Rapid loss of lung function,

My name is simon and I gave up smoking in july 2011, 1 month before my 50th birthday because i was having real problems breathing and had a very painful cough. Typical bloke i just thought I will give up smoking and that should do it, just put it down to a smokers cough. I wasnt a heavy smoker anyway. At first it seemed to help but i soon realised it was still a problem but i didnt got to Dr till about April 2012. After doing some tests she told me there and then that i had COPD. and she started me on the standard treatments first , Symbicort and ventolin, that didnt seem to work so then i was put on Spyriva and seretide and ventolin for relief, and have had mucodyne for a while but i dont seem to have a lot of phlegm. I saw a consultant in june 2013 who determined i had a lung function of 67%, and if i kept up with my exercises and medications and off the cigarettes i could expect to see a fairly slow progression of the disease. Well i have done that and it has just been getting worse and harder to get around, went back to drs last week and my lung function is down to 42%. In jan it was 58%, in April it was 49% and last week its now 42%. On Friday I went for my usual walk, which i hadnt done for a few days, i only did one third of my usual walk but on the way back i just lost all ability to function, I got to the road and its 200metres to my house, it took me 20 mins and had to stop about 8 times and just sit on the pavement, i finally just about collap[sed on my doorstep, i had no phone, i had dog on lead, it was frightening, i felt like i was drowning but in air, i did manage to lift my arms and unlock the door, you just want to rip all your clothes off and try and get some ventolin in, my anxiety levels were so high that adrenaline was going and i really thought my time had come, after 10 mins i had relaxed a bit and was manahing to recover. but it was another 40 mins before i could move again. That was Friday and since then i feel completely ewashed out and my lungs actually feel worse than they did last week, it certainly is harder now than then. I also have hyper-inflated lungs which means the air cant escape. Has anyone else had this sort of rapid loss>

37 Replies

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  • Sounds like you are having difficulties with your lung condition, it should be improving with the correct treatment, however sometimes things don't go according to plan so you need to go back to the GP. A chat to the BLF helpline nurses could help too. You may just need an adjustment to your drugs or dosage on the other hand you may have infection that's irritating your condition but what ever you need help quickly.

  • Hello sorry to hear you had such a frightening experience. You need to carry the reliever with you all the time. I would ask the doctor about pulmonary rehab because they teach you how to relax your breathing and clear your lungs.

    It is difficult when you are new to all this to recognize what is going on. If you have had a bad experience like that you will feel washed out. but it is important to keep moving. any way best wishes for now and take care Irene

  • My husband has severe Copd and has had for a number of years (about 12). Firstly I would advise you ring the BLF helpline in the morning and ask their advise before going back to the doctor. But you need to go back and ask to see the consultant again. There are different meds available. Again you may have an infection my husband started with one yesterday but it did not show all the usual symptoms. Have you Been referred it pumlmonary rehab? Please don't just leave it and accept it please get advise good luck TAD xxx

  • thx everyone! its just that im doing all the right things, this is the second time it happened, and I have done pulmonary rehab, i had to stop because of my back, but they held out a really good prognosis, but it just seems to have rapidly declined in last 6 months!

  • I will call BLF, and I have a friend taking me to Drs in the morning, its been suggested that I should have a scan just to see if there is something underlying that they may have missed!

  • You don't say what tests were conducted but COPD should not really be diagnosed without lung function tests and x-rays, as well as spirometry. My consultant also checked my oxygen statistics using a finger pulse/oximeter and then via an arterial blood gas being taken. He then arranged for an electrocardiogram an echocardiogramechocardiogram to make certain what was causing my breathlessness and arranged a blood test for Alpha-1 antitrypsin deficiency. I suggest you need a referral to a respiratory consultant if these have not all been done.

  • I went to a consultant last year in june 2013 and he said i had hyper-inflated lungs, meaning trapped air etc, and i did all the tests , lung function was 67% then, its now 42% as of last monday and it feels worse since my attack, I did spirometry aswell, at the time, like i said, He didnt seem too concerned as i had stopped smoking and he sent me to pulmonary rehab which i did well in, and they would joke that i was fitter than them, i managed 9 on the walking beep test, but my back went and i had to stop, but since jan its just got so much worse. going to drs in morning to discuss!

