Inhalers??????

[johnwr]

For the last few days, I've been feeling a bit down, as if an infection was starting. But no fever, a little more mucus than usual, but otherwise just a bit listless and lacking energy, and getting breathless more easily than usual. Those of you who know me, know that last year I had pulmonary valves fitted, and since then have had improvements in my life beyond any expectations. This current episode was being a puzzle, it felt like an infection, but different., somehow.

Last night, while getting ready for bed went for my usual last doses of Ventolin and Atrovent. Did the shots of Ventolin OK, but fumbled the Atrovent. A good thing I did. The damned thing (inhaler) was empty. Produced nothing. Not even a tiny gasp of gas. So I got a new one and used that, Four shots.

When I woke up this morning, boy, did I feel different. All the poorly symptoms gone.

So, message to all of you. CHECK THAT YOUR INHALERS ARE WORKING PROPERLY. Do it now. Do it regularly. Don't do like I did and lose track of how old they are. They don't last for ever.

Happy Christmas everyone, and Best Wishes for the New Year.

Breathe easy, all of you.

Johnwr

[Hidden]

Yes a great reminder John. I am fairly new here, and was interested about your pulmonary valves,when you have free time, would love to learn a little about it.

Happy xmas and a breathe easy New Year xx

[Hidden]

Good advice John.

[libby7827]

D'you know what John, I use symbicort and when it's almost empty a red box appears in the window so you know it's nearly time for a new one but frequently, a couple of days before the red box appears, I feel as though they're not working. You hear about fake drugs like you hear about fake handbags and it has crossed my mind (jokingly) that I have a fake one. But, in all seriousness, who would know? Although am sure 99.9% of pharmacists are above board, there's bound to be the odd one or two who aren't, as in every walk of life (and death, ha ha!). Like the American guy who watered down all his patients cancer treatments and caused the deaths of a lot of people. It wasn't until an eagle eyed government employee noticed he wasn't buying as much when he was audited (or something like that), that it was investigated and exposed. Of course, he was charging the insurance companies the full amount. Makes you wonder.

On another note John, I have only heard about valves since using this site, can you tell me what type of copd they can treat. I have emphysema, even coverage of damge (not patchy), around 20% lung function. What is the criteria for valves? Libby x

[Hidden]

True take them without looking most times it's only when feeling off that I look at them or check up they have not been missed out of the routine that sets time of day and meds. Ventolin does not do much for me so save it for getting up on a morning as that is more of a chore than getting some shut eye.

[Jemma]

I use Seretide which has a counter. Well, the counter always works BUT that over the past 4 years I have had quite a few failures when the contents don't come out as the cannister is empty and the counter is reading something like 27 puffs left.

I now do my "cross eyed" look at the spacer to see if the contents are actually coming out!

A good warning John.

[libbygood]

Thanks for the warning John, I once took Spiriva (spelling?) and for some reason opened the capsule and it had still got alot of powder in it. Since then I always check, it hasn't happened again.

Lib

[libbygood]

I use seretide Jemma and I do the 'cross eyed' look to see if the mist is coming out, the first puff always seems like nothing then the second puff I can see the mist, I often wonder if I'm missing a dose. If I do a sample one first then it's wasting a puff and I'd run out before my next prescription.

Lib.

[caroleoctober]

To Wendells and Libby 7827 I am hoping to be able to have pulmonary valves fitted, Johnwr has written a blog on his experiances when having done, it is very interesting and informative and covers most of the points. I would recommend it, if you click on his name in blue it will bring up his home page and you will find it there.

Carole

[Hidden in reply to caroleoctober]

Thanks carole, will do,never thought of that!! Best of luck to you with it,will be interested to hear how you come along with it.Heres to a healthier 2013 for you xxx

[libby7827 in reply to caroleoctober]

Thanks Carole - I'll have a look. It's not so much what it involves, rather what is the criteria for being able to have them. Thanks! Libby x

[Kaiserdad]

I'm on Budesonide, I find the counter very good, there is always some left when the red bar closes.

The Spireva is also fine if you press the button sharply,

Salbutamol (Ventolin) is a different animal A) you have no idea when it will run out B) there are two types, the small can with the soft spray, I have to make sure it has worked. and the larger can that has a very positive spray. they both hold 200 doses. I have a system, I have one in daily use another is in a pouch on my belt for when I go out. when I get a new one it replaces the one in my pouch and that one becomes the daily one. that way I can never run out.

I hope this is helpful to somebody out there.

[johnwr]

Hi libby7827,

Nice to hear you interested in the valves.

The surgeons who are most experienced in fitting the valves that I have spoken to (I met a few at the seminar in Cardiff), all say that they prefer the patient to have emphysema that presents as fewer large cavities rather than many small ones. This is the first consideration that they look at as it gives the most obvious indicators for a worthwhile result. However, I believe that some good results have been achieved with patients with many small cavities, but these patients had emphysema of a very advanced stage, so there was a large amount of scar tissue involved. I think that what the surgeons are really looking for is a significant amount of lung sat on the diaphragm doing very little because it is compressed. They want this part of the lung to come back into play when the volume of the upper part is reduced by the valves isolating and collapsing the chosen section.

Until very recently, the surgeons had to apply to funding committees for permission to operate on a case by case basis, and so tended to look for patients with easy to argue symptoms. With the recent emphasis on COPD in general that has happened within the NHS, perhaps things are changing. But the surgeons are still going to want to see that a definite improvement is possible before going ahead.

Don't let anything I have said above put you off pushing for the procedure, the lower your FEV1, and other performance factors, the more likely you are to be chosen to go on to the surgeon's list. Other factors such as heart problems or other serious diseases may cause the surgeon to be less in favour of going ahead. But unless you are referred for consideration, you won't know. So go for it.

Happy Christmas and Best Wishes for the New Year to everyone here,

breathe easy

Johnwr

[libby7827 in reply to johnwr]

Thanks John. I'll ask my consultant next time I go (North West Lung Centre, Wythenshawe Hospital - am very lucky, I live very near). I have very advanced emphysema but was turned down for LVRS a couple of years ago as I have "all over" damage as opposed to "patchy". Was also turned down for a transplant due to having osteoporosis and chances of ribs crumbling, wasn't too miffed about this as prior to their decision I'd read a lot of info on transplants and had already decided it wasn't for me due to the recovery/life expectancy etc. I have a feeling I won't have enough, if any, clear area for these valves, but worth asking! Once again, thanks for your info, good job there are people like you here for us all! Libby x

[johnwr in reply to libby7827]

Just sent you a PM.

Johnwr

[Hidden]

apparently pharmacists are unwittingly giving patients illegally produced (and sometimes fake) drugs - as the baddies have managed to get their stuff into the system (according to a recent TV investigation) so yes, keep checking they are working as you expect them to. and if in doubt, get new ones.

[libby7827 in reply to Hidden]

Hi juliekay, they can make all the fake designer goods as they like so far as I'm concerned, and let's face it, the real ones are 99% overpriced anyway. But to mess with people's lives is unforgiveable and anyone caught dealing in illegally produced prescription drugs should be charged with attempted manslaughter. Sounds strong, but that's how I feel . . . grrrrrr! Libby x

[johnwr in reply to libby7827]

Those people are terrorists, and should be treated as such. I don't see any difference between what they do and someone who leaves a bomb at the side of the road. Either is going to kill someone/.

Johnwr

[Hidden]

quite agrrrrree they should be forced to face the people they have harmed. x