Emphysema

[Joujou9]

Hi again thank you all yesterday for your supportive replys i just want to ask anyone here who have emphysema if your stay stable in your stage and for how long your been in your same stage

[pepapod]

I was diagnosed moderate 3 years ago and still at that stage.

[Gingerboy1960]

I have only been diagnosed for 19 months but my fev1 and gas transfer rate have not deteriorated in that time, in fact my gas transfer rate was 4% higher when tested recently. I hope someone who has been diagnosed longer comes along soon to give you some more reassurance.

[Ergendl]

I was diagnosed as top end of moderate in 2015 and had improved to bottom end of normal last year. Waiting for the annual review to see where I am this year, but suspect it hasn't changed much.

[powderpuff in reply to Ergendl]

This possibly is a daft question Ergendl, but normal as in before COPD?

[Ergendl in reply to powderpuff]

Yes. The computer print out still shows the obstructive curve, but at my last assessment I had 82% FEV1, improved from 69% FEV1. I followed a lot of the recommendations on here and now lead several singing groups, which helps.

[powderpuff in reply to Ergendl]

Ah, singing! In the hospital I was told how excellent singing is for the lungs & kind of dismissed it - my singing is awful, always has been, so I didn’t want to feel disappointing to people who maybe expect some kind of standard. But I will look at it again, results like yours are to amazing to ignore & there is a BLF singing group local to me.

[joycen60]

I joined the Singing 4 Breathing group in Northampton three years ago and it is one of the best things I have done. It really doesn't matter how well you can sing- it is just great fun, helps with breathing and you make some great friends to!

[jackdup]

I was diagnosed moderate in 2005 and still am moderate.

[Joujou9 in reply to jackdup]

I hope you have a good health. means 14 years.. What medicines you take Do you use oxygen and is your life just normal I want to rest assured I am very scared

[jackdup in reply to Joujou9]

I use an inhaler called Inspiolto and take vitamin D, Turmeric and a probiotic.

I lead a pretty normal life. I do not use oxygen and do most things I did before but obviously get winded more quickly then before. I would be happy if I did not have COPD but have had friends that have passed away from cancer and heart disease and many other ailments so there are certainly worse things. Being scared is understandable but don't let it get out of control. No one knows the future but there are many people with COPD who are considered stable, in other words they stay the same for years and do not deteriorate, so while it may be considered a progressive disease many people only progress at the same rate as someone without COPD so their level or stage does not change. Even healthy people without lung disease will see their lung function decline as they age and if you have quit smoking it is likely your lung function decline will not be any more rapid than someone without lung disease. Worry and stress is not good for anyone and only makes things worse so please try to keep things in prospective and don't assume the worst. There are members here who are very severe and are still working full time.

Don't get me wrong as I am not trying to sugarcoat it as it can be a very cruel and devastating disease and there are certainly many people who really struggle so don't want to dismiss their struggles.

Try to stay active, eat healthy, stay away from smoke and other lung irritants and the odds should be in your favour. A respiratory tech told me years ago she sees lots of people that seem to plateau and stay at pretty much the same level while others can continue to deteriorate, and even if you do deteriorate odds are it will be at a pace no more rapidly than a healthy person.

[Joujou9 in reply to jackdup]

Thank you for this message. I have been optimistic that I am new to this disease. I was very scared and I hope you stay healthy for a long time

[Hidden in reply to Joujou9]

What are your numbers

[bobbyfloyd]

mine has been stable for quite a few years, and long may it continue

[skischool]

Stages and numbers when your condition is mild to moderate are pretty much irrelevant to both you and your respiratory consultant unless there are sudden differences in your condition or lung capacity and/or you suffer multiple exacerbations and infections .on google and with health anxiety you can almost multiply them overnight.

I am stage 4 which is very severe emphysema but for various reasons i was unable to prevent my decline but it hasn't altered much for the last 2 yrs though with very little lung capacity left i require more oxygen on exertion.

Now with the knowledge you will and have gained as a member of our dodgy lung site you will adapt a healthy lifestyle and prevent and reduce decline to that of a normal healthy person

in summary you will not find what you are seeking which is a time and a duration when it all goes pear shaped because you are an individual.So cease your worrying and just Live for now.

Best wishes Ski's and Scruff's x