick around on the forum these guys will soon cheer you up x

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Hi

firstly ignore the term end stage. I am stage 4 often stated as end stage.

I still look after my self, go out every day seven days a week still do things a bit slower.

I am on oxgen for exercise and moving around. there is no specific time when you change from one stage to the next.

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Hi sorry you have been upset. I don't really take any notice of the different stages. I am sure you have nothing to worry about. Just live life to the full. Everyone is different but with the right medication exercise and eating heathfully you will have a good life. Take care xx

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Thank you so much for all your good advice I knew I could rely on our hu friends to cheer me up it is not me with copd but my hubby I don't want to talk to him and worry him more,he is on been changed over to relvar and incruse inhalers about,,3 week ago I suppose if they were going to benefit him they would have worked by now.

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hi Me what u wanna do is ring up in the morning to B L F , and on hand have his results to read to the nurse, with the fev,s scorings, then the nurse who is trained well advice u which is the suitable sprays for him, as if relvars not working they might tell u of another one, but sometimes as we no, were all different no one really is exactly the same as the nx one, similiar but not identical with what suits one dont the other, might say keep on the combo for other month , but if they do ok then go back to the dcs and say look there not working after another months supply of the spray combo, hes been on 2 months now an no there not working, so give him some other spray, also the BLF will no what stage hes up to, with his readings u give to them .

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Hi poppy they did not give us his scoring or he may have mentioned some number but not in any detail we probably wouldn't understand them anyway

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hi ME, the doctor or his nurse what does the spiro tests will have them,, ring em up ok and ask for copys as u need them for your records to keep track, if that fails say actually its because i am in touch with the BLF, u might get a pause like eh BLF, whats that,, and i need them to ask there advice ok, the request can not be denied with bla bla gibberish wat have yous ok, the recent one would b best , but they have to give it to u,, then ring BLF up and go throw the LOT of his spiro out, fev 1 and the others on his spiro print out, might seam double dutch to u ME but BLF will no were and wat stage he is at ,,

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The important reading is the lung function. Ring up and ask for the lung function in percentages and what stage this is. This is really easy to understand. Eg I am 74% lung function (FEV1) which puts me right at the top of stage 2 which is moderate. x

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hi coughlot ,well according to BLF the fev 1 is part but its all taking in to account the full spiro readings , at ur stage u wont have any syptoms at all correct . 74 fev 1 is no syptoms like chronic , in other parts of the world the fev 1 is 69 fev 1 , odd weird eh,, then again thers been known people at early stages on oxygen and later stages running round town, so id say its how one feels at watever stage there at,,

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I am well aware of that poppy58 but I was simplifying it for the poster to give them some idea of the stages. I do get symptoms with my lung function ie breathlessness especially when going up hills or steps. I also feel tired quite a lot of the time and have a bad cough. x

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hi y e the breathlessness part of it can be the mean old age is also, as we age we loose some of our lung function with our age not the copd, all that is taken into account on the spiro results, breathlesness is different from the chronic symtoms suffered on a day to day basic, healthy people get out of breath but u ask have u any chronic symtoms no they havnt, overweight causes out of breath as well with any one of us, so the breathlessness but not the chronic symtoms, as your fev is 74 i doubt you have chronic symtoms , i no people with the same fev1 an lower who have no chronic symtoms or take any sprays at all, the only way to see if any one as copd , emp , is via a scan which you havnt had as your dc wont send you, me id ask why not eh, and i would have gone over his head and got one time ago, as asthma can cross over in time but no scan no thats odd, did you say you had completed course at rehab coughlot, if the blf run it would have been on your behalf in touch with your gp and requested as you asked for a scan an was refused one, as they write to the dcs on medications needed or to change any sprays or take u of sprays after reading the spiro results, in full not just the fev1 its all tolled together, we all have the coughing fits time to time it helps clear lungs out, thats good that really, shows were all different,

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Ok if you like I don't have symptoms...it must be all in my head :O I know what's what and how I feel thank you.

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It sounds like you are at a better stage than alot of people. But, it's understandable, that you have symptoms of this illness that really disturb you and upset the way you used to live. Continue pressing on; doing what you can do to make each of your days enjoyable.

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Thank you Mrs GLBJ. Yes I know I am one of the lucky ones who aren't really ill with it. I hope it continues but you never know. Bev x

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my question to u had no flippancy in it watsoever right we clear there coughlot, the poster had asked on stages at 3rd stage, and i replied in honesty as to what ive learnt, and seen regards lung problems, ask an ask away till u get a decent answer from who your asking, and i still stand by what i asked you, only way is a scan to determine if we have r not have it, thats your choice end day, your gp wunt send u, you need to ask why no eh, as its our rights under medical care to have r at least be told as the why no eh, o well if your down pub after playing darts have a good win and hope theres no hazzle from the other side as once was before, stress is the number 1 killer so were told to avoid it at all costs as the breathing goes haywire , and as a newbi think the termonolgy is there its fine, the end of the day no one gets out alive in life. any stage of any disese we can go like that .

