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British Lung Foundation
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question about inhaler

I got told i have emphysema 2 years ago and had 3 lung function test and each time it got better after i stopped smoking i think mine is classed as mild. Any way to day i had a phone call asking why i had booked a flu jab appointment and i said well it's on my records why i have one or have lost them ? after a while i lost my temper and put the phone down.

So after that was talking to my wife who had to see the nurse today who does my lung function test and i said ask what's gone wrong, so she did and the nurse said because i don't use my ventolin inhaler i have been removed ? she i remember talking to your husband and he said he does not want to take it 😡 but i never all i said was i will use it if i need it and get out of breath plus she only give it me because i said when i walk up this huge hill my breathing changes and does for everyone who walks up the same hill and she said just try it that's all. But now she tells my wife i am meant to use it all the time and because i don't my lungs will progressively get worse faster ? is this true that everyone with emphysema are meant to use them and if so why did they not give me one two years ago i don't understand. Even my first lung function test they never give one to use in-between the test to like there meant to.

18 Replies
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Incredible Andy same with me only when I went to my Pulmonology he said the opposite and said it was wonderful that I hadn’t any need for the inhaler. I know you are in UK and you use nurses but the more I read many of these posts the more I see the differences in treatment

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Rubbish where i live

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Oh and Andy good for you on your improved tests . It really proves that quitting smoking all together really pays off

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Yes it does prove it

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Hi

A strange one considering emphysema is caused by smoking, inhalation of smoke or toxic fumes ( occupation or air pollution) not discounting alpha 1 deficiency.

And the inhalers are only for the effects, ( breathlessness)

I fail to understand how not using a particular inhaler will make the condition worse.

If you have stopped smoking, and where ever possible avoid any pollution.

Why would you use any medication if you are not effected.

You only use a inhaler during Spirometer test if they suspect asthma.

I would ask for a second Spirometer test with reversibility test included to determine the correct diagnosis, and treatment.

Far to often these test are carried out incorrectly giving the wrong diagnosis.

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I have had 3 Spirometer test in the last 2 years not going to have anything from now had enought, this is my third compalint at this doctors.

I try to look after my lungs but i do worry about my garage roof being asbestos it's not broken inside and looks good but worries me because of all the dust on the floor but i think it's from the concreate floor and block walls not the roof

06 Sep 2016

Coded entryForced expired volume in one sec/forced vital capacity ratio 69

Coded entryForced expired volume in 1 second 3.01 L

Coded entryVital capacity 4.35 L

Coded entryFEV1/FVC percent 70 %

Coded entryPercent predicted FEV1 80 %

Coded entryPeak expiratory flow rate before bronchodilation

7 Apr 2017

Coded entryExpected peak expiratory flow rate 610 L/min

Coded entryForced expired volume in 1 second 3.24 L

Coded entryOxygen saturation at periphery 98 %

Coded entryMRC Breathlessness Scale: grade 1

Coded entryFEV1/FVC percent 90 %

Coded entryPercent predicted FEV1 86 %

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They just don't seem to care to be honest.

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IN my experience if you are considered in the early stages then they don't give a d***. I get an annual review and that's it. My doctors won't even discuss my copd as they 'Haven't got time' and I am told to 'Book an appointment with the respiratory nurse as they know more than we do anyway'. That's it. I have had an x-ray but not until 3/4 years after my diagnosis. I was refused before on the grounds that it wasn't necessary and had to plead health anxiety (I haven't got it) from a sympathetic doctor to get one. Terrible isn't it. x

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Must all be useless then i don't understand they don't want to talk about it or give help

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They say they are too busy and to see the nurse. x

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I'm in the US here, I also had a PFT done where the technician did not follow the normal procedure, therefore gave the Doc false reading, I told the doc but he did not seem to be concerned, he immidiately prescribed Trelegy and a rescue inhaler. At the time I went to have the test, I told them that I was congested after inhaling lots of dust by accident. So on one hand my CT scan says minimal emphysema and the PFT says moderate. I can breath fine on my own no need of any medication even the rescue inhaler i stopped using because I did not need to. The medication doesn't stop the progression of emphysema it is used to control the symptoms that is what my pulmo. Doc said to me I had to get it out of him. Emphysema progresses anyway at different rates for everyone, taking good care of yourself help slow the progression, if not it might progress faster.

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Yes that's what i thought also this nurse is wrong i am waiting now for someone to call about my complaint.

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Hi beltyoussef here is an interesting interview with a top Pulmonologist about progression of emphysema. You may want to share it with your specialist too my.clevelandclinic.org/heal...

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It seems very odd that the nurse should be giving you advice through a third party, even if it is your wife asking with the best of intentions. In any case, surely you are the best judge of the inhaler’s effectiveness? I have a Ventolin inhaler which I barely use, and when they checked at the PFTs they found it had little effect. You seem to have a few problems with your GP. Is it possible to change doctor?

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Can't change doctors it's the only one in my post code area :( but i do have laods of problems and sick to them now. I Canceled my flu jab after that call will get in it done at the chemist. I did ask my wife to adk and she also said she could read all my notes because the nurse got my reocrd up on the screen.

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A very good point Carnival567 because here in US that is a violation of the HIPPA code ( 3rd party consent and or advice is prohibited) unless it has been signed off . It’s a privacy thing which of course has both good points and not no good points

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That’s all right then! It’s a nuisance not being able to change doctors though I do hope you are able to cope with that. Good luck xxx

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Not using this docotrs again now will leave it until i move or just go to the the hospital instead.

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