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I've been on this board many times both posting and replying but I failed to put this out there - I don't know how serious this is or not (of course my doctors never explain anything to me!) but when I was speaking to a COPD educator not long ago and she looked over my PFT numbers and just casually said the I was retaining carbon dioxide & she gave me my number which was 68. (my FEV1 was 76). How concerned should I be about this?  Does it mean I am in a more advanced stage of COPD -when I was diagnosed and tested a few months back they said I had moderate stage COPD.  Could this mean I am in Respiratory Failure and getting close to the end?  I am a shallow breather and sometimes I have to remind myself to breathe in and out (especially at bedtime when my anxiety levels rise) and I do have moderate sleep apnea and even with using CPAP nightly I still have 9 apnea episodes per hour.  It seems like too much is going on with my health and I really am starting to have a hard time coping.  Please, any advice or help would be so welcome, even if you can't put my mind at ease I would like to know more about what I'm dealing with.  All of my internet searches have given me no answers whatsoever! Please reply!

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  • Posted

    Moderate means just that and does not mean you're in end stages. If you can focus on that and work to maintain your current condition you might be with us for a long time. You're not on oxygen, much less on oxygen 24/7, so you're in much better shape than some others on here.

    Anxiety is never easy; anxiety plus serious health issues must be very difficult. Add in not knowing what all the terms mean and it's no wonder anxiety gets worse when you lie down at night. I have an exercise from healing Chi Gong that I use both to slow my heart rate if it's too fast and to calm my mind for sleep. You do it lying on your back in bed. P.M. me if you want to know more.

    Someone more knowledgeable than I am will pop in and be more helpful but in the meantime please remember that you are not in endstage COPD. .

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  • Posted

    Hi jeanette72 FEV1% at 76% is moderate by UK measurements, check http://patient.info/health/chronic-obstructive-pulmonary-disease-leaflet

    my Recommendations would be to ask for a referral to a pulmonary rehabilitation course where you can learn and be more aware about COPD and how to manage it and its symptoms, the course I attended many years ago in UK covered many aspects of the disease, including anxiety, depression, the best ways to help ourselves and avoid further lung damage.

    You are definitely not in end stage and there are many things you can do to slow the progress of the disease and even halt it so that you can best avoid getting to end stage.  The PR course will help you become aware of the do's and don'ts then its down to you if you apply what you learn.

    Often the pr education programme when applied can in addition help improve sleep apnoea symptoms and thus help avoid further complications.

    Do check out the Lung Foundation website in the country you reside and search and research pulmonary rehabilitation and its benefits.

    In UK referral to PR is through your GP  or Specialising Respiratory Consultant.

    Here is patient UK link on PR http://patient.info/doctor/pulmonary-rehabilitation

    If your symptoms are worsening and if any course of treatment for exacerbation does not improve symptoms its important in both cases to see your doctor asap and communicate your symptoms etc.

    If your doctors never explain anything to you, regarding carbon dioxide retention or anything else, just ask your doctor(s) to explain.  

    You might find this page useful also regarding how the respiratory system works and reference to CO2 retention generally:  

     When the level of CO2 rises, the sensors send electrical impulses to the brain. These impulses cause the brain to send more electrical signals to the muscles of breathing. Breathing then gets deeper and faster and more CO2 is breathed out (exhaled). The blood level of CO2 then decreases back to the normal level.


    With emphysema for instance (under the umbrella term COPD) the alveoli sacks stretch and it becomes more difficult to exhale all the carbon dioxide which makes breathing more difficult because any alveoli sacks that retain carbon dioxide means there is less room for oxygen to fill the sacks.  Even so in moderate stage of COPD there is still much we can do and be active.  

    Going back to the PR course there are breathing techniques you can learn which help expel more carbon dioxide from the lungs and help breathing and achieve greater ability to maintain activity.

    However many of the things we can do to help ourselves required persistent effort over the years and that is down to the individual.