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I never said I have chronic symptoms Poppy58. I don't but still suffer some milder ones which are due to my copd - not age as I know the difference between the 2.

Don't forget the 74% figure is not 74% of 100 but of the average for my age, height, weight etc.

I must disagree with you on diagnosis though. The main way copd is diagnosed is through a spiromtetry test. A scan only needs to be done if there is doubt about the results and other problems could be present.

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i disagree there coughlot, also im aware how it works as i said, age, plays part in it, as for the scan ur on a bout its u what says u have been denied one, after repeated requests for one, the main way its dx no disagree again there, as ive have known many what have been missed dx as having asthma after years of miss treatments as dx as asthmatics was later after a scan dx with copd, so we will agree to disagree right,

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Sorry Poppy, but you are mistaken to say that breathlessness is not a chronic symptom. Breathlessness may vary from day to day but is certainly one of the most frequent chronic symptoms. (We all know it can be a symptom of other things as well but we're talking about copd here and the poster is talking about stage 3 copd.)

Spirometry measures, through the fev1, the amount of obstruction present and this is the main initial test used to diagnose copd and its stages. A scan on the other hand will not diagnose obstruction but will show accurately the exact damage to the lungs, i.e. how much of either emphysema or chronic bronchitis is present and their location in the lungs. Spirometry cannot do this.

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sorry there 02 but coughlot as previous said she as asked and been denied a scan.

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Hi O2tees as poppy say's that FEV is near normal and given age would be normal.

If I went to my lung doctor with them numbers I would be discharged as being fine and sent on my way with clip to my ear

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My father had COPD, Angina, Prostrate Cancer and led a full life despite everything and lived til he was 88. I hope im as lucky

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Hi Me sorry you are feeling so anxious, I am on oxygen 24/7 and all the other paraphernalia that goe with copd but I live a fairly active life I go out most days, excersise is good for you have you tried the rehab courses they are very helpful you not only get the excersise but a lot of useful information. By the way I have had treatment for lung cancer and I am doing fine hoping to go on holiday to Spain soon so don't be worrying to much as this can cause you to feel more breathless. Hope this has helped if you need any more advise this forum is the right place

Good luck

Love Sue

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Oh Me please stop worrying, and completely ignore that end stage - whoever said that first wants re-educating. Take notice of all your lovely friends on here, get your Husbands results from the surgery and then ring BLF for sensible advice.

xx

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Been reading these comments on here and I see I am fortunate to be diagnosed as only stage 2 moderate. The spiro numbers confused me but I followed the advice given by COOD nurse & took meds. As a life long Asthma sufferer I just thought symptoms were worsening & a new coloured inhaler would sort it out. Deeply shocked at diagnosis at first am moving forward been reading about condition & start Pul Rehab in Nov where I hope to understand a bit more. Still hoping someone will say its all been a mistake. Feeling better than a few months ago so meds must be working. I am lucky to have a supportive partner, must be tough for you people facing it alone.

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hi sorry to hear on your dx but at stage 2 you can go years and years be fore u reach stage down low but stage 2 still the same ok, did you have a scan at all , as at rehab ok u can ask the team anything at all and get help to understand it more so ask away ok, plus after its finished any thing u asked or queried meds not working well is wrote down and after the course is sent to your gp , so ask at rehab ok, also will have copy of spiro read outs latest one and will go through it with u so ask ok , if you have one take it with u at the 1st session ok.

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Good morning Samwing,

PR will be one of the best things you have ever done in relation to copd, exercise and your diet.. It is wonderful, it is good to be amongst others who are in the same boat as yourself, and you will learn and gain a lot. I truly hope whatever medication you are on will continue to help you. I have moderate copd and use Fostair twice daily, with a back up of Salamol for if I am going to do any physical work outside. I don't honestly feel any different from how I used to be, apart from having a few boxes of single use tissues knocking about the house. You aren't alone on here even if you live on your own like me. Best thing since the invention of the wheel.

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Thanks Jennifer. How quickly time passes, I am off to my last Pul Rehab this afternoon. I have learned a lot but now have to build on it. Keep as active as I can & aware of my usual condition so that I can respond appropriately to any flare up. I am on Seritide x 2 daily & Spiriva x 1 daily also Salamol as required. Carbocisteine tablets 4 x daily & Montelukast x 1 daily plus a Steroid nasal spray. It seems an awful lot of medication, had to get a sewing box to keep it all in! You made me laugh about the tissues, I keep copious supplies of them! Looking forward to some Spring-like weather in a month or so fingers crossed!

