who has recovered from emphysema or lived over 10 years since diagnosis and still maintains an active life?

I want to learn and collaborate data from people who are going strong from their initial diagnosis.

Exercise, diet and anything else that has proven to keep you good!

I am the primary caregiver of my 1 year old son and I was recently diagnosed with early stage emphysema. My lungs are running at 80% of expected capacity and I have some ongoing difficulty in breathing.

I want to live long enough for my son to know his dad, as I never knew mine.

I am scared history will repeat and my wife will struggle without me.

All your input would be greatly appreciated on this.

Maybe we can find some common threads to help us all the more in getting the most out of life.

54 Replies

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  • hi jeremy76 if you look at my posts last week you will see that i was diagnosed on 15-1-13 with stage 2 moderate copd 62% lung fungtion and had my second spirometry lung test on 1-4-14 with 84% lung fungtion and was told this was normal and very rare

    and that it must be the exercise i had done and not smoking.

    i feel ok but just cant believe it and my gp wont send me for another test has said no need, so maybe it can happen if you really look after yourself..all the best

  • Well done music :) :)

  • Exercise seems to play a crucial role, that is the recurring message I hear. But diet must also play a part or is it just luck? I don't really believe in luck.

  • I have lived with this condition for a long time but am no longer active. Unfortunately, I was already at the very severe stage when told the diagnosis. However, you have an 80% lung function so are in a completely different situation. If you live cleanly you can have the same lifespan as someone without the disease. My advice based on experience?

    1. DO NOT SMOKE and do not go anywhere near anyone that does. If your partner smokes it needs to be outside, with the door closed and, ideally, 6 metres from any door or window. Do not stand close to a smoker soon after they have had a cigarette as you are still breathing poisons from what is clinging to their clothing.

    2. Do as much exercise as you can, mainly cardiovascular, and ensure this is daily. Keep it up and you will see benefits and stay healthy much longer.

    3. Eat healthily and try to maintain your ideal weight. Get your 5 a day and eat nourishing food, as many people who have COPD lose a lot of weight or, in the later stages, can gain a lot through inactivity and steroid use.

    4. Build a good relationship with your doctors and work in partnership to maximise your health. Find a GP you can talk to and who is empathetic. Learn as much as you can and stay abreast of the latest research and developments, as many GPs do not do so.

    5. Look forward to spending quality time with your son. xx

  • Good advice, thank you.

  • Toci has given a good summary of what you can do.

    Perhaps, you could ask to be referred to a pulmonary nurse team who in turn would refer you to Pulmonary Rehabilitation. they show you lots of exercises in a circuit and give you loads of advice on coping with shortness of breath and all problems that occur with our breathing. Don't dismiss them, they are very knowledgeable.

  • where do you find cardio v exercise Toci ? we sound to be in a similar place,my mobilty greatly reduced now

  • Toci,i am in a very similar place to you,but am very interested in your cardio vasc exercise.where can i find out about this ,please

  • These are the ones I use.

    The cardio stuff (endurance) is:-

    Walking

    Try to do this every day.

    Marching on the spot

    If walking is difficult (e.g. if the weather is bad) or there is not enough space to do comfortably indoors. Stand tall with feet hip width apart. March on the spot, lifting your knees up as you march. You can take a rest and start again if you get too breathless

    Stairs/steps

    If you have stairs at home, try to climb them as an exercise. Pace yourself, breathing in and out slowly as you step. Change the breathing/step rhythm to suit you, and don’t rush! Alternatively, step on and off the bottom step, changing legs each time. Again, do this slowly and breathe as for the stairs (breathe out as you step up

    Static bike/treadmill

    If you have access to exercise equipment that can be used under supervision, then add these to your programme in place of, or as well as, other endurance exercises.

