Time seems to fly.: I don't spend a... - Lung Conditions C...

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Time seems to fly.

11 years ago•26 Replies

I don't spend a lot of time worrying doctors and nurses about my health these days, I'm used to it now but recently I am becoming more aware of it.

There was a time I could help around the kitchen, make a cup of tea for example, or just lay the table, now even that is beyond me.

Just getting up in the morning and walking the few feet or so into our bungalow sitting room leaves me so out of breath that I have to spend several minutes at rest before I can start my meds.. . . . . and that is with 24hr. oxygen.

Are any of you aware of your decline in health in the same way or are you like me just accepting the fact that it is the nature of the beast and we constantly have to adapt ourselves to doing less and less as the weeks fly by, and fly by they do fly, I have never known time pass so quickly as they do now in these twilight years.

Allan.

Written by

eightyplus

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26 Replies

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newlands11 years ago

Hi Allan ,yes like you i am struggling now and only 72 i manage to make a cup of tea and toast for breakfast after i have been to the bathroom . All my meals are ready meals these days but lucky enough too afford marks and spencers lovely food . every time i have a bath i think its my last ,but hay ho i wake up each day take care Allan

love Dorothy

Toci11 years ago

I thought I must have written your post! xx

eightyplus11 years ago

Hi Toci!

I guess it applies to quite a few of us but the awareness of our condition is like the last reel in a film going at triple speed.

Toci• in reply toeightyplus11 years ago

Agreed, it's life on fast forward and it goes so quickly. x

phillips111 years ago

Hi Allan. I always feel a bit of a fraud. My FEV1 is 29% which classes me as very severe on the Gold standard, but I get about ok and manage quite well. Oxygen is only used if I am actually doing something and not when I am sitting around. So all in all I am fairly happy chappy. I am at 71, of course, much younger than Dorothy. he he

Bobby

newlands• in reply tophillips111 years ago

Naughty step again Bobby , how come you can have oxygen just for moving around i was told they don't do that anymore ,bet you flirted with the nurse

Dorothy xx

phillips1• in reply tonewlands11 years ago

Just my natural boyish charm Dorothy. lol

Bobby xxx

Toci• in reply tonewlands11 years ago

Don't know where your nurse gets her info newlands, or if it is just in your area, but I know a lot of people who only use oxygen at times when they are exerting themselves.

Puffthemagicdragon11 years ago

I'm like phillips1 but at 63 I'm only a youngster ! The only difference is my FEV is slightly lower at 24%.

newlands• in reply toPuffthemagicdragon11 years ago

Hi Puff mine was 23% then went up to 26 % then told last month was told they don't do spirometer anymore !!!

Toci• in reply tonewlands11 years ago

No spirometer? Then how do they monitor you?

newlands• in reply toToci11 years ago

Hi Toci been told it depends on how many infections you have !!

Toci• in reply tonewlands11 years ago

Well, I don't know what to say! My GPs are absolutely useless but I do have my spirometry checked every six months at the hospital, and I VERY rarely get infections. I know the NICE guidelines for COPD recommend spirometry at least annually for people on oxygen. I am at a loss to see how you are monitored without it. Is it a cost-cutting thing? Strange world. I would check with the BLF. x

Puffthemagicdragon• in reply tonewlands11 years ago

I bought my own.

The same as they have at my GP's.

jackdup• in reply toPuffthemagicdragon11 years ago

Wow, what did that cost and where do you get them?

Puffthemagicdragon• in reply tojackdup11 years ago

I got it from Amazon. It costs £94.80. I'll be honest though. I got my " children " ( They are between 18 and 25 ) to buy me one for my birthday between them.

amazon.co.uk/Vitalogrpah-co...

There is a cheaper version for £58 but you can't put in your height, sex and age.

amazon.co.uk/Piko-6-Digital...

jackdup• in reply toPuffthemagicdragon11 years ago

Do you find it works pretty well and is pretty accurate? I have a cheaper one that only meaures FEV1 and PEF but if I start my blow without maximum force my FEV1 is always higher which seems somewhat backwards. It seems some of the models show the quality of the effort as well which would certainly be a benefit.

