copd can anyone give advice

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Hi My husband has had copd for some time, but we didnt know what stage he was at, he has been for tests and now has been told he is between 3 & 4 can anyone tell me how good or bad this is. Thank you Christina

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  • Posted

    I hope someone here can help you with the information you want, and I would be interested to hear about these things too.  I was diagnosed with COPD in 2007, and I've never been given any information about stages, risks, health indicators, medicines or anything at all. I go for a couple of check-ups (spirometry, etc.) a year, and see my GP about respiratory problems about six times a year, and get prescribed inhalers, but I never get given or sent any information about my condition, or how it is progressing. Is this the experience of other people with COPD, or am I attending a poor health practice?
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    • Posted

      Hello BadNewsBrain

      Education is a key component to managing COPD and delaying its progression.

      There is much to learn that can benefit you and give you some degree of control over your future.

      I think the health practice should and could have done more to help you along the path.  And my advice is for you to call the office and request a referral to a program for COPD ~ It is an outpatient program usually held in the community and done via referral of your physician.

      They will teach you and answer your questions.

      The one I attened was about six session long, just an hour or two each time.

      Perhaps there is one offered through your local hospital or public health and I urge you to investigate this.

      Lill

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  • Posted

    Hi I won't lie to you - between stage 3 and 4 is quite bad.   Having said that however there is a lot he can do to try and hold it steady and not progress a lot more.   No smoking,  having a healthy diet,  and exercise is very important.   Also is taking his meds and learning to recognise when to ask  for antibiotics and/or steroids  

    Many copders have rescue packs for home use for weekends and holiday periods so he can start treatment right away.   Any exacerbations (worsening of his symptoms either through infection or from another cause) need immediate treatment,  otherwise they can further damage his lungs.   Don't be afraid to take him to A and E if he needs it.  As a doctor once told me it is better to err on the side of caution than not seek help when it is needed.  

    I am sure others will be in soon who know much more than me about copd.  x

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  • Posted

    I wholeheartedly agree with Hypercat but would go a step further - if you are in any doubt about the seriousness of an exacerbation and you are un the UK, dial 999 and ask for paramedics. Things can happen fast when one takes a turn for the worse - I went from a slightly breathless person to a comatose lump in well under 10 mins. This was very frightenining for my wife so she would not exactly have been in a fit state to drive 20 miles to A&E even if she could have dragged me into the car somehow !

    Don't worry too much about the numbers chanted at you - everyone is different and just make the most of your lives while you can.

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  • Posted

    Christina

    Stage 3 COPD is classified as being severe and Stage 4 is classified as being end stage according to the gold system.

    People have varying symtoms with both as COPD is not the same for everyone.

    Basically this indicates the lung functions are very poor and serious.

    Have you been offered any support for your husband and yourself?

    Lill

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    • Posted

      Hi Lill I have to slightly disagree with you again I'm afraid - sorry.  The term 'End State' isn't usually used any more because people can live a long time in end stage.  I know quite a few from another site who have for a good 8 years and they are going nowhere fast! 

      I also know many others in stage 3 who have good lives despite their illnesses.  x

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    • Posted

      Hi hypercat

      ​I totally agree with you - the phrase - End Stage - is obsolete to the extent that its general interpretation that the end is nigh. I have been at Stage 4 for more than 9 years and I am still around (alive and kicking as it were!). It is my suggesting that we consign te term to the dustbin!

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    • Posted

      I think though that the term is not meant to imply impending death.

      It is meant to reflect it is the final stage of the disease.

      There are no more stages after the fourth stage/end stage.

      It is a grading system. Taken from the Gobal initiatives guidelines.

      It is a grading of air flow, not of projected longevity.

      A matter of terminology and interpretation I think.

      Lill

       

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    • Posted

      Yes, but to the newbies or their carers do not realise this and therefore its

      general use needs to be avoided - such is my previous suggestion. GOLD should also remove its use.

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    • Posted

      Good on you Martin and long may you carry on.  Years ago end stage meant just that,  but nowadays with improved treatments and new discoveries being made,  it is not as accurate as just stage 4.  Stage 4 is also a lot less emotive than 'end stage'.  Which is why this term is not being used like it was.   x
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  • Posted

    Hi Christina, that doesn't really make any sense, but having said that it could well depend what was being referred to stages or other and what country you may reside in.  

    If referring to patient UK information being between 3 & 4 if that means between stages 3 & 4 it still is wishy washy in formation.  If I were you I would ask for a copy of your husbands recent spirometry results with that information you could use the spirometry calculator to get more of an idea what stage your husband may be at.

    Even knowing your husbands spirometry results indicating the stage of COPD; when the condition is stable its a big plus than when at the same stage the condition is unstable.  So you see there are many factors that relate to how well or not a person is doing.

    For Patient UK stages:- https://patient.info/health/chronic-obstructive-pulmonary-disease-leaflet

    COPD is divided into mild, moderate and severe groups, depending on the level of airflow obstruction. The airflow obstruction is the FEV1, measured with spirometry.

    Mild (stage 1) COPD is an FEV1 at least 80% of predicted value.

    Moderate (stage 2) COPD is an FEV1 between 50% and 79% of predicted value.

    Severe (stage 3) COPD is an FEV1 between 30% and 49% of predicted value.

    Very severe (stage 4) COPD is an FEV1 less than 30% of predicted value.

    If you get a copy of your husbands spirometry results, you can go to the spirometry calculator page to find out the FEV1% and thus which stage you husband may in.

    The spirometry calculator page is here:  https://patient.info/doctor/spirometry-calculator

    Keep in mind also that spirometry test can fluctuate, they can show improvement and deterioration, if your husband has a lung infection for instance, or pollen count is high, he has sinus problem at these times his lung function may not be as good as on another day when he is feeling relative good, ie no chest infection, no sinus problems, nothing irritating the airways etc.

     

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