    Then you need the strengthening exercises:-

    Sit to stand

    Sit towards the front of an upright chair. Keep your feet hip width apart. Have your arms loosely by your side. Stand up slowly, lean well forward at the hips. Sit down again slowly. The slower you do this, the better. You can make it harder by doing it more slowly, or from a lower seat, or holding a heavy book

    Biceps curl

    Sit or stand with arms by side. Hold arm weights in your hands with your palms facing forward. Slowly bend your elbows to bring the weights up to your shoulders then straighten your arms again. If this exercise is difficult, do one arm at a time

    Squats

    Stand with feet hip width apart. Lightly hold a sturdy surface for balance. Bend your knees slowly, keep your body upright. Keep your heels flat and go down as far as is comfortable

    Wall push offs

    Make sure you keep your body in a straight line at all times. Stand facing a wall with your feet hip width apart and up to 3 feet from a wall. Rest your palms on the wall at shoulder height. Lean forward slightly, bend your elbows to bring your forehead to the wall. Straighten your elbows again to push you away so that you are doing 'press ups' against the wall

    Heel raises

    Stand with feet hip width apart. Gently rest your hands on a sturdy surface for balance only; you should not lean on it. Keeping your weight over the centre of your feet, lift up onto the balls of your feet. Slowly lower down again. As you progress with this exercise, you can build up to holding yourself on the balls of your feet up to the count of 4

    Arm raises

    Stand with feet hip width apart. Hold arm weights or bands in your hands by the side of your body with palms facing inwards. Keeping your arms straight, lift to the side to shoulder height, keeping in line with your body. Slowly lower your arms back to the side of your body

  • Thanks for this.

    Much appreciated!

  • You're welcome. :)

  • thank you, Toci,greatly appreciated,will do what i can,

  • Toci, you're great to put all this up. So helpful and I'm sure it's appreciated by many more people who read the site daily.

    You're a gem you are :) xxx

    PS do you know about the usefulness of using a small trampoline? There was one at my PR and I'm thinking of getting one to help with the cardiovascular aspect though not sure if it will be of any benefit to the osteopenia. Thanks again, I hope you're keeping as well as possible xxx

  • Never tried a trampoline peeg so can't comment - sorry.

  • what a lovely honest post from you. well done. I wish you well

  • I done all these in the hospital gym with thread nurses..These are the best exercises for lung function....x

  • Yes, they are the best and the beauty of it is that you can do as much or as little as you can manage and no time limits. I am down to FEV1 19% and am on 24/7 oxygen and I still do them almost every day. But you would be surprised how many people say it is too much for them and just give up. I have heard that called committing "suicide by chair". x

  • Brilliant text. well done I agree with it all

  • It's the fine details I'm looking for.

    Could you share the rundown of your exercise regime?

    Could be something there that helped you to your recovery?

    It's great news and very encouraging to read your story btw. Thanks music :)

  • There are numerous videos for COPD pulmonary exercises on YouTube but you are probably fitter than most of us at your starting point. Aerobic exercises such as swimming, steps, walking, cycling, weight training are all good. Do what you can, working to the point of some breathlessness, and try to do the same or a little more each day.

  • Hi jeremy 76 when i was first diagnosed last year age 55 i was scared i had never heard of copd but knew empysemea and thought you just live for a few years untill i joined this blf site and started getting information from the nice helpull people on this site.

    Anyway i joined a gym has was so unfit and stopped smoking.so i go 2 or 3 times a week and swim has they have a pool there and now after a year i can now do 10 to 15 mins on the rowing machine and on the treadmill i can now walk on incline of 6% for half hour and sometimes trot for 10 mins and will do that for about 2 sometimes 3 miles but could do more and also lift some weights cycle and on top of that i still work part time walking a lot and i do eat friut and honey but my downfull is i do still like a few beers a couple of days a week so i never seem to lose wieght but never put it on..13stone 7pounds with a bit of a belly i cant seem to get rid off so must be the beer.. anyway i must admit even that i feel ok i am not convinced that my lungs are normal only because i have read that you cant go from moderate back to normal or can you? good luck and try not to worry

  • Jeremy, I recall seeing a YouTube post explaining the function of the diaphragm, exercising it and keeping it fit and strong for lung support.

    In fact I must find it again to remind myself.

    Just look it up, sorry I don't have time at the moment to search out a link for you but you'll also come across lots of other useful YouTube clips on breathing exercises. I've found breathing exercises very beneficial to improve my lot. The past winter has been my best for a while. Only 2 infections (caught from little ones) and leading a more normal life. I live in London and I'm convinced I wouldn't have had my probs so early if I lived in a cleaner environment.

    Good luck, P

  • Try looking at Dr Noah Greenspan on youtube, excellent advice,the guys a joy to listen to.

  • Thanks, I'll have a look :)

  • Hi Jeremy,

    We don't recover from emphysema but it can be managed and its progression slowed down hugely.

