My FEV1 ranges between 52-60% before bronchodilator and 62-68% after bronchodilator. I have never smoked and am a healthy weight. I am really concerned about the natural loss of FEV1 with age, given that I am still relatively young. My FEV1 in absolute terms sits at around 2.65L (I am on Symbicort 2 puffs twice a day), and my mathematics tells me that if I lose 20-30mL each year with age (which I believe is accurate) then I am going to be in trouble in the years ahead, even if I do feel relatively OK currently. Would be incredibly grateful for any information or if anyone could help to put my mind at ease. My specialist seems a little perplexed because I never had any symptoms other than a really mild night-time cough/wheeze at times, and then when I had my first ever lung function test in October of last year, I was diagnosed as moderately-severe obstructive disease. I have been trying to exercise a lot to help things and have started swimming recently (swum 50km over the last 2.5 months). When I had lung function yesterday though, my FEV1 was still stable which was deflating, as I had been hoping for an improvement. Does anyone have any advice on what else I can do to improve my FEV1 so that I have more space-to-move when my FEV1 naturally reduces with age? I am worried that my situation is not dissimilar to COPD, though I have never smoked and my FEV1 is at least partially reversible. I am not sure if this is the case? Thanks so much for your help.
Hi all, this is my first post. Would ... - British Lung Foun...
British Lung Foundation
Hello, Well try not to panic firstly and yes you are young and also keeping fit very important, I would call the BLF help line to have a chat to one of the Nurses who at least could possibly give you more information and help put your mind more at ease.
Apart from that don't read too much on the net and seek advise from professionals that you are under as everyone has a different case and try not to worry too much .. You can always go to another Dr if your not happy but be sure that you get the best advise and team to advise you .Also don't try looking years ahead and stressing about what might be, our bodies are strong deal with today and not years ahead or you will be always worrying..
Hi, I cannot help you with anything technical but I just wanted to say that I was a chronic asthmatic for years until I stopped eating dairy and egg whites. I personally think that asthma is an allergic disease, usually to milk proteins or sulphites. I hardly ever need an inhaler now after needing one daily since childhood. I hope that you manage to find the way to improve your lung function too x
Hello Rich - has your specialist done a blood test to rule out Alpha-1-Antitrypsin (sp?). This is a form of COPD which occurs due to a missing enzyme and often when younger people who haven't smoked show signs of COPD, this is something docs look for - it's unusual for someone as young as you to get COPD, so that could be a possibility. But its a myth that only smokers get COPD - its now recognised that many others who haven't but who have been exposed to a variety of pollutions can get it too, as well as genetic susceptibility playing a part. Some forms of asthma also come under the COPD umbrella.
Keep the exercise going - you sound amazing - and try not to take too much notice of the numbers. Im down to 38% Fev1 now yet i've never felt healthier, despite having had to use oxygen for 4 months following an exacerbation - now off it again after a regular exercise regime. Im older of course but managing fine on just under 1L, but everyone is different.
Re allergies, to experiment with dropping certain things from your diet is a good suggestion, and particularly calling the BLF helpline - click on red balloon at top right of this page.
Take care and good luck.
Really good reply from O2 above re the alpha 1 deficiency. I would deffo ask for the pin prick test and also tests for any aspergillis (fungal) present in lungs. Please don't panic, I' ll be back later to give you my ideas when I have a bit more time. I was similar to you. Undiagnosed asthma etc ...... Really well now I'm on right meds, exercise etc. Spk soon P
I'm A1AD (Alpha 1 Antitrypsin Deficient), which has progressed into severe Emohysema.
I was always fit & active, a (virtual) non-smoker & not exposed to heavy or unusual pollutants. It's a genetic thing & it's a damn pain up the wotsit.
Being tested for A1AD is simple ..... just a minor blood test. Ask your doctor & he/she should do it without question.
If they won't, contact Mrs. Rebecca Bray who co-ordinates the ADAPT Project up at Queen Elizabeth Hospital in Birmingham .... & ask her if she could send you a 'finger-prick testing kit"
For contact details click the link below & scroll down to the bit just above the 'Fund Raising' section ..... you might also read the rest of the link to find out all about the 'exciting' world of A1AD
Good luck .......
I don't have asthma but have Stage4 very severe emphysema. As O2Trees has said, don't take any notice of the numbers. My FEV1 has been 18 to 20% recently but has gone back up to 26% which is the same as it was when I first got diagnosed 3 years ago. I still work, drive, go shopping and do most " normal " things but do it a bit slower. Just keep active.