  • Hi I am sorry to hear of your attack, that must have been very scarey for you. If you are or have been a smoker doctors tend to diagnose you with copd. Under the NICE (National Institute of clinical excellance?) guidelines (google it) a diagnosis of copd shouldn't be made without a chest x-ray and if this is unclear then a CT scan should be

    done. Tell your doctor you want these and insist. It doesn't sound like copd with such a rapid decline so it sounds like there is something more going on.

    By the way my lung function is the same as yours and I have asked several times to be referred to a consultant and just get told no. How did you manage it please? I only see a copd nurse who also diagnosed me. Never seen a doctor unless I get an exaberation! They even refused me an x-ray until I insisted. Good luck with it all and let us know how you get on xx

  • I find your post interesting in the fact that I too have never been to see a consultant. I was diagnosed 3 years ago although I knew something was wrong a couple of years before that ( I just didn't go to the Doc ). As you say its a mystery as to why some see a specialist whilst others not. Sue x

  • Yea it took me a year to go to the drs, i started by giving up smoking, but ithink its a bit of a postcode lottery im afraid! good luck!

  • I also see a specialist nurse and she has been very helpful and it was she who sent me to the consultant, but your right it is difficult to get tests as surgeries have to pay for them out of their own budgets. You just have to keep pushing i think and say you will take it further if you dont get what u need! i think it also depends on your area and what resources are made available. I live in east midlands which is pretty low!

  • So sorry to hear that you had such a scary experience,I have experienced the same,& know how frightening that feels,especially whennot at home.

    You have had some great advice here,& I hope you follow through!

    One thing,it does amaze me the number of people that don't see a specialist for there condition,maybe due to the high demand.Over here,in Aus. You are immediately referred to one.If you are stable,you see him 2/3 times a year,when worse,about every 3 months,& of course see the GP in between.But then our population,is a lot smaller!

    Good luck with it all,let us know how you get on,love Wendells xxx

  • Wow that's good. If our population dropped they would decrease the amount of specialists accordingly... x

  • Not me and I have a similar problem exsaperated by COPD, PAD, CentralSleep Apnea, Inslin dependant type 2 & some chronic pain. But reading about you scares me for my future. I use Spirivia and Advair. I smoke 2+ packs a day from 16 yo 53. I was ID with moderate COPD in my early 50's and today at 67 I can say my breathing is about the same. I wish you the very best and pray you do't catch anny bacteria or virus theat effect your breathing. May stem cell research benefit all of us soon.

  • Could be an exacerbation, infection or not. Or even an asthma bout. X

  • You didn't mention and no one asked whether you'd had a weight gain since quitting smoking; it certainly made a difference with me when I got my weight under control and continued exercises, doing what I could and pushing myself. Even if you're healthy, putting on extra weight will make one 'breathless' and tired so added to other more severe health problems...., well..., you can see that given all together, it DOES add up.

  • well since started the steroids and given up smoking my weight has fluctuated, i was always about 12.5-13 stone and im 6', now i am probably about 15.5 stone, so not massive weight gain but i now have a bit of a spare tyre.

  • Of course, everyone's different but when I weighed 190 lbs (apprx. 14 lbs to a stone), I felt like a total slug and that was before I developed COPD; now, I keep my weight in the 175 range and feel much, much better. For anyone, the more weight that's carried around, the more difficult life in general is, I believe. Oh..., I'm 6'1". So you may wanna consider losing a bit of your poundage..., er, 'stoneage'....; Hang in and take care....

  • Thanks man, its the Haagen Daz m8! Thats what does it, now i dont have any vices left, its all i have, guess thats gonna have to go lol! Ah well! Hope your feeling ok! Simon.

  • One last tip:

    I used to consume gallons of ice cream as well but now have concocted my own nightly reward.

