DISAPPOINTED!!

[blue1]

Went for my annual copd check today, told my lung capacity had dropped from 56% to 48% so I am now in the 'severe' range which is upsetting.

Is there anyone out there living a full life on under 50% capacity.

[sassy59]

Lots of members live a very full life on less than 50% lung capacity blue including my husband.

Wishing you well. Xxxxx

[BrianTaylor]

Depends what you mean by a ‘full’ life. I’m in the severe range. I have a new ‘normal’ but I manage to balance my good days with my bad days, I think? 😊

[Hacienda]

I was 26%, think I am lower now, I do exercise and I hope after my New Valves come along, My FEV1 will increase. I am living a good Life though a bit more in the Slow lane. XXX

[blue1 in reply to Hacienda]

Many thanks for your response, I am feeling much better about this now I can see others still live a 'normal' life even though it may be a little slower.

[O2Trees]

Absolutely and I intend to continue doing so blue1. Never give up believing you can live well. Some adjustments have to be made of course but tbh for myself, I've forgotten which they are! Im happy with my life and hope you will be when you've recovered from this upset (and believe me I do understand just how upsetting this kind of news is).

Good luck.

[2greys]

Very much so. FEV1 31%. I still lead a full life, work full-time. End of May will be sailing a 10 ton cruising yacht for a week's holiday on the Norfolk Broads and rivers. Live up three flights of stairs. Not much that I can't still do even if it takes a little more effort. I will be 69 soon.

[Sparkywoo in reply to 2greys]

Thank you for such an inspirational post x

[Kristicats in reply to 2greys]

Brill x

[claque]

Hi , Fev1 of 22% 2 years ago now rising to 30% with lots of exercise, healthy eating and most importantly a positive attitude Life is frequently difficult but far from impossible . Quite a lot of adjustments need to be made and the support of a wonderful wife helps a lot as well

[Hidden in reply to claque]

claque how do you know your fev as gone up i was told 2 years ago i had fev of 32% do my exercise but not been told what my fev is now could this be cos am on oxgen

[claque in reply to Hidden]

Hi tigers69 I am told my Fev1 most times when I have spirometry tests Usually about twice a year I also am on oxygen 24/7 but I don't think that particularly Fev1

[Hidden in reply to claque]

must be our hosp then that does not gaive it out

[claque in reply to Hidden]

Hi I think if you ask for it they can hardly refuse to let you know We are all entitled to know test results etc.

[O2Trees in reply to Hidden]

But why would you wait to be told tigers69? We need to be proactive. Ask for your results, and ask that they give you a print-out to take home. I have print-out of my lung function test results going back to when I was diagnosed in 2000. They are yours and you are entitled to them.

[Bronchi1]

I have bronchiectasis and asthma. There has been minuscule deterioration over last 3 years . I put this down to exercise, exercise, exercise....and vitamins with good diet. Try not to get hung up on figures, just find things you can do and enjoy them to the max.

Dealing with respiratory disease is so much in the mind....good luck.

[syntax]

And if l could lose weight ie 25 KG, I would be

there with you all ???

[Rosie-m]

Just try to concentrate on keeping yourself as fit and well as possible. The Fev1 is just a rough guide to how your lungs are .If you are not deteriorating - getting more breathless or getting frequent chest infections then your doctor will not be worried and you can still live full life.Have you been offered to go to lung physiotherapy- Its called pulmonary rehabilitation and you will also meet other people with this condition - The physio teach you how to breathe effectively and also exercises to stop losing muscle strength -some people get weak physically because not as active due to breathlessness You GP can refer you.Good luck

[stamford1234]

Oh yes. I have gone from 29% then up to 34% which I believe is border line v severe. I am pretty well okay. I get frustrated and try to keep the anxiety and depression at bay. I haven't had an exacerbation since the New Year so feel proud for that. Every day is different. Pace yourself. Make lists of things you want to do and potter your way through, it can take days but you will get there. I am not that into the Spirometry, I think the best guide is how you feel. Eat well and do a bit of exercise. Anyway Summer is nearly on us, enjoy

[SquirrelsHolt]

Hi blue1 and my FEV is 21% and although on oxygen 24/7 I do manage to drive which gets me out and about. However I nearly always have my carer with me as I do tend to feel more confident when accompanied. Silly really as I used to be so very independent! I find the mental anxiety and panic surrounding my breathlessness is far more of a worry for me. So planning everything in advance makes a huge difference. Get your GP to refer you to a Pulmonary Rehabilitation course as other members have said and they've given you lots of sound advice, which all comes from their own experiences.