Hi Rich123, welcome to the site with your first post, it was very informative. The advice above is very sound just have one suggestion that might help, as an asthma patient maybe Asthma UK which can be found on line might have helpful information to offer and more detailed advice for your illness. But as seen there are others on here with similar problems as yourself with breathing. Hope you get answers soon, most of my family have asthma and it is normally reversible whereas COPD amongst other lung conditions are not. ask questions and take care.
Hello again, a proper warm welcome to you that I didn't have time for before.
We are mentioning the alpha 1 because of your young age Rich. I'm suggesting you have the test to eliminate it.
If I were you I'd be wanting to find out exactly what I have and why, with that knowledge you can ensure you get the best medication regime tailored just for you. We're all different so what suits one may not suit another.
If I were you (and knowing what I know now) I'd also be requesting skin prick allergy testing and I would want a CT scan to see what damage (if any) I have in my lungs.
If I couldn't get an NHS referral for CT then I would beg borrow or steal for a private one.
This scan, rather than an ordinary X-ray will show everything there is to see.
Sometimes if we have susceptible lungs there can be some damage from childhood diseases like whooping cough, measles, chronic bronchitis or pneumonia.
These can take their toll in later life so you can imagine, if folks smoke for years a lot of further irreversible damage can be done.
As a child I had a horrendous barking cough for years, was very sporty and couldn't understand why I didn't have the stamina to match my enthusiasm. Of course I now it was asthma, undiagnosed & which reared it's head in my late forties when I was diagnosed.
I sailed along for a few years with a low dose preventer 2 x daily. A blue reliever on rare occasions when extra wheezy and before exercising ....... Until about Feb 2009 when I had pneumonia 5 times in 18 months followed by many debilitating chronic infections.
Finally, my meds are right, I take them properly & the result is the best winter I've had for years.
Knowledge is power.
Learn as much as you can to protect, preserve and care for your lungs. This can include avoiding smoke, fumes, chemicals, dust, DIY dust, birds, mould, dampness, extremes of temperature. Keep up you great exercising and eat well.
The minute you feel chest congestion drink plenty of fluids to keep mucus loose and get it out of your lungs. At the first sign of bugs get your lungs listened to. Keep your immune system tip top.
One thing I think helps me a lot is a medication called Montelukast for the allergic aspect of ashma. There are different kinds of asthma though
Some people find avoiding dairy helps, I tried this and it made no difference for me so I can still enjoy my skinny lattes and yogurt!
I wish you all the best for a healthy happy future. Don't hesitate to ask any more questions. Peeg
Has anyone else seen the film "SuperJuiceMe" ? I found it inspiring and have definitely improved since adding juices to my diet and removing all processed foods. Looking forward to reducing/stopping my medications.
Hi all, thanks so much for your support and advice. It means a great deal to me. Can't thank you enough. I can provide a little bit more detail that I missed in my initial message. My alpha-1-AT result was within normal range at 1.55 (range 0.9 - 1.7). I also had a HRCT and there were no findings (no bronchiectasis, lung parenchyma preserved, trachea and major bronchi are clear, no focal pulmonary infiltrate). My RAST testing was positive to rye grass and dust mites but negative for aspergillus. I also had skin pinprick testing and was positive for rye, grass, plantain, birch, house dust mite, cat, histamine, plane tree). I had pathology autoantibody testing and this all came back normal. I was on a 3 week course of Prednisolone late last year when first diagnosed to try to lift my FEV1, but it made no difference at all.
My Vitamin D was just below normal when tested late last year and I now take one capsule a day which has brought it back within range. My specialist has put me onto n-Acetylcysteine (NAC) since the start of this week (600mg x 2 each day). Does anyone have any experience with NAC? Will it make any difference at all to my FEV1 scores? I did try Green Lipped Muscle Extract a couple of months ago (which I believe has a similar mechanism of action to Montelukast) but I ended up with an unusual rash on one side of my pelvis area, and my GP took me off it straight away.
I have so many questions running through my head all the time and it is hard when I only see my specialist every 4 months to be able to ask some of them. If I could throw the following questions out there, I'd be really thankful for any comments in return just so I feel more informed and hopefully less stressed/nervous:
* Is there any evidence to say that exercise can improve FEV1? Different respiratory specialists have told me different things, but my main specialist says that although exercise is great for cardiovascular health and keeping fit, it won't affect FEV1.
* Is there any chance that my FEV1 may improve to 75-80%? I'd feel so much better if it was at this level. I hear stories of people who "grow out of their asthma" in adulthood. My mum is one example. She was asthmatic in her 40's and even needed to be hospitalised once, but now that she is approaching 70 she has no symptoms at all. If I grow out of my asthma, is there a chance that my FEV1 may rise again? Or at least, can it happen that a person's FEV1 can stay stable for say a decade rather than declining? My specialist says that FEV1 won't start to fall until age 45-50, but all the information I can see online seems to suggest that it begins to fall at more like 25-30 years of age.