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Good morning Samwing,

It's lovely to hear from you. I knew you would do well at PR and gain lots from it. Much has to do with a positive attitude and you certain ly have that. I wish you well, and yes, Spring will come, and that's a promise:-)

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I am not certain what you're dealing with, but here's my example.

After a pneumococcal pneumonia event, I was diagnosed with 3rd stage bronchitis bordering 4. FEV1 was 31%. I am 58 and I have "moderate" emphysema with a few 130mm voids in the lower areas of my lungs. That was in May of 2013. The statement from my pulmonary doctor was that people in my condition show up here and leave on stretchers. My wife broke into tears with that news. Disheartening...yes, when you hear something like this. I was told I would be on inhalers the rest of my life. I used both Spiriva and Symbicort one time, one day and never again, after I quit the initial 3 weeks using Prednisone to force my body to accept the inhalers by further beating up my immune system. Call me a slow learner, but messing with my immune system (as I found out how Prednisone works) seemed very contradictory to my health. Three months ago a sleep study found my SpO2% averaging 83%, with lows of 63% during my REM sleep periods, usually 4 to 5 of them overnight. I purchased a couple of O2 concentrators (one as a back-up) and now have an avg. 93%, with lows of 89, at two liter/minute when I sleep. I use no added O2 during waking hours and by the end of my 9-10 hour work day (welder/machinest), I have an 89-91 O2 level. That is up about 5 points from before using O2 at night. I refused the O2 for over two years on the ideals that I did not want my body to get lazy bout working for oxygen. Trying to raise efficiency demands first. I still feel delaying O2 was the right thing to do, but now helping my guts recharge overnight with O2 is needed. My FEV1 is now 62% (reached before O2 use), my bronchitis is "2 bordering 3". My recent CT/iodine scan was not bad! There has been no advancement of the emphysema. There are no cancers. The only answer I can firmly state is that if one exercises/works with passion, eats clean food (stop all processed/fast foods) and never become complacent about fighting "it", you have a much better chance of keeping the crud at bay, and beating it back. It works for me.

The mental repair side went like this...

During the first few months it was hard to work and it was frightening how weak I had become. Walking 100 meters on flat ground was very tiring. 3 Years ago I could lift and carry 200 pounds around my shop. I could no longer carry more than a couple of pieces of firewood (10 kilos) 20 meters without exhaustion. Hardly what I was before. But, I did not stop pushing the limits and I think it has paid off. Now I can walk a kilometer non-stop if I pace myself, and then carry 4 or 5 pieces of firewood into the hose...feeling a little exhausted. I've been recently carrying a 119 pound product I build in my shop for a few feet, instead of using a cart. I think feeling a little exhausted, or even a lot, is good when you're exercising. It means you're pushing the envelope. Although these don't seem like mental issues, I am always hitting that "I'm weak" thought. Don't give in, carry through and rest later. There's nothing comfortable about it and mentally it can be very taxing...be tough. Better yet, you start to get a little angry at yourself for even thinking "you could use a rest", and this, I feel, is where the big changes begin. I just pushed harder and harder.

Finally, my wife had further stepped up the nutrition support over the years. She spot checks my O2 when I'm sleeping...just to keep track of how I'm doing. I loved being her hero, and now I'm working my way back to that. I think she rather enjoys seeing her support help bring me back up and takes pride in helping improve what some consider impossible to overcome. And, there are many stories on this sight about improving significantly. Check them out.

My support for you isn't a comfortable and easy path. It is hard work, it is uncomfortable and it will be exhausting...but it gets easier after awhile. Even the food is a lot of work. There's a lot to learn, and if you're serious about fighting back you'll jump in both feet first!

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Hi Me - as many have said above, test results and staging can just be numbers and it is how you feel that is important. Personally I believe the fev1 is useful for giving a rough idea of your level of obstruction but people with the same fev1 definitely can show very different symptoms.

To give personal e.g. I am stage 3 severe, with 36% fev1 and have increased this from 32% through doing a large amount of exercise. I have used inhalers for many years (diagnosed with copd in 2000 but with asthma in mid 20s). I use nebulisers when Im ill but not the rest of the time.

Everyone is very different and to discuss your own situation I would advise calling up the BLF helpline on 03000 030 555 - their nurses are friendly and happy to talk through any aspect of lung conditions. They will help you work out what questions to ask your GP or consultant, and help clarify your situation.

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Is done by all methods to rule out other stuff or infections

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