    I bake my own chocolate brownies but that's the end of the "fat stuff" in this recipe; I crumble one of those in my bowl and then add some blackberries, strawberries, yogurt, raisins, cinnamon and strained raw honey...., YUMMERS !!!!

    And barely a calorie in sight !!!!

  • Sounds like you had a rough time and whenever you have bouts like this it will really take it out of you.

    I am not sure if there has been any directives with regards x ray and consultant appointments but they are a lot harder to get now. It took me nearly 2 years to get a spiro test and then to see a consultant, who then based his prognosis on old CT and x rays but they did do all the lung function and jelly on the belly test and then decided on an x ray. You certainly need to speak to your GP for a deeper look at your issues.

    Be Well

  • Hi Simon and thanks for sharing your experience. I have during the last few months had three such episodes and knowing I am not unique helps. I was told that it was an anxiety attack which produced adrenalin which due to my inability to expend the energy caused my arms and legs to 'freeze'. The last time it happened to me was just as I was about to enter the shower and as I turned on the water I found myself breathless and unable to move at all. My wife was nearby fortunately and was able to rescue me.

    I gave up smoking 10 years ago and I had spent 17 years working in a saw-dusty and toxic chemical environment. I was diagnosed with COPD 10 years ago. Last Xmas my capacity was 32% but I was still able to walk for 20 minutes most days very steadily/slowly on a treadmill we have in the garage. In February we went on a 4 week Cruise trip of a life time holiday. During the voyage I contracted a chest virus which has left me 12 weeks later able to walk on that treadmill for no more than 2 minutes before I am totally disabled. Like you I am staggered at the speed of my deterioration. My Doctors have been very good and I have already spend days at Exeter Hospital cardiology because suspect heart condition may have been an additional problem and I am awaiting more tests. I am also waiting to see the pulmonary consultant at Exeter later next month.

    My own Doctor rather suspects that this last virus has pushed me into a more severe stage of COPD and perhaps Oxygen therapy needs to be discussed.

    I was involved in 'Breathability' for 5 years before we moved out of the area where it was based but it helped being a part of a weekly programme of light exercise. There I watched as fellow sufferers progressed through the stages of COPD and I wonder of that is simply what is happening at this time.

  • thx for replying, i have done some pulmonary rehab, and i have a dog who iused to walk everyday for about 20-30 mins as part of an exercise programme and continue the work done in rehab, its just that its been such a fast decline it just freaked me out, now i cant get to the shop and back without really struggling, its only 5 mins walk. i found it hard watching fellow sufferers as it gave me images of my own future and where i was potentially headed!

  • Hi soothsayer, I'm struggling at the moment feel more breathless than usual. My FEV1 is 32.5%. I exercise and try to be as active as possible. I work 7 hours 5 days a week and have to climb stairs often during the day. Just try to keep up with what you are doing and try not to think too far ahead. One of my brothers suffered with this and he kept very cheerful and active. Try to stay positive and active and not worry. You will make your anxiety levels soar if you do. Take care xx

  • Hi Simon, sorry to hear you have had such a fright with your breathing, I think your meds need to be checked, I agree with the others, speak with GP again or BLF, I have had severe COPD for 4 years with lung function of 42% and do get breathless when walking but I do my exercises every day and once a week still go to classes from PR, exercise is important with our condition but I know its difficult if there are other health issues as well, I do hope you can your breathing under control, take care.

    Jude

  • I jusdt would like to say a big thankyou to all of you who have taken the time to reply, i really appreciate and I dont feel quite so alone. Thx!

  • Hi Simon like you I have COPD level 4 lung capacity of 87 year old and I'm 52. I was diagnosed 10 years ago and for the first few years I stayed the same level walked the dog gave up smoking had my flu jab and it wasn't till I got a chest infection that I started to go down hill. I have a steroid preventer take that 3 times a day plus my blue inhaler I had a real panic attack while out with my dog the more I tried to breath the more I would panic.