* One strange symptom that I have recently is large reflex involuntary inhalations, almost always when at rest. For example, I might be sitting watching TV just breathing normally and then all of a sudden I do a single large inhalation without any consideration. It has only been happening for the last couple of months. Has anyone else experienced this?
* With the information that I have provided, do you think I am simply asthmatic or does this sound like COPD? I have never smoked, have no known exposure to pollutants and have normal alpha-1-AT - but can a person as young as me still have COPD if these things do not apply? Part of my worry is because I have had congestion for the last 2 months, which I never had before. Is this also a symptom of asthma? Fortunately, I do not have any cough at all other than needing to clear my throat. Does COPD always show up on a HRCT?
* If I am at around 60% FEV1 now and am being managed on Symbicort, is it likely that I can maintain that level of 60% for the years and decades ahead, even though the absolute value will fall? I am confused because the normal FEV1 for a 33 year old male of my height/weight is 4.5L and for a 83 year old male it is 3L. So this tells me that if my FEV1 falls at a normal rate, I would lose 1.5L across 50 years. That means my FEV1 would fall from 2.6L to 1.1L at age 83. However, 1.1L is much less than 60% of the normal FEV1 of that age (3.0L). Can someone please explain how this works? Also, which value for FEV1 should I consider as the reference - my value pre- or post-bronchodilator?
* What is the lowest FEV1 percentage or absolute FEV1 value (for a male, 6 foot tall, 84kg) that I can be at before I really lose quality of life. Some of the posts above give me an idea that it can be quite low. Is there a value under which a person cannot live a normal life?
* Regarding dietary changes, is there one main food type that is most likely to exacerbate asthma that I should try do do without?
* I haven't had a bconchoscopy yet but I think I would benefit from one just so we can see exactly what is happening. I keep suggesting it to my specialist, but he is putting it off and saying maybe we will consider it next time. Is it necessary?
* Is peak expiratory flow important at all. Since I have started swimming my PEF seems to have improved according to my results even though my FEV1 is static. Does this mean anything?
Thanks again for all your comments so far. I have read them over a couple of times. Would love all your feedback on the questions above please. Cheers, Rich.
Exercise can certainly improve fev1 in case of asthmatic persons. There are a lot of scientific evidences available online which support this claim. However, they say the degree of improvement is highly variable.
/* My specialist says that FEV1 won't start to fall until age 45-50, but all the information I can see online seems to suggest that it begins to fall at more like 25-30 years of age. */
I believe 25-30 is when lung function starts to decline.
/* I am confused because the normal FEV1 for a 33 year old male of my height/weight is 4.5L and for a 83 year old male it is 3L. So this tells me that if my FEV1 falls at a normal rate, I would lose 1.5L across 50 years. That means my FEV1 would fall from 2.6L to 1.1L at age 83. However, 1.1L is much less than 60% of the normal FEV1 of that age (3.0L). Can someone please explain how this works? */
I did a fair bit of research on internet regarding this. Generally, you should stay at a given % of fev1 if the variables that caused the decline in fev1 are removed. 50* 30 mL is over simplistic ( the researches which say there is 30 mL loss of lung function only indicate that after stopping smoking the loss in lung function is in line with normal ageing) .Please refer Fletcher curve.
/* What is the lowest FEV1 percentage or absolute FEV1 value (for a male, 6 foot tall, 84kg) that I can be at before I really lose quality of life. Some of the posts above give me an idea that it can be quite low. Is there a value under which a person cannot live a normal life?/
Every person is different. Not all people with 100% fev1 can hold their breath for 17 minutes ( David Blane did it). Same is the case for those with compromised lungs. droo32 has explained it beautifully. But as long as you exercise and have an active life style you should be ok.
I have no answers for other questions you have raised.
Above all else get the diagnosis right, because your case seems odd. No smoking, normal A1AT -very likely you donot have COPD. Im also tempted to suggest not to worry about what will happen 50 years from now.
I can't answer many of your questions but there is an RRT at this website that will answer your questions for you, It is best if you have all of the numbers from your spirometry and present them to him and that way he has the information he needs to answer your questions.
Close to the bottom of the page is the link you click on to ask your question.
My you have a lot of excellent questions that your should ask your specialists but I will give you my take. It sounds like you are doing all the right things with the exception of worry and projecting into the future too much. In regard to some of your questions....
*NAC is a potent anti-inflammatory that has the potential to aid in the airflow of the small airways. Any effect will not be significant but it will help to clear any expectorations and could potentially help to preserve lung function in the long term.