Puffthemagicdragon• in reply tojackdup11 years ago

It's the same model as they use at my docs. I have tried it at my oxygen appointment and it's quite accurate.

I'm a bit confuse about showing " the quality of the effort " , If you could help with that I'd appreciate it.

The one i got also shows lung age, not that it matters!

jackdup• in reply toPuffthemagicdragon11 years ago

Apparently if you don't give an all out effort your FEV1 will be higher that what it actually is, which doesn't seem to make a lot of sense. The one PFT I had I blew an FEV1 of 2.8 when normal for someone my age and height would be 3.6 and with my COPD it is usually in the 2.3-2.4 range. The technician said she would not count it as it was an inadequate effort which didn't make sense, but from doing a lot of reading it seems that if you don't give an all out effort you can get a higher FEV1 than actual. I believe part of the problem with COPD is the small airways are either blocked or collapse when trying to expel fairly hard so the less hard you blow the more air moves out and the higher the FEV1. I played around with the one I have and found that if I didn't blow as hard as I could from the start I would get a higher FEV1 reading than if I blew as hard as I could from the start but my PEF would be lower. If I blew as hard as I could from the start I would get a higher PEF but a lower FEV1.

So if a person gives an inadequate effort you may get a higher reading than you otherwise would so if the meter determines you did not have an adequate effort than a person should not count that reading.

I know some of the meters on that page measured effort as well but have no idea how it determines whether or not you made an adequate effort.

Someone here may have more knowledge on this subject than what I do as I am certainly not an expert and probably not even all that informed compared to some people here.

Puffthemagicdragon• in reply tojackdup11 years ago

That's interesting. Thank you. When first diagnosed 3 years ago my FEV! was 24%. It is now about 23%. Some days it will go down to 18%. I bought one because they only take my reading once a year at my GP's and if I happen to be slightly under the weather that day then the reading wouldn't be a true indication.

jackdup• in reply toPuffthemagicdragon11 years ago

I would have liked to get one like you have instead of the one I have but really couldn't find anything else at the time other than a professional one for around $1,000.

I have noticed a significant variance throughout the day and from day to day with my FEV1. I have been as high as I think 67% and as low as the low 50s,

Puffthemagicdragon• in reply tojackdup11 years ago

I wish mine would go that high !

jackdup• in reply toPuffthemagicdragon11 years ago

The only advantage we have is the medical breakthroughs they are making there may be hope for a cure.

Also they are now claiming that with 3D printing they will be able to print new lungs and will use your DNA so there won't be rejection issues like there is with a transplant from a donated lung. This isn't going to happen next month but the claims are that it will probably be sonner than many think, so there does appear to be some hope on the horizon.

Puffthemagicdragon• in reply tojackdup11 years ago

Yes jackdup ( Love the name ! ). I do try to keep up with it all. The 3D on looks interesting. It was used to make a lung splint to save a youngsters life.

mashable.com/2013/09/05/3d-...

jackdup• in reply toPuffthemagicdragon11 years ago

Technology is sure advancing and the breakthroughs are amazing. Thanks for that link, very interesting.

suemaz11 years ago

I am 59 years old and have damaged lungs through a bird allergy. This time last year I was still attending the gym, walking with a walking group, and working in a busy school nursery as a nursery nurse, I live alone in my own house, and now need a stair lift fitting, can't open my garage doors to get my car out without getting in a state of collapse, I cant even water my garden, hang out washing and so on and so on. I lay in bed till about 10am to pluck up the courage to make a move and fight another day! I have accepted my fate, as most of the medication tried has either not had any effect or it has caused liver probs. My social life has ceased, if I am taken out in the day I am wrecked after a couple of hours and can't wait to get home. I have never sat for so long ever! I may get a lung transplant, but not banking on it. Keep your spirits up and fingers crossed for a lovely summer!! at least we can get a sun tan, and look healthy that way!!