    I was diagnosed in 2000 with moderate copd - I keep well and active with a good diet, and i walk, bike, do pulmonary rehab exercises 2-3 times a week, and some weightlifting. I was told by my gp when diagnosed at 55 that i would probably live to 75, presumably based on average survival rates for ppl with moderate copd. Currently I'm 68 so that's 14 years so far and still going strong with an FEV1 of 37% last time it was checked.

    Ive recently been assessed as needing ambulatory oxygen as i desaturate when walking outside, especially up hill or carrying heavy shopping etc. Strangely this doesn't happen when I lift weights, probably as Im not walking at the same time. But i was dancing at an event on the beach last weekend with my O2 cylinder on my back. Not everyone gets to need O2 though, many don't and we are all different. I still live a happy, enjoyable and active life.

    Having been diagnosed at the mild stage you have a good chance of leading a pretty normal life if you look after yourself. Toci's advice is excellent. Only thing I'd add is to try to keep away from infection so you don't get flare-ups of the condition - these can further weaken your lungs. Educate your family and friends about this, though realistically that's hard since you are caring for a one year old who will be building up his immune system through catching everything that's going.

    Please ignore if this is not relevant, but STOP SMOKING if you do so currently. What better motivation than staying alive and well for your son.

    All the best to you :)

  • Good post Jeremy, let's hope enough posters answer to get a good idea of what's in store. You are very mild and from what I've read on hear, that is a very good position to be in.

    I have only been diagnosed a couple of years although I was showing signs 8 years ago. I was given a spiro test and the docter told me to stop smoking. I think they knew then but didn't say outright.

    A lot of good people, who have lived with this disease for many years, seem to have dissappeared from this site that would have been a great help to your quest. A lot, (But not all.) of who are left are relatively newly diagnosed. So I don't know how well you'll do but I'll be watching the responses with great interest.

  • Good reply O2. I was just thinking the same. Emphysema is a progressive disease so you can't 'recover' from it. But with proper maintenance you can live a long and relatively healthy life.

  • Thank you for your responses. My numbers are pretty good but I have had times where I feel I just can't get enough air inside, at worst this can go for 2-3 days.

    I guess it's time to get physical!

  • Hi Jeremy, My husband was diagnosed about ten years ago but he had been suffering for at least five before that. My key advise would be Exercise - I am convinced that exercise is the key! Keep yourself fit and as healthy as possible which might be hard sometimes with a one year old. I would suggest that you make sure you get a flu jab and pneumonia jab and maybe take extra vitamin C if your son is at nursery and picking up lots of bugs! The final advise would be to go to the Doctor at the first sign of a chest infection - don't wait, My husband was always convinced he could heal himself but I feel that some damage was due to the fact he didn't go and get antibiotics. Good Luck! TAD xx

    PS MY husband is now classed as very severe but still works full time, we have a 12 yr old daughter and he seems to keep up with her! Enjoy your life xxx

  • My boy is extremely active.

    He's keeping me fit and having a good ol laugh at his dad's attempts on home aerobics.

  • I am perplexed as to why you are experiencing any symptoms whatsoever if you are at '80% lung capacity'. Such symptoms would normally not occur until around 50% -60% o even less - and then only on exertion. Many people without COPD have around 80% of 'expected capacity' - eg. the obese, 'couch potatoes' and someone less than fit while recovering from an illness. A response to allergens or an asthmatic factor could also cause a low reading - so my first advice would be to mention your breathing problems to your GP and ask for repeat testing/ second opinion to discount mild asthma / allergens - particularly if your last test took place around the time of the recent 'Saharan dust pollution' episode - half of Britain would have had poor readings then. Heart disease and other conditions can also cause symtoms of breathlessness.

    If a second opinion reveals that indeed you do have the beginnings of COPD, then removing the cause - ie.smoking - may well be enough to stop any further deterioration at this stage - many 'mild' COPD'ers do not progress further and live totally normal lives. Many mild and moderate COPD'ers have more or less normal lifespan - as do some severe/ v.severe COPD'ers. I have attended two COPD funerals so far this year - both were diagnosed severe in mid life and were v.severe in old age - one was 82 years old, the other 85. The 85 year old only decided to get a mobility scooter two years ago! Their 'secret' - each of these gents - and they were truly gentlemen - each gent had continued to live as if they had not got COPD - ie. they still went for walks, still shopped, still pottered in the garden etc. So if you do have COPD, then stop smoking and stay physically active.