*There is no evidence that exercise can improve FEV1 in COPD however refractory asthma is a different disease (although some still classify it as a phenotype of COPD) as the pathology involves predominantly scarred and obstructed airways with very little in the way of destroyed tissue, i.e.: emphysema. This is confirmed by the fact that your diffusion for CO, a very sensitive indicator of emphysema, is normal or even slightly elevated.
*There is always the possibility you FEV1 could improve with new or even current treatments that you have not tried yet. It is very common for people to grow out of their asthma however some asthmatics depreciate further and are stuck with reduced lung function for life. Recent studies have shown that moderate/severe childhood asthma is a risk factor for a COPD diagnosis of never smoking adults (despite the difference in pathology compared to chronic smokers). This is mostly about semantics between refractory asthma and COPD - despite differing pathophysiologies they both fulfill the definitions of COPD. There is also the possibility your FEV1 could remain stable for many years or even decades - no one can really predict the future with obstructive lung diseases. Your citation that lung function peaks in the late teens or early twenties (depending on sex), and then begins to decline in the late twenties is correct in spite of what your specialist told you. However the lung is a very dynamic organ and there a common deviations (up and down) between days or times of day or even years.
*I do not have any asthma, I was a smoker in my youth, and have never experienced or even heard of the involuntary inhalation symptoms you refer to.
*With the information that you have provided it sounds like classical refractory asthma. Again there is some questioning on the definitions of COPD and how that differs from refractory asthma, since refractory asthma does meet the diagnostic definition of COPD, however I can tell you that given the information you have provided you have a disease of the airways and NO emphysema. Young people can and do get COPD even if they have never smoked. In 35 year-olds half of the COPD cases are related to tobacco and another half are related to early life events like infections or if the mother smoked etc. It all depends on how you want to define COPD as I have already mentioned. The NAC will help with the congestion and it may be safe to even increase your dose. Generally, I believe many COPD patients take 1800 mg of NAC a day. Yes, congestion is a symptom of asthma. An HRCT will almost always show emphysema or other patterns typical of COPD although it may not show asthma or air trapping without utilizing sophisticated techniques that are just now being developed such as comparing inspiratory and expiratory scans densitometrically.
*No one can predict how you lung function will decline, improve, or maintain. If you fall at the average age related rate of 20-30 ml/year and you are currently at 60% predicted, the percent predicted will slowly decrease. This is because you have started from a lower baseline. For example, losing 25 ml of 5 L is an annual loss of .5%. If one is expected to lose this much then their percent predicted will maintain the same since that is accounted for in the prediction equations. If on the other hand one starts at 60% of the 5 L predicted, 3 L to be exact, losing 25 ml would equate to an annual loss of .83% predicted with an excess of .33%. This excess of .33% is not accounted for in the prediction equations and thus the overall percent predicted will inevitably decrease. This is just the way math works, I don't know how other to explain it than it's a function of starting with a lower baseline. Yes you may end up with lousy lung function in old age however many people end up that way very or at least relatively young. CF patients are expected to die by their 40th birthday and many people die of COPD, IPF, ARDS, pneumonia, or other lung diseases in their 40's, 50's, 60's etc. That's decades away for you however and many things could change in the meantime. Or, you may not even decline, who knows? Try not to predict and speculate so much on the future, live for today! For asthmatics I believe you want to refer to your post-bronchodilator reading.
*It all depends on what you consider a normal quality of life. Literature I have read states that many COPD patients can function without aid with an FEV1 of 1.5 L or even down to 1.2 L. From personal experience I know a lot of COPD'ers that get around with less than a liter - some on O2 only at night or with exercise, others on it full time. But all these people are well into their 50's, 60, and 70's and smoked for many decades. Will you be running any marathons any time soon or when you are in your 60's - unlikely but also possible. People have ran marathons whilst missing an entire lung. Will you be climbing Mt. Everest when your 65? I doubt it but who knows.
*You should avoid any foods or other allergens for that matter that elicit symptoms or decrease your functioning. These are specific to the individual so it's a trial and error process though generally anything that produces a lot of phlegm and mucus is probably a bad idea. I would suggest getting a handheld spirometer of peak-flow meter to test this out.
*I don't know if you'll benefit from a bronchoscopy though you may and there may be some novel treatments related to bronchoscopy that could dramatically increase your lung function. Look-up thermal bronchplasty. I don't think an examination would hurt anything.
*PEF is more a function of larger airways whilst FEV1 is a better approximation of overall airway function. If swimming give you some improvement I would keep doing it.
Hope I helped a little. Good luck Rich!!
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