I have severe COPD with a FEV1 of 18% can any member with this about this level tell me how they are coping please.

[Mikefever]

[newlands]

Hello my fev1 is 20 have lots of health problems age 72 live alone ,and yes i do struggle but lots of us on this site do. I have just had 6 weeks of physio at home and it has helped i have ready made meals and meals my daughter brings me i have a stair lift bath lift, wheelchair for outdoors my biggest struggle is the bath every time i have one i think its my last The area i live in dont believe in ambulatory oxygen i have never had a 6 minute walk test ,yet my sats can drop to o the 70s when i am doing things ,i have a care phone big help when your alone ,i dread the phone ringing when i am doing any thing dont want people to hear how bad i am . hope i havent gone on to much ,i still enjoy life and taking part on here

Do take care Dorothyxx

[Mikefever in reply to newlands]

Very helpful, I know its hard for us, but we must soldier on.

[newlands in reply to Mikefever]

Tell us how you cope mw77 it will be nice too know

[newlands in reply to Mikefever]

Tell us how you cope mw77 it will be nice too know

[Hidden in reply to newlands]

Just wanted to say hello to you Dorothy. I also live on my own, haven't got a family as such so at some point guess I'll have to have meals brought in. I'm only 59 at moment - do still struggle in many ways but glad to do whatever I'm able.

Bless you, my heart went out to you on not wanting anyone to hear how you might struggle to breathe when answering the phone. That's me as well, depending on the severity...doh!

Anyway mw77, sorry if it seems I'm ignoring your post...you've asked a good question and I know we'll all have found the best way round things.

Though still quite young I moved to sheltered housing last year...more for the location than anything. It's right next to shops, library, bus stop etc. And it's ok cos you can stay as independent as you want. Also purchased a mobility scooter after moving here. Walking was a struggle as I'd fractured my spine to add to the copd so it's truly a godsend. I can go that bit further now, plus get a fair amount of shopping (with the help of the lovely staff at my local store!)

It's hard and I think pretty isolating to have this condition - for obvious reasons, as with any life-limiting illness. The fact that breathing can be such an effort is knackering and limits conversation, even though some company or a phone call is so welcome.

You didn't say whether you've got support from your local surgery and/or hospital respiratory team - if not go for it.

I hope you'll find all the support that's available to you and wish you all the best...Lovelight

[newlands in reply to Hidden]

Hi lovelight thanks for your reply ,i guess if we live on our own we have too manage , suppose i am lucky that i can buy marks food only because i get the full dla as it was.

I set fire to my kitchen a year ago another reason for having ready made meals

You take care

Dorothy xxx

[Mikefever in reply to Hidden]

Thanks lovelight

[scrobbitty]

I am about the same as you (19% when last tested in September last year) and I rub along okay. I still drive which is a bonus, I'm not on oxygen as my SATS are pretty good both sitting and moving around. I do struggle with a few things but either ask someone else to do them or try myself where possible. The most difficult thing for me is getting lids off jars or untwisting wine caps but with perseverance I get there! Still life in the young dog yet though xx

[Mikefever in reply to scrobbitty]

Thanks for replying, lets fight the fight.

[scrobbitty in reply to Mikefever]

There are days when COPD has me but for the rest of the 363 days, I merely have COPD LOL. That's how I deal with it albeit at snail's pace xx

[Puffthemagicdragon in reply to scrobbitty]

Tap the edge of the jar lid with a knife to make a small dent. This releases the vacuum and makes it quite easy to take off. The dent doesn't stop the lid being used.

[scrobbitty in reply to Puffthemagicdragon]

You little star, Puff, cheers, will give that a go next time xx

[Puffthemagicdragon in reply to scrobbitty]

[newlands]

Me again tell us mw77 how tou cope

Dorothy

[jeanlock in reply to newlands]

hi all

[newlands]

Sorry about all the posts dont know what i did senior moment!!

[Mikefever in reply to newlands]

Sorry I did not answer I am afraid I was busy, talk to you soon.

[angse]

Hi I was just diagnosed with COPD last week, so don't really know to much about it , I started going to my doctor about 18 months. Ago with breathing problems and severe cough I gave up smoking 10 years ago he tested me for asthma not that so had spriomartry tests showed some lung damage so was put on inhaler, breathing got so bad I used to cry at the thought of going out, got chest infection, never had before, was sent for chestxray that was normal, had heart scans that was normal, still going back to doctor coughing breathing got much worse, he then diagnosed lung infection, antibiotics for 6 weeks, felt a lot better, then breathing bad again, off I went back to doctors who was a locum he said he thought it was cold and decided to put me on a powder inhaler with a steroid in it for 3 months, I have been back had another test which confirmed copd it took them so long to diagnose, should I be under a consultant is there other treatments that can help, they never discussed anything with me would be glad of any advice thanks. Angse

[coastal1 in reply to angse]

Welcome to the site angse.

With a first post you will probably be best to start a new thread under ...write a post above right. This way more people will see it and you will probably get more answers.

I have only been a a member for 6 months but have found a wealth of information. I don't post very much as I am not very good with computers. 1 finger typing takes ages.

Now that you have been diagnosed lets hope you can get some effective treatment. Im just under treatment with my Gp but a lot of people seem to see a consultant. The long acting /preventer inhalers can sometimes take a few weeks to have an effect. Was diagnosed last November.

Since quitting smoking and starting the inhalers I have been more or less symptom free. I try to keep fairly fit and active . I seem to be able to do most things that you would expect for my age. I enjoy walking , gardening , moderate exercise classes. I am 63 and female.

Cheers Coastal

[Puffthemagicdragon]

I'm very severe emphysema with no other particular ailments. I had angina 3 years ago but have no problem since. Recent heart tests show heart is normal. My FEV1is about 22 to 24%. I still drive. I still work at the part time job I was doing before being diagnosed three years ago. I'm on a very low 1/2 litre per minute oxygen. I don't always need it. I do most things but just take longer and sometimes plan things if it's going to be a longish job, like an oil change on the car or something.

In my opinion the key is to keep active !

[Snook]

I have emphysema and FEV1 18%, to be honest I struggle with my breathing. I have supplementary oxygen 1½ ltrs 16 hrs a day and also have ambulatory oxygen all of which help but my condition varies from day to day some good some bad.

[Batbara]

PUFF,

you are spot on. Exercise, and move. Even if you have to push yourself. Your lungs will thank you in the long run,

[Dmactds]

I just had an appointment with my Lung Doc friday and mine's risen from 25% 18 mos. ago to 28% now. The doc told me, in so many words, that I was doing things ass backwards since I only use my oxygen when sitting around at night, don't sleep with my concentrator going and refrain from using my strap on tank when I'm up moving around for the most part.

(...an addendum: I'm always conscious of what and how much I eat and at the age of 71, it certainly doesn't take as much or the same kind of food. I'm also practicing 'Pursed Lip Breathing' and am concentrating on re-toning my mid-section muscles now that my legs and arms are more or less back in shape. After my discharge from my pulmonary collapse, I was down to 165 and didn't have a muscle left in my body worth a damn after being out cold for a week. "Perseverance Furthers" !!!...)

With the exception of using the night time concentrator, I'll change all of that so I'm doing it more the right way; but, still, doing it wrong and paying attention to my weight (I've regained 15 lbs from when I was discharged 2 years ago), exercising by walking and doing yardwork without my mobile tank I've managed to improve 2 percentage points. I have another appointment in 6 mos. and we'll see where we're at then.

Aside from that, I've tried to post here on my own and not as a 'Reply' and nothing shows up anywhere. Have they changed something about that as well?