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?

[Carroll]

This is the first time I have written on this site. I am a 52 year old female, diagnosed with moderate COPD (FEV 50%) I gave up smoking a couple of weeks after being diagnosed and am proud to say am sticking with it. I dont fully understand the difference between FEV and lung capacity, the nurse has changed my medication last month and I now take Ventolin, Symbercort 400 and Spiriva. Mornings seem to be my worst time, i get tireder as the day goes on by 4pm I am ready for my bed! I still work full time although I must admit it is getting harder and harder as the weeks go by. ( I dont have a physical job but my job is stressful) I get very breathless and can only walk short distances before I have to stop. I am still trying to get my head around this disease and would really appreciate any help or advice and to talk to people in similar situations. Thanks in advance for any advice, C

[tanyamarie]

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....................

[amagran]

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

[jojam]

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

[valm]

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

[Hidden]

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.

[Hidden]

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.

[Hidden]

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.

[Hidden]

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

[Carroll]

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!

[jojam in reply to Carroll]

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

Best wishes

Jo

[kate13]

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

[Juliee60 in reply to kate13]

That is so young love . I know some one of 28 . Don't understand it have you stayed at the stage you were diagnosed with?

[kate13 in reply to Juliee60]

Hi,

I stayed at the moderate stage until December 2016. However I am now at the severe stage, but it's only altered slightly. I am only just about into this category. I have had loads of chest infections and have taken lots of antibiotics which simply no longer help me. Only a few seem effective now.

Have recently had my inhalers changed now using Fostair, Salbutamol and Spiriva. Also take Azithromycin 500mcg in the Cold and damp winter months. Two every Monday, Wednesday &Friday. I used to take one capsule everyday. Unfortunately as my condition progressed the daily dosage no longer helped me. Still see a consultant every year. I am have just turned 48 now. I work part time and try really hard to maintain a positive outlook.

It really is a struggle sometimes, however negativity really doesn't help me at all. I really hope this helps you!

[Leighonsea]

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