Who on here has emphysema : Reaching... - British Lung Foun...

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Who on here has emphysema

Reaching out to those who have emphysema

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Yes, I do. I have a fev1 at 43% and just get on with living my life to the fullest everyday x

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I wish I knew how to x

Just concentrate on what you can do, rather than what you can not. Accept what you cannot change and live as healthy and active life as you can x

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Was you diagnosed at this stage or have you progressed

Diagnosed last year at this stage, and at the the time would get breathless walking 200 yards. Stopped smoking straight away, did a pul rehab course and can now walk 5 miles, ice skate for 4 hours every week and lead what I call a normal life. If you do all the right things you should feel better but you do need to push yourself and take charge of the situation x

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Did you have a scan. I didn't

No

So how do they know what stage sorry for being nosy

Because of the spirometry Lung test, had two now and the are roughly the same. Test states fev1 43% severe. I have copies of the test. Waiting to see a consultant at the hospital In august.

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Oh sorry for all question just looking for some understanding I guess

I have stage 4 emphysemia hun what stage are u at fev1 23% whatever that means

Think moderate fev1 79 so moderate on diagnosis. When was you diagnosed

15 yrs ago I was diagnostic

What stsge was you diagnosed

Diagnosed I meant to write

I know what you meant. Was you diagnosed as mild then progress through the stages

Me too StillManage but chest infections are the pitts

You are streasing over 1%?.....mild 80%..moderate 50 to 80%. Severe 50 to 30 and very severe below 30%....please stop worrying over 1%, your doctor has told you mild so try to accept you can change your lifestyle to improve your exercise capabilities and increase your lung capacity. You have had a wake up call so the rest is up to you

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What do you mean wake up call

For me it was a wake up call to quit the cigs and do more excerise. I took action and improved what I can do instead of feeling sorry for myself x

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Oh ok

I think 80 or above is mild so you are upper end moderate. If I'm wrong someone can post and let us know.

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Thank you

But consultant said mild

Think it's because on spirometry test you might vary. On another day you would maybe be 80, mild diagnosis. The main point is you are diagnosed at the less severe stage of the illness. If you follow advice on here and from Dr you should hopefully do ok.

Hi Victoria, I too have Emphysema, diagnosed last November while hospitalised with Pneumonia.

This forum is a great place to learn more about the disease both with current posts & the archives - I spend hours in the evenings going through past topics & I feel much better being a bit more educated.

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Hi see from.your ppst you had cat scan I never had one. I have stop all excercise as feel helpless..told mild but feel rubbish how do you feel.

I had 2 CT scans, one in hospital & another 3 months later to check on some suspicious nodules & lesions - thankfully the second was all clear.

I'm mild too & cope ok except with stairs or hills, even slight & I'm on my knees.

What led to your diagnosis Victoria, how long ago & who made it?

Hospital admission lung function test the one where you go in a booth and breath in carbon monoxide. Consultant told me 2 months from admission

I don't feel mild get heavy breathing. Stairs hills so scared of getting worse

Initially it is scary, there's a lot to accept & come to terms with but it does get better. The thing is the longer you avoid exercise the harder it will be when you have to do anything & without stamina you feel so much weaker & breathing will feel much more difficult. Have you tried deep breathing exercises while you walk or do chores or even in the bath or in the chair? They're really helpful & have a calming effect.

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You fev1 tells different story to cat scan bit worrying as I would really like to know if if I am actual mild/moderate

No, spiro & the CT results don’t tally - I believe the moderate aspect accounts for the S.O.B. with stairs & inclines. Whatever it is I’m learning not to rely to heavily on the numbers but on how I feel & what I can do. The consultant asks that I aim for 2 miles of activity each day ( approx 6,000) steps which is just about manageable on most days.

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A lot to process see I feel like I am moderate as hills give me heavy breathing so do steps.

I would recommend you do more exercise, say over a 6 week period and see how your breathing improves along with your stamina before you get more concerned, you have said you have stopped exercising which is the worse thing yoh can do for your lungs, it only takes 2 weeks for your fitness to decline x

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Using deep breathing techniques would help with both hill work & general walking. Have you looked at the BLF website? All kinds of good info there including how to use breathing to better performance.

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I have very useful

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What does i w mean

All This sounds familiar from a Recent "Hidden" 1 or 2 of them. ?

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Sorry what's recent hidden mean

Please????

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Yes Hacienda I agree....I won't be responding to anymore of these posts!!!!

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Me too. Don’t like this.

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Hidden again!🤬

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Yep.. I just saw that...obviously a spoof??

You hit it on the nail Hacienda.