  • Smoking was kicked 2 months ago. I'm also based in Hong Kong-but in the mountains not the smog laden cities.

    It is a mystery with the numbers.

    I had been a pack a day smoker since 16 and I'm underweight and not so fit.

    (Getting better on this now)

    CT scans and blood tests say no cancer or anaemia as well.

  • Fev1/FVC is

    Pre 66%

    Post 67%

    FEV is 4.86/5.11

    FVC is 7.33/7.68

    Pre/post respectively.

  • Parvati siad: "I am perplexed as to why you are experiencing any symptoms whatsoever if you are at '80% lung capacity'."

    Actually you are relying on incorrect information, most likely from a dated and modified version of the Fletcher-Peto curve (which BTW has since been proven to be an inaccurate model of COPD progression). Some people may not experience "symptoms" until their lung function is significantly reduced however if you review the medical journals you would find that even in young people in their teens and twenties there is a statistically significant and demonstrable decline in aerobic performance amongst smokers versus never smokers of a given cohort. Now if however you are under the assumptions that "symptoms" do not not include decreased aerobic function or VO2max, and believe that in order to qualify as "having symptoms" one has to have trouble comparable to walking up a single flight of stairs, than I would say you as well as the reference materials you refer to have set your expectations inappropriately low. Ask anyone with mild COPD how easily they can run a mile compared to before the onset of their COPD and likely all of them will tell you it is markedly more difficult if they can even manage at all.

    Even individuals with mild of "pre-clinical" COPD have significant impairments in physiological function. Whether they are astute enough to notice their deficits is dependent upon the patient. Most patients (>70%) with GOLD stage 1 COPD do have noticeable symptoms.

    If interested, please review the attached expert presentation for an accurate explanation of the physiological impairments in mild COPD.

  • that's great advice- i was just recently diagnosed - have two young children and was so scared- am probobly still slightly in denial if I'm honest with myself. anyway good advice thank you

  • Hi Jeremy

    Agree with all of the above. I am 63 and have 55% lung capacity .....diagnosed in October . Proir to that had frequent chest infections and a persistent cough. Since quitting smoking I am symptoms free ( am at least as fit and active as others my age )

    . As Parvati says most people do not show symptoms at 80%., and go through life without being diagnosed until a much later stage . This may explain why there don't seem to be many people

    who fit your criteria ie 80% and leading a normal life 10 years later. They either don't know they have the disease . Or , if they've been diagnosed at the mild stage (sometimes by chance during eg

    scan/xray for something else ) .....so long as they have heeded doctors lifestyle advice ,. they are probably leading a life as if they didn't have copd .

    Have only been a member here for 6 months . However have read older posts where young people have been diagnosed similar to you .They are given advice by doctors and members here but then seem to leave ....Good in some ways as they have likely gained some benefit and probably living healthy active lives. Shame in other ways that they leave as it would be lovely to hear some more happy endings.

    Hope you don't mind me asking but were you showing symptoms of copd which led the doctor to do xray and c t scan.(seem to remember you mentioned these in an earlier post .)

    Cheers Coastal

  • Before the diagnosis, I was shorter in breath and lower in energy, but I put that down to raising my son and living in Hong Kong. My wife, who has lived here all her life frequently complains of the bad air here. I recall using nasal sprays to help clear my airways too.

    Being 38 I probably had some degree of denial to the symptoms.

    Last year I went for a chest X-ray due to what was inflammation of my lower left rib.

    That came back this year, in addition to really feeling short of breath, light headed which ended up with my diagnosis of early stage emphysema.

  • When you say you have 80% of lung function, do you mean your fev1 is 80%?

  • Yes, I had a lower rib inflammation which led me to get checked. SOB came on soon after and onset was rather sudden. I had times in the past 2 years where I felt SOB but that was only temporary and I put it down to new family duties. Now it seems to have set in permanently.

  • Just seen apost by battibio and a reply to him by egomat...........post section 10 hours ago ......seem similar age and symptoms to yourself .

  • Yes, I'm keeping in touch with egomatt.