[blue1]

As always, thank you all for your wonderful advice. It has given me so much hope and I am now determined to simply get on with life and do the best that I can, I am very grateful to you all and I too have a wonderful husband who gives me lots of reassurance, help and support and I wish you all the very best of health and happiness.

[stamford1234 in reply to blue1]

My husband helps a lot. Sometimes I think I don't deserve it! He had a bout of ill health last year but we got through it together. Put some music on and have a sing song. It is very good for the soul, and the lungs!

[Milo1998]

I not sure how the numbers can affect our lives and I feel a bit skeptical of them. I was diagnosed below FEV1 55% a couple of years ago.The last time I saw the doctor he said I was much better and no longer severe, just from what I told him about how my symtoms had improved. I don't let these numbers get in the way of my life and still ride my E Bike to work twice a week.

[Nevergiveup73]

Sorry to hear this but my dads in same place he ok but says he gwts tired so has to push to stay active xall the best

[Kristicats]

Hi blue1 I started off at 56% 3-4 years ago and at one point dropped to the 40s. You could have had a bit of an infection etc.Fev1 can vary week to week somewhat so don’t be too alarmed. I’m now around 70% ( on inhalers) and am usually well apart from when I get winter infections. I feel that keeping off the cigs ( which I still relapse now and again😠! on holidays mainly!!) and being as mobile as possible really has helped to restore some of my lung capacity. I’m also hoping the pr course is going to give me another kick to improve things more. Now is the time to do all you can to keep your levels at bay or try for improvement ? I do keep a check on my fev1 monthly to keep me on track ( although we are all very different , as someone with eg 50% may not be affected too much yet someone else at the same% may be experiencing things differently ) Good luck . Keep active and I hope you see an improvement . Keep in touch Cx

[Comley1964]

I was 56% 5months later I was 50% .1.1/2 years after that I was 49% .I don't feel any different

[vittorio in reply to Comley1964]

READ MY COMMENTS COMLEY1964 .... ! ... THER'E ONLY NUMBERS !!!...

[JANET127]

Being ADHD all my life with Lots of energy, now 38%. I feel like a record player that played 78 speed songs ,now 45 speed songs...I go to test again in in July ..hope I don't feel like a 33 rd speed song! Life is what you make it! No I can't go my normal speed, but I can still do what I want to do only slower....s-l-o-w-e-r- lol...JANET127

[Psalms91]

I'm so sorry to hear this. I go to the doctor today to get the results of my LFT. I am worried. Sorry I could not answer your question.

[stamford1234 in reply to Psalms91]

I hope it goes well for you

[vittorio]

YES BLUE1 = ME !! ... I'VE SAID IT BEFORE , AND WILL SAY IT AGAIN ! - THESE ARE ONLY NUMBERS !! ... IN THEMSELVES MEAN NOTHING ... IF I TOOK NOTICE OF THESE COOKED UP NUMBERS , I SHOULD HAVE BEEN DEAD YEARS AGO !!! - ALWAYS REMEMBER - ITS HOW YOU FEEL THATS IMPORTANT ! , NOTHING ELSE , ...SAME AS THESE DAM EXPRESSIONS LIKE = " THE LAST STAGE " ETC ....A PAL OF MINE WAS SUPPOSED TO BE IN HIS " LAST STAGE " OF CANCER ...............=.................THAT WAS ELEVEN YEARS AGO !!!- AND HE'S GOT MORE ENERGY THAN I HAVE !! , AND HE SAID TO ME WITH A SMILE ...= ..." WITH THIS " LAST STAGE " BUSINESS - WHEN AM I SUPPOSED TO DIE THEN ? " !! .... - SO LET THE DOCS AND NURSES PLAY WITH THEIR FIGURES - AND TECHNICAL WORDS - THEY GET PAID FOR IT ! ITS YOU WHO HAVE TO DO THE LIVING BIT !! ... ...- YOUR BODY WILL TELL YOU ALL YOU NEED TO KNOW .....SO LIVE IT = GOOD LUCK !...

[poppy08]

Hi Blue . I have an FEV of 23% which has been steadily dropping for the last 2years. I am on oxygen permanently but I still manage to have a life albeit a tad challenging at times. I get very breathless and need to stop and recover. Then I just carry on. Don't let it beat you. Sometimes I get scared but I just deal with it. Best wishes. Kevin