    We are always hear to help we are all in the same boat hope you feel well soon

  • Thankyou, hope you feel ok!

  • Hi .... try a puff or two of Salamol (blue inhaler), using a spacer, about 10-minutes before going out. When out, pace yourself, don't rush & try to breath in through the nose, out through the mouth (pursed-lips, like whistling). Stop (to admire the view!) frequently ..... the dog won't mind - extra sniff time is a bonus.

    The 'attack' you had is something I know very well indeed ...... & it is very very frightening. You wonder if your heart will hold out. Until I learnt to recognise & control it I had incidents where my bowels have exploded .... fortunately not far from home, in quiet country lanes, on my own & where no one has noticed, but still hugely embarrassing, so I know only too well the horror of an attack ...... & it seems to take forever to get the breathing rhythm back to normal.

    I feel for you ....... but you will get on top of it.

  • thx man, its good to hear from someone who understands, it was one of the most frightening things ive had, its a fear u almost cant control! thx for taking the time!

  • Hi my name is Kevin from new Zealand I have the same problem, try blowing throw small tube, and blow up a balloon 2-4 times a day this has helped me

  • One of the hardest things for me is just getting used to the idea of being in this situation. Ive always been strong and active, used to go climbing, rigging, i was refurbishing an old boat that i was going to sail down to the med with a friend, and all that has had to stop, and at 53 its tough to take on board, also as it seems to have come quite quickly, this is what makes me a bit depressed about thiongs. And when u live alone it can sometimes be a bit overwhelming. I have never had to ask for help, people would come to me! I find m,yself in unfamiliar waters! Again a big thankyou to all of you who took the time to get back to me! I went to the dr this am and she is sending me back to hospital for a scan!

  • Sounds very much like my situation will keep in touch

  • my first attack like yours was about 8-years ago. I'm 62 now, I have about 10% lung capacity, I'm still here & in fact have just got in from seeing The Eagles at the NEC ........ life goes on, it just gets one hell of a lot slower.

  • were they good,? i heard about it on radio and wished i had heard about it earlier and got some tickets, mind you it can be quite a walk sometimes, even with the buses, saw Neil Young last year, your right about getting slower, i was always really hyper and lots of energy so walking slowly for me is again, all unfamiliar territory, but working on it!

    hope your feeling ok!

  • they were brilliant ...... particularly liked Koe Walsh - he's amazing, makes it all look so easy.

    If you get a Blue Badge (which you should be entitled to), you can park within 100ft or the front entrance)

    It was an expensive gig, but hell, I can't do Glasto & other festi's anymore ..... walking & mud & camping are just too off the scale for me nowadays .... & that's a real bummer.

    I just try & make the most of it the best way I can nowadays ........ sadly my days of rock & roll, backpacking the world & similar silly stuff are long gone ..... but at least I did it.

    But yea, The Eagles gig was up there with the best.

    Next one on the agenda ..... Robert Plant & the Sensational Space Shifters ..... a pre Glastonbury Festival warm-up in the grounds of Glastonbury Abbey - a Michael Eavis thank-you to the townsfolk. I've seen them before ...... probably the best band I've seen in the past 25 years. Excited.

    Hyper ....... that was me all over ..... always doing things, everyone's builder, car fixer, never stopping. My first breathing attack I had just climbed up on a roof .... scary. Not been up a ladder since.

  • sounds brilliant m8! i can totally relate to what your saying, i took a black bin liner with a few clothes in and a 1 way ticket to the states in 83’, stayed for 5 years, went all over the world in the music business, or parts of it i should say,loved adventure and not knowing what was round the corner, so to be stuck in just drives me crazy, i just got over hepc and got the all clear in aboput 2009. had about 2 yrs grace where i refurbished an old Hillyard boat, got her in water and then just about to start the last phase, the exciting one where u get to put all the toys in and i went down with this.

    Anyway glad it was a great gig, hope your feeling ok! all the best!

    I saw an interview with Joe Walsh, he can still play but he can barely put 2 words together with all the abuse.

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