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    • Posted

      Hi Vee2 you seem so very helpful and knowledgeable that I'm hoping you might be able to help me I have emphysema I was diagnosed in my early 30s I was put on oxygen for 15hrs a day but I have since given up smoking which has obviously helped and no longer on oxygen but my problems are that I'm forever getting chest infections they clear up but always return so my consultant sent me for breathing tests and I had to also do a walking breathing test which I've never done and something must of come back on it as now I have to go for an ecg test plus wear a heart monitor for 24hrs I've never done this and I'm very worried what could possibly have been shown on breathing tests for this to happen any advice or help from anyone would be most welcome desperate and very concerned Thanks

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    • Posted

      Hi Claire, you do need to try and avoid chest infections, if you haven't been on a course ask to be referred to pulmonary rehabilitation which will help you manage your symptoms better and hopefully help you preserve lung health if you take note of all the things you learn on the course both helpful and things that are not helpful for lung health.  Also make contact with the lung foundation in the country you reside, or maybe you can access information through the hospital or your GP surgery..

      Diagnosis at age 30 hopefully you have had alph1 eliminated from the equation.  http://patient.info/doctor/alpha-1-antitrypsin-deficiency-pro

      I've had the walk tests and 24 hour monitor and ecg test, these I had done in the early days of diagnosis, its to be sure the breathing related problems are not also cardiac related, (symptoms are similar).

      The 24 hour monitoring for the heart rate, blood oxygen and can indicate if sleep apnoea is a problem,  its good the hospital is checking all these things, to be sure they have not overlooked anything,.

      In the walk test I did at the hospital, I was wired up for heart monitoring, blood oxygen, pressure, pulse etc, so there would have been indications on the walk test if there was some difficult on the gas exchange, heart rate pulse etc.  There was when I did it but it turns out nothing that can't be managed.

      Keep in mind we are bound to have more difficulty with damaged lungs but investigations are sometimes just that, they may reveal something else that needs treating or they may not.  Try no to worry too much, easier said than done I know.

      Just go through the motions of having all the tests done and then wait for results, ask how long the results will take and are these going back to the consultant or your GP, I expect if the Consultant you may have been asked to make an appointment to see him or her, but if not once you know the date the results are due back with your doctor for instance make an appointment to see your GP to get copies of results and discuss same.  

      With repeated chest infections if you haven't already done so, you should get your sputum tested to be sure you are getting the appropriate anti biotic.  Avoid people with colds and flu symptoms and get the annual flu shot and talk with your consultant about a pneumonia shot also if these have not already been offered to you, these are recommended for people with diagnosed lung damage.

      Best wishes for your test results and hope you are soon feeling better and your lung conditions becomes stable.



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    • Posted

      Thanks for your quick reply I do have both those injections as I'm diabetic to I've got them heart tests tomorrow 21st sept I'm going to ask them why am I having to have them also find out when results will be back just gotta cross everything hope everything's okay

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  • Posted

    Two brilliant replies for you there..

    My own two-penneth is that, as a fellow 'retainer' but with Fev1 of just 17% ....

    - go easy on oxygen as too much oxygen, especially at night when your breathing is shallower, can actually make things worse rather than better because the extra o2 will generate more co2 which. if you can't get rid of it, can render you unconscious very quicly ... even mid-sentence as happened to me 3 weeks ago

    - it'd be wise to carry a card saying that you are a retainer so that, if you do lapse into a coma, you are not given too much.

    Chin up, there are lots worse off !

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  • Posted

    High level of CO2 in your blood means that you have a gas exchange issue or retention.....You tend to breathe i enough oxygen (Use your oximeter as a guide) but have difficulty getting rid of the carbon dioxide and so the build up......Yes it can be very dangerous if levels go up by degrees past the 60's....and in the worse scenario one would need to go to emergency and have a NI. Bi-Pap which endevours to do the exchange for you......Only an ABG can determine how much CO2 is in your blood......For the majority of people blowing off this excess gas is done by PLB which should become second nature.....For those who's Lung Capacity can no longer do this should endevour to keep their Sats between 88% - 93% but it is usually those on supplement oxygen by then.......Also the effort to get rid of the excess can cause the heart to work twice as hard so it can lead to cardiac problems, so an Echo Scan is advisable to check for Pulmonary Hypertension or other possible issues.....