  • We smokers are good at denial .I had an awful cough and frequent chest infections for 2years , but avoided going to the doctors as I didn't want the smoking lectures ! Clever or what ! However I feel that at my age I am really lucky to be fairly symptom free after 48 years of smoking .( I keep touching wood ). Continuing to smoke can result in a fairly rapid decline .

    As mentioned in other posts exercise is also important. My doctor thinks that my absence of symptoms such as sob is down to a good fitness level which is compensating for lack of lung function.

    As your little boy grows you could perhaps do fitness activities with him eg swimming , football etc I'm sure you will think of more and have lots of fun. Just seen your post about home aerobics ...sounds good.

    Cheers Coastal

  • diagnosed 25 years ago with emphysema

    regeneratinglungs.com

  • I got a headache trying to read your link!

  • Hi all hope your keeping well I've just sent Jeremy a dm I'm also asmatic as well as emph in top lobes mild, I've had lots of good advice here and it's working for me so far I've stayed relatively well it's mainly my asthma and alergies that cause most of my problems ie perfumes, polish and fumes also smoke from fires etc I've seen a few consultants and asthma nurses that assure me that my emph will not kill me if I continue with not smoking. now days I try to look after myself and go to the gym every other day and I'm feeling good thanks to all the advice on here and blf nurses

    Have a good weekend all xx Jeremy get checked for asthma on lung function post ventolin, that's what my main problem is mine didn't play me up until six months of quitting due to airway constriction after quitting the evil cigs good luck and check your in box mate. night all x keep well

  • Yes I did do the ventolin spirit check, no difference in breathing ability was shown.

  • Hi, I see no reason why you shouldn't last until well beyond pension age. I was diagnosed in 1989. 0ne year after giving up smoking.(Obviously Sod's Law was playing it's part).

    My lung capacity is only 42%. However I am fairly mobile and begin pulmonary Rehab in two weeks time.

    I'm now 78 and see no reason why I shouldn't see another ten Christmases.

    You have much to live for. Don't despair and give life everything you can. Your body will thank you and you'll benefit will a longer life. Cheers.

  • I was diagnosed 10 years ago (I am now 76) but I used to suffer from bronchitis a lot, and I am sure I had emphysema for a long time..I smoked for 51 years - ooops. Going to the rehab clinic has helped me cope with it much better and undeerstand it better. Your positive attitude will keep you going for many many many years.....just think, it isn't that long ago (sixties) when people with emphysema just took it for granted they would die quite quickly after diagnosis, and now look at the improvements......so, lots of medical changes will happen in your lifetime to keep you living a very full life.

    all good wishes.

  • Thanks Louisiana x

  • I'm in my 70s and have had respiratory problems for many years. Toci has given you some very useful advice. I have actually improved my lung function to the dis belief of my doc. I have tackled from all the points I could think of. I have never smoked but was a farmer & originally diagnosed with farmer's lung. I have removed from my life all the allergens that were affecting me. I exercise every day, cycling, walking & a mini trampoline and yoga breathing exercises. I never eat any processed food or dairy products and eat a humungous amount of veg & fruit (I don't think 5 a day is any thing like enough),some in the form of juices or smoothies. I too am underweight and was losing more. Now my weight has stabilised, I have loads more energy. I have started to do daily meditation. I think it is the combination of approaches that is making a difference.

    I have often been told that emphysema/copd is not curable & one can only manage it. But that is not my experience. I am still taking steroids but only the minimum dose and am aiming to reduce it further and ultimately stop taking them.

    It does take a good deal of research and determination (and some pig-headedness) to improve. The medical system is totally focussed on drugs but they are not the only tool in the box and very often cause more problems. Best wishes!

  • Cheers mate. Defy the odds, make the pros eat their words. It's my aim in life!

  • Mine too! The sad thing is that the medical pros don't seem to be interested when you have an "alternative" success. I healed an underactive thyroid by diet (no meds at all) and my doc told me it was now fine but didn't want to know how I'd done it.

    Cheers

  • feel for you;l keep your chin up. Been there believe me. Not nice. All will be well. Be posivive Wish you so well

  • feel for you. Do what your told ! take medication properly and think possitive and be thankful for what you can do; Really don;t mean to sound horrible but been there done that and you know what it is awful so I really feel for you; It is terrible. Keep your chin up and I really feel for you it is just terrible. Keep your chin up please. I know how awful it is. Take care.

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