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I have read posts that sound so very similar to this Hacienda . The wording may change ever do slightly but the nuance is the same. 😊 Hope you are doing okay my friend. xx 😘

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There is a nightclub in Manchester called Hidden,it's whereabouts are a mystery?

hidden.club/

Ski's and Scruff's investigators extraordinaire x

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Thanks for bringing a laugh to a very tense situation. 😉

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I felt compelled to look at that link and the photos in the gallery . That’s a lot of people in a little space. Do you and Scruffy go clubbing there frequently? 😁

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Ha Ha if i could get to Manchester i wouldn't be on here i would be too busy raving or whatever they do these days,my pub,club,social venue for the last 7 yrs has been a la casa in the front room.:) x

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Y yo tambien, my idea of partying is hanging with my sheep, not in my front room obviously but in theirs. It will be shearing time soon, something I find much more stressful than my sheep do. And I don’t even do anything. They go off in a sheepy campervan for their spa treatment, pedicure and haircut then get a chauffeur driven return trip after. Which I don’t suppose you wanted to know and I don’t even know how we got onto that subject. 🤔

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I am not a recluse by choice but more by circumstances.when you care for somebody 24/7 and then develop your own medical conditions your circle of friends disappear or maybe become Hidden if you will excuse the pun.So it's me and Scruff's but hey that's life and my violin stays in the case oh and btw may i borrow a few of your sheep.i must hastily add for a platonic companionship.and a few bundles of hay would be useful. :) x

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😂😅

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doesn't it!

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Sounds familiar to me too.

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Reported

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Me too. Not acceptable in my book. Not at all.

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Hi Skatergirl1 . 👋 Most people want to have honest discussions or be supported through a difficult situation. And rightly, we do our best to support each other. And then unfortunately, there are those whose intentions are unknown. There is nothing in this post that violates forum rules, so I don't see any action that could be taken, but your frustration is understandable. You've been really good with your responses to this post. 😁 I think this place is full of experience and support and we all give what we can. There are so many words of comfort and many wonderful answers to difficult questions. We all appreciate it so much. Honestly however, there are times in my life, when I feel like silence can also be a very good answer. 😌

I hope you are still enjoying your skating. We are in the midst of the rainy season ☔ but we have beautiful sunshine 🌞today. Take good care.

Cas xx 🌳🌲🌿

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Not acceptable to waste members’ time who genuinely want to help.

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I wont be replying any more.

Sadly, your loss.

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If you are genuine Hidden person then i would suggest counselling at the very least for Anxiety or if you are not genuine i would suggest wasting somebody else's time.

Puzzled Ski's and a cat that sees in the dark.

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Are you for real? If you have lung problems your doctors would have told you exactly what and why.

If you have MH problems then you are most definitely on the wrong site. There's a lot of people here who have real problems with their health and don't need a spoof milking sympathy.

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Spot on.

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Seems like there are a few people who think it's funny to milk sympathy from those who really have health problems.

SICKO'S.

God help them if they ever have a health problem.

How are you doing lately?

X

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I know it’s late, but I wrote a reply, then went to look at your profile and guess what, it’s gone.🤣😂😂😂😂

Just to say you are so right Boudica.

We all know what happened when Peter called WOLF once too often.😝

I’m doing OK last time I checked🤣🤣

How about you? Good I hope

Sleep well.

Good wishes

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Hi won't grumble but the old bod likes to act up and throw a curve ball at times.

X.

I was diagnosed at 27 years old with paraseptal emphysema which effects the top half of both lobes in the lungs, got diagnosed when my lungs collapsed and I only smoked for 13 years my FEV1 71% Since then every other complication wants a piece of my lungs. But when I come to the blf I realise how lucky I am as there are some really poorly people out here and continue to inspire me every time I read.

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I’ve read these ‘hidden’ posts and the profile and it does seem very similar to a person who’s posted before. I’m not a doctor but it comes across that there is extreme levels of anxiety here, if this is genuine!

I’m currently signed off work with anxiety (totally work stress related, not copd) so I know a bit about anxiety. I was diagnosed 3 years ago with mild copd but only acknowledged it in Oct 18 when I gave up smoking. I came on this site asking for advice (in a panic, like many newly diagnosed) I very quickly realised how lucky I was to have been diagnosed so early and how grateful I was for all the invaluable advice. I know rarely post on here but like to read how everyone is getting on. One of the reasons I don’t post excessively is because in the scheme of things I know that I’m lucky, that I’ve had a wake up call and wouldn’t want to waste these lovely guys time 😍 but I know they’re here if I had a concern.

What comes across to me as that your concerns cannot be met, assured, addressed, dealt with by the good folks here. I really think you need to speak to your doctor about seeking further help through counselling or other forms of anxiety management strategies.

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