    I would kill for a Fev of 76 as i am around 15% and still manage quite well all things considered.....The most important thing with this disease is to exercise every day......walking or low impact but just keep moving....

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    • Posted

      I've been trying some of the recommended breathing techniques I found on the Internet, like deep breathing & pursed lip breathing but as a person who's never did proper breathing I don't know if it's helping. With my nasal allergies and chronic sinusitis and my sleep apnea I've always had a problem inhaling & exhaling properly. Lately when I try the deep breathing exercises I've been experiencing sharp pain in my diaphragm and ribs so I try not to breathe too deep. The deeper I breathe the more pulling and pain in that area.I wish they would explain this at my Pulmonary Rehab classes but they just concentrate on the machine exercises and weights. I guess my oxygen numbers are OK ( I don't use any supplemental oxygen) they are usually around 95 at rest, then go up to maybe 96-97 when I'm being a little active, but when fast walking sometimes it drops to 90-92. My pulse always stays around 58-60. I just don't feel like my doctors or therapists are giving me more information on how to attack this disease more vigorously. I won't be getting more pulmonary function testing again until March so I'll be nervous about the progression until then. Just hoping I'm not doing myself more harm than good because of how I breathe.


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    • Posted

      Hi...First off tackle your sinus and nasal issues....Blocked nasal passages could be for any number of reasons, so try doing a sinus rinse a few times a day and just prior to bed....This is a Squeeze Bottle with a pre-mixed saline powder....They are cheap to buy at any Pharmacy and it has more or less replaced the old Netti Pot.    Boil some water in a bowl,  add some eucalyptas oil and cover your head with a towel....Breathing in the steam will also clear a stuffy nose...Allergies are much harder to pin-point, so avoid the usual irritants and maybe take an allergy med available over the counter....like Montellkast or Zytec or whatever the Chemist suggests.....

      I have a serious gas exchange issue, so i must watch my oxygen numbers....The only way to do this is by using a pulse oximeter....I need to keep my saturation between 88 -93% at rest with or without supplimental oxygen.....While active i need oxygen and even if it goes up around 97% , PLB will usually blow off the CO2....With your Fev. I don't see any issues where the CO2 will reach dangerous levels so the need for NI Bi-Pap in ER....this is usually the time the heart becomes problamatic as it needs to work harder to compensate for the lungs.

      The pain also could be a number of things but if it is Pleural, an X-Ray or Scan will pick it up and it can easily be sorted out....The other pain could be intecostal muscular pain, or hyperinflated lungs rubbing against ribcage/diaphragm, but doubt it in your case. I would get an x-ray and suggest they check for signs of pleuricy or a build up of liquid in that area, which ''MIGHT'' be warning signs of a collapse in a section of the lung....This fluid can be drained out and it is a pretty simple procedure.

      Other than that i feel you are pretty ok, so try n do your breathing exercises at home or other low impact ones......Takes time to build up endurance so don't push yourself too much........

      All the best..xxxxxx

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  • Posted

    A lot of people with COPD suffer c02 retention (which i do). It does not mean you are getting worse so please do not worry. Co2 retention is a build up of carbon dioxide and this happens because when we sleep we breath very shallow and do not blow off the carbon dioxide so it builds up in our system. It is treated if it gets very high because it will make you wake with dreadful headaches plus confusion and feeling sleepy. They treat it by using a nippy machine during sleep which you are already using . They will keep a regular check on it but if you suffer from any of the symptoms i have mentioned let them know but its nothing to panic over
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