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Old 29th May 2012, 08:48   #1 (permalink)
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Emphysema

I was diagnosed yesterday with emphysema. I've never smoked in my life and am in a state of shock at the moment. Have been getting out of breath easily when swimming, climbing stairs etc for a while, but had just put it down to being out of shape.

The doctor has prescribed me a Spiriva inhaler which I have tried to use this morning - not sure if I've got it right as nothing vibrated (I found a YouTube video which explained how to use it in detail and said you should feel a vibration).

Has anyone else out there had experience of this disease? I will be grateful for any advice.
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Old 29th May 2012, 09:00   #2 (permalink)
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Re: Emphysema

I can bet it did make you reel in shock, as always when thinking of this condition, naturally I thought smokers too, as this is the primary cause of this disease. I find the web pages I have copied for you very useful for any ailments I have googled, so hope this helps you.

Meanwhile, when you get to grips with using the inhaler, I hope you can get some ease. My Mother-In-Law has this condition, but she has been a smoker for the best part of 60 years, she has to have the oxygen regularly.

This really does make me want to continue to stop the smokes too.


Causes of Emphysema
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Old 29th May 2012, 09:01   #3 (permalink)
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Re: Emphysema

Unfortunately I can't help with your question, however I just wanted to say how sorry I am to read about it.

I hope another member can offer you some advice,

Charlotte
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Old 29th May 2012, 09:28   #4 (permalink)
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Re: Emphysema

Yeniyildiz, I also have this disease, but unlike you, it is self-inflicted, as I am a smoker.
I use the Spiriva inhaler also. Sometimes I don't feel or hear the vibration. I usually reload the inhaler with the same capsule, press firmly and quickly on the green button on the side of the inhaler, and try again. If I don't still hear the vibration, I insert a new capsule. This was the advise given to me by my Pulmonary nurse, as on the odd occasion, the little capsule can be empty.

Mary.
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Old 29th May 2012, 09:59   #5 (permalink)
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Re: Emphysema

I'm an ex smoker,so also self inflicted.
I would echo Mary's advice when using a Spiriva inhaler.
Jon
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Old 29th May 2012, 10:05   #6 (permalink)
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Re: Emphysema

I smoke only very occasionally when in big stress but because I am a sportswoman and diet, the effects are not too bad although I shouldn't do it of course.
I have nursed plenty of people with emphysema, and yes, usually smokers but here I think the reasons could be a combination of genetics, lack of exercise and also the disability from which you mentioned you suffer, Yeniyildez. I never asked what it was since I don't want to be indelicate, but illnesses and conditions all link into each other and cause a range of problems we don't expect.
For example, my mother had a severe UTI from which she is now recovering but cannot stand at all and her leg is very painful. This is all because of the UTI but one would never link such an infection with loss of use of the lower limbs.
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Old 29th May 2012, 10:51   #7 (permalink)
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Re: Emphysema

Quote:
Originally Posted by culturevulture View Post
Yeniyildiz, I also have this disease, but unlike you, it is self-inflicted, as I am a smoker.
I use the Spiriva inhaler also. Sometimes I don't feel or hear the vibration. I usually reload the inhaler with the same capsule, press firmly and quickly on the green button on the side of the inhaler, and try again. If I don't still hear the vibration, I insert a new capsule. This was the advise given to me by my Pulmonary nurse, as on the odd occasion, the little capsule can be empty.

Mary.
Thanks v much for this. The first capsule I tried I didnt realise I needed to breathe with the lid of the inhaler off (I thought the little ring at the top was what brought the stuff out!) Then found the YouTube video and tried again using the proper mouthpiece. Both the used capsules had very very tiny amounts of powder left inside them. I don't know if that means they werent properly filled (but they werent empty altogether) or if the powder was inhaled by me somehow. But there was definitely no vibration. I am afraid of trying again today, in case I did inhale some - I dont want to overdose.

