Emphysema rate of decline ?

[GeoffSpark]

Hi, My name is Geoff

I was recently diagnosed with emphysema ( FEV1 / FVC ratio = 65% ) but my FEV1 is 104% normal & FVC 119%.

I am 63 & stopped smoking in January after 40yrs.

Like many people I am worried about how quickly I will decline. I read all sorts on the internet -- 5yrs ? 10yrs ?

Would love to hear from people who have been living with emphysema, how it progressed & any advice.

Thankyou

[Danielmystar]

Hi Geoff I also used to read alot on the Internet like you I read 5/10 years worried me alot but I was diagnosed 22 years ago I am stage 4 still here lung function last June was 23percent ive got worse since but I try to keep going the worse thing is to keep reading on Internet there's alot of people on here that will help as much as they can im also on Facebook joined some sites which had great information.

[GeoffSpark in reply to Danielmystar]

Thanks for the reply Daniel & hope you are well. Yes people seem to warn you away from the internet --- curiosity killed the cat I guess. I'll just plod on as best I can & try to eat more healthily & keep active as long as I can. Take care

[PaulineHM]

Hi Geoff,

Sorry to read about your diagnosis but you ask a great question!

There are lots of things we can do to improve the quality of our life.

The main things are to :

Stop smoking - yay, you have already done that!

Take any medication as prescribed.

Get vaccinated- Flu, Covid, Pneumonia

Try not to pick up colds and respiratory infections. If you do, see your GP as soon as you can for discussion about medication to manage it.

Get fitter and stay fit - although you at already be super fit.

Eat as healthily as possible. Not too many carbs.

Try to live in a clean air zone - indoors and outdoors.

Keep in touch here and join support groups - online with Asthma Lung UK.

Practice relaxation

Enjoy each day.

Go well

Pauline

[GeoffSpark in reply to PaulineHM]

Great advice Pauline thanks. Yes I will ask my doc about vaccinations & a "rescue pack". I'm worried about cold & virus because It was a cold/virus I got over winter that turned into bronchitis that seemed to make my breathing a lot worse than previously ( I think they call this an exacerbation ) I had noticed I was breathing a bit heavier when exercising before that but the virus seemed to promote a quick drop in my lung health.

I do exercise , I'm retired but do part time gardening & want to keep this up as long as I can as I really enjoy it & yes I've managed to give up the tabs but I must try to eat more healthily

Anyway - thank you very much for your response & I hope you are well

[PaulineHM]

Hi Geoff,

Sounds like you are doing really well.

Exacerbations (flare ups ) are tricky things. It takes a while to recognise ( for me anyway ) to realise what is happening. It is good if you can get a handle on it asap. And they don’t always need antibiotics but always need steroids. So steroids are my go to first. A symptom diary can be helpful at these times.

Winters are for me the toughest time.

I was diagnosed 21 years ago- still going strong with some adjustments to life. There’s a lot of life to enjoy.

Look after yourself.

Go well

Pauline

[GeoffSpark in reply to PaulineHM]

Thanks Pauline -- I'll mention steroids to the doctor 👍