I was diagnosed with COPD last year with an FEV of 50%, went to clinic last month and lung capacity down to 41%, can anyone explain?

Hello and welcome,

I help to look after my dad who has various lung diseases and the best advice I can give you is to get all the facts on your condition, know what helps and what hinders learn to manage it not letting the disease manage you. Easier said than done I know but it will come in time.

Speak to your GP about taking part in a Pulmonary Rehabilitation Course. They teach you all you need to know, help you learn how to exercise safely and assist you with anything you need. Within a week of first going, my dad had a disabled badge for the car and oxygen at home. My dad loved it and is now doing the follow up course.

One step at a time....................

you always seem to know the right thing to say tanyamarie. well done x

Hi Carroll,

I would second what tanyamarie has said. You have taken the first important step by stopping smoking. The next step is to take control of your condition and the best way to do this is to get refered to Pulmonary Rehabilitation. You will find the education coupled with the exercises will give you a better understanding of how you can best manage your condition & improve your quality of life. & yiur exercise tolerance, It is ok to be short of breath

It is important to continue with the exercises after the course is over.

I have severe COPD 28% lung capacity & on oxygen 24/7, but I still exercise most days for about 30 -60 mins "do a bit, rest a bit, do a bit more "

You say your job is stressfull, this will not help your condition. Is there any way you can reduse tthe stress level?

The BLF do a free dvd called " Living well with COPD" please go to there website where you will find lots of useful information & can order the free dvd

Best wishes

Jo

Hello take one day at a time, each one is different some days good some not so good Val

Hello Carroll.

work out your own triggers too....like humid warm weather ... yuk. My triggers for breathlessness include talcum powder, any can sprays, strong smells of cleaning products, dust, etc etc. so look at how you can arrange your life to be as dust free as poss, including things like non-allergenic pillow cases.

Can you work from home sometimes - eg in the weather that's worse for you. have you spoken to your employer (plan carefully) to see how they can help you ...legally they have a duty of care.

Have you got a blue badge for diabled parking ?

Keep learning ... it really helps. This site is full of info. Look on Utube for videos on pulmonary rehab and exercises for COPD that help build you up and also breathe better and also build chest muscles to help breathing.

Hope that helps.

At 52, you are comparatively young to have Emphysema. I believe you should ask your Dr for an Alpha 1 Antitrypsin Deficiency Test. It might explain why you have deterioriated since stopping smoking. The more information you have, especially Pulmonary Rehab, the better you are able to cope. Try to get the stress level at work removed, you really don't need it. If your A1AD test is positive, there is a research centre at the Queen Elizabeth Hospital in Birmingham that you should contact, they are called ADAPT.

FEV1 is the measurement of the amount of air you can blow out in a second. Lung capacity is how much air you have in your lungs. Both are important measurements but the figures themselves don't reveal how it might affect you. Everyone is affected differently by breathlesness and the most important thing is how quickly you recover when breathless. Pulmonary Rehab can improve all of these things and can't be recommended highly enough, it's a must for people like us.

Alpha1 Antitrypsin Deficiency, or Alpha-1, is an inherited, genetic condition that is passed on from generation to generation. As the name suggests it is a deficiency of alpha 1antitrypsin (AAT) in the bloodstream. AAT is an enzyme (sometimes called a protein) produced in the liver to help protect the tissues of the body during infections. Therefore each time you get a chest infection your lungs are much more risk of tissue damage than in a normal person. A simple blood test at your local hospital will confirm it.

Note this is a very rare condition but anyone diagnosed before or around the age of 50 should get checked out. I was diagnosed at 38 and have severe AiAD

Please don't worry too much about the FEV1 score. Your breathing is affected by so many different things and the score can vary quite a lot. Mine is normally around 23 but has been as low as 17 and as high as 29. Stay positive, exercise and you may see it rise back up. Do as much as you can to reduce your stress levels as this can have an adverse effect on your breathing. And congratulations on stopping smoking.

Thanks for all your responses, I hope you have all had a good day, I have had some good news, heard about pulmonary rehab appointments for later this month, being assessed this coming Monday, physio coming round to see me at home so will have to leave work early!

That's really good news Carroll. You will gain a lot from the course.

Best wishes

Jo

Hi, i was just wondering if 52 is really that young to have been diagnosed with COPD.

I was diagnosed aged 37 with Moderate COPD, and i am only 42 now. The Alpha-1 test came back negative.

Kind regards

Kate

Me too diagnosed at 42, but have probably had it since 40 years old. Its young but not that unusual.