Very Severe Emphysema at 41, but feel OK

[Joeco]

Hi everyone. I’m new to this group, but have found reading some of your stories really useful.

I’m 41 and recently diagnosed with very severe emphysema. It’s come as a big shock, to an extent. I’ve never been a big smoker, mostly socially, but have had a long history of asthma and allergies affecting my breathing. After many many years going unchecked, I finally decided to do something about it and have ended up with this outcome.

I’m currently quite fit and play basketball once a week, cycle half an hour three times a week, and can walk for an hour or more without issue. Of course I can feel my laboured breathing, but can power through. My FEV1 is in the mid 40s, and I regularly blow 400 on my peak flow meter at home.

My main concern is that with a very severe emphysema diagnosis, my quality of life will start deteriorating soon. I don’t feel like I’m on the brink of going downhill, but have been really stressed and anxious since I found out.

Any insight and advice from the group is hugely appreciated.

[Llgr]

You are very young to be diagnosed with severe emphysema. Have you been tested for Alpha 1? Also, no smoking, exercise, a good diet and proper medication can greatly improve your quality of life. It sounds like you have the exercise part down pat and if you see to the rest you should be fine for many more years.

[Joeco in reply to Llgr]

Thanks Llgr. Alpha1 is the next test. It would explain a lot, but I’m also super worried about that as it would suggest I’m unable to slow progression.

[Alfiebax2]

You sound very fit and although COPD is a progressive disease as long as you keep fit ,eat well and keep away from coughs ,colds etc you should be ok for many years to come ..I've had it for 15 years and it's only this last year I've struggled ,so I'm having an operation on September 10 th ...and I'm a fit 70 year old .

Love Babs ❤️

[Joeco in reply to Alfiebax2]

Thanks Babs

[Hacienda]

I agree with Babs, You seem to be very Fit. I used to be very Fit , In my younger Days,( Bungie Jumps, Water Skiing, Squash, etc). I'm Severe COPD, So much so that I have been on the Transplant List for over 2 Years. I still do what I can, ie : Exercise, Gym, Rehab, Can walk about 2 minutes before stopping for a Breather, then continue, When I'm very Bad I have my Scooter...Good Luck to you and keep as well as you can. Love Carolina XXX

[Joeco in reply to Hacienda]

Thanks Carolina

[O2Trees]

Hi Joeco, with an fev1 of 40% you are bang in the middle of the severe range which is 50%-30%. You are not classed as very severe, which is below 30%. So unless there's something else you haven't said which is affecting your diagnosis, you are at stage 3, not stage 4.

At least your GP/consultant is on the ball testing you for alpha-1.

All good advice above - keeping the exercise going and staying away from infections is most important. Good luck and let us know how you are doing.

[Joeco in reply to O2Trees]

Hi 02trees. I guess I’m on not in the very severe range of COPD, thanks to my FEV1, but have been advised of very severe emphysema post CT scan. Thanks for the advice

[Joeco]

Agreed! But it’s hard because I’m still getting my head around this. Thanks for your reply

[Alfiebax2]

I hasten to add Joeco that when I was diagnosed 15 years ago ( I probably had it for at least another 5 years before diagnosis) I was severe from the start but I managed it and stayed fit ( gym 3x week ) until the last 18 months hence me having the op .Stay fit and don't worry . XX love Babs x

[Kristicats]

Hi joeco once diagnosed it is unfortunately always on your mind. It sounds like you are doing the right things to keep it at bay. The main thing is as most people will say here is keep up the exercise, stay away from cigs, fires and people with colds and take your prescribed meds ie inhalers as directed. Good luck. Keep in touch. Lots of good information on here.

[Hidden]

I can relate with the social smoking uhhh! Stay strong, stay fit, do not smoke anymore. You are doing all the right things for yourself. Stay grounded and do some self healing. Get your support system around you.