Maybe I need to inhale harder?
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Old 29th May 2012, 11:15   #8 (permalink)
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Re: Emphysema

Quote:
Originally Posted by Istanbul_expat View Post
I smoke only very occasionally when in big stress but because I am a sportswoman and diet, the effects are not too bad although I shouldn't do it of course.
I have nursed plenty of people with emphysema, and yes, usually smokers but here I think the reasons could be a combination of genetics, lack of exercise and also the disability from which you mentioned you suffer, Yeniyildez. I never asked what it was since I don't want to be indelicate, but illnesses and conditions all link into each other and cause a range of problems we don't expect.
For example, my mother had a severe UTI from which she is now recovering but cannot stand at all and her leg is very painful. This is all because of the UTI but one would never link such an infection with loss of use of the lower limbs.
I've been plagued by health problems for most of my life .... always thinking I'll get over it and get healthy - and then something else comes along. When I was 3 years old I had measles badly my lungs collapsed and my epilepsy began. In my late 20s in the UK I had a lung infection (maybe pneumonia I dont remember). I was referred to the local hospital for an x-ray. They then told me there was a problem with their machine and sent me on to another hospital. I was later told that they had not been able to believe someone whose lungs were in that state could still be alive - and therefore assumed the machinery was faulty. But the second hospital got the same result. I had alot of health problems in my 30s and 40s .... much of it, I discovered towards the end of that time, due to wrong medication etc by UK doctors. (It was because of this that I decided to leave the UK.) I remember being in hospital there in my early 40s with pneumonia on 2 occasions at least. The medication they prescribed for 16 years continously I later discovered should not be used for more than 2 weeks...this was a couple of muscle relaxants, lorezepam and nitrezepam amongst other things ...and they definitely weakened my digestive system, eyesight and muscle strength generally.

Its possible I have had emphysema for a long time. I had a continuous series of very bad epileptic seizures last September, and was rushed into hospital (luckily a calm friend was with me when it happened). I was in alot of back pain, and the hospital did CT and MRI scans. (it turned out I had 7 broken ribs cauing the pain). But one of the doctors I spoke to mentioned there was an abnormality with lungs, but it wasnt relevant to the then current problem. It was at the back of my mind however since then ... and when I swam for the first time a few days ago realised I was getting ridiclously out of breath and decided there might be a connexion.

Interestingly, the doctor found the old scan records from September, but said they were 8 months old and so he didnt want to use them for a diagnoses. I had an X Ray done and he told me the September scan and the new XRay both showed the same thing. That gave me the impression that this was something that might just have gone away all by itself. But looking on the internet - it doesnt sound like that.

I'd be very interested to hear anything you have learned from helping patients with this disease.

Last edited by yeniyildiz; 29th May 2012 at 11:18..
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Old 29th May 2012, 14:47   #9 (permalink)
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Re: Emphysema

yeniyildiz, my husband had severe emphysema for many years, and i don't remember him ever saying the Spiriva had to vibrate! at least you didn't swallow the capsule, which it seems some people have done!

his illness was always blamed on his smoking, but he had pneumonia 3 times as a child, and when i met him in our teens, he already had severe bronchitiis, which then became emphysema, and he had been a welder all his life, long before health and safety rules.

as he passed away in December i can't ask him for any advice for you, but i would say keep as active as you can without struggling.
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Old 29th May 2012, 14:58   #10 (permalink)
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Re: Emphysema

Yeniyildez, yes, your health history explains your current condition - all the lung problems have eventually cumulated in emphysema. We never know what is the trigger but it could be just age or if there is a high degree of pollen or pollution where you live now.
I do so agree with Arrian - exercise is key - as always - but I would push it a wee bit beyond your comfort zone as taking it too easy doesn't usually produce results of any kind.
Now I wonder what your diet consists of? Certain foods can exacerbate the situation and I would steer clear of greasy foods and gluten products.
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