Oxygen use for COPD patients

Hi Jacee,

Glad to hear you are getting sorted out and I do hope your swollen feet get better soon - I felt really miserable when mine ballooned last year.

Jacee, I couldn't help but laugh when I read that 'it is unusual for people with Copd caused by emphysema ......'. !!! If that is the case, why does every COPD book I have read devote pages to it? Also the NHS's own 'NICE Guidelines for COPD' explain about home oxygen often being needed when COPD is severe. That doesn't mean every single person needs it, it depends on their natural 02 levels obviously, but there are many people on it with emphysema - me included - and my FEV1 is 40% with meds! Also in USA, Canada, Australia etc even people who don't normally need it are tested repeatedly at intervals when doing Pulmonary Rehab as they may need to use it just while they are working out if their SATS dip - which is quite common apparently.

I know that there are COPD'ers on the BLF chat site too that are old hands with 02 - if you remember that's where I heard about the council tax reductions for those with home 02, so please don't think it's 'uncommon' in the UK. It is very expensive though to keep patients on it, which arouses the cynic in me somewhat.

Anyhow Jaceee, I am glad to hear that you are now the proud owner of a finger pulse oxymeter ! It is useful to have even if you don't stay on 02. As I said before, it enables you to check that all is OK when you get breathless, and can warn you that something is up if you get a sustained meaningful drop in your sat's. I couldn't be without mine now.

Talk to you again soon, love Van x

Sorry to go on about it Jacee, but the very first site I visited after just posting you had the following;

Emphysema cannot be cured and, except for oxygen, does not respond to any medication. However, emphysema is frequently associated with bronchitis and asthma and the symptoms associated with these processes often can be alleviated with medication (hence, you can see the value of pulmonary function and other tests designed to discover if there is asthmatic component present)

Hmmmm, I wonder what your Doc would say to that one :wink:

Hi Vanessa, I know just what you mean and do not know how I kept from laughing in his face!! Fortunately my guy is back from holiday soon and so I will see my regular chap then.

The plus though is that I am getting sorted and will then be able to go on holiday, as they are not willing to give me a letter confirming I am fit to fly until I am sorted out.

Not sure about the info you found in your last post though. I think most of us DO respond to medication of some sort or another, not to \"treat\" the emphysema as such but for example inhalers for relief of symptoms. And I don't have bronchitis or asthma alongside my emphysema.

Hope you are keeping well.

Jacee

xx

HI Jacee,

The excerpt I posted above was referring to the fact that Spiriva and other inhalers / meds can only affect the large and small bronchial tubes, not the emphysematous lung tissue itself ie Alveoli. While O2 can't affect damaged Alveoli, it makes up for our shortfall by delivering a higher concentration to the remaining healthy alveoli. In short, your Spiriva can help keep your tubes open to help get air to your lungs, but it has no effect on lung tissue / alveoli.

Also - I came across the following yesterday which throws some light on why some of us are better / worse off than others with identical FEV1 numbers. It was on an Alpha1 site, but applies to all of us. For me personally, the penny finally dropped as to why I need O2 when I am FEV1 40%. (Like you I have serious emphysema, damage to both upper and lower lobes of lung).;-

\"Interpreting your test results can be somewhat complicated, but here is what you need to keep in mind as you evaluate your FEV1 results:

Example: If the predicted normal FEV1 for an individual of your size, age, and sex is 3.0 liters, and your FEV1 is 1.0 liter, your percent of the expected normal value would be 33 percent. This does NOT mean, however, that you have lost 67 percent of your lungs, or that only 33 percent of your lungs are functioning properly.

Changes in FEV1 may not reflect what is going on in the lungs as a whole, especially in Alpha-1. There are Alphas who have virtually normal FEV1 measurements but severe emphysema, while others have very impaired FEV1 and only mild changes of emphysema on chest CT.This is because emphysema is a disease of the air sacs, while the FEV1 is much more reflective of what is going on in the bronchial tubes.\"

At last I understand why I can barely dress myself or walk at 40%, even with spiriva etc, while others with the same FEV might shower, dress etc with no problem. I had previously blamed it all on my weight and lack of exercise, but now I know it's because FEV1 doesn't actually measure lung damage per se, it is mainly measuring bronchial tube function. That said, I know weight and exercise are still big contributory factors to how we cope. It also explains why now i'm on 2LPM oxygen, I can dress, exercise etc relatively well.

Hope you found the above interesting / helpful. I thought I understood all about our 'numbers' until I came across that! :roll:

Luv Van x

Who'd have thunk it, we now have pulse oximeter ads all down the page!

Lets see what happens if we type 'Hand held spirometer' or 'stethascope'! :wink:

hiya jacee, sorry to hear that u havent been too good, (swollen ankles) this hot weather doesnt help. i just wanted you to know, your always in my thoughts, and prayers. you take good care, stay POSITIVE XXX :rose:

hello one and all its the old girl again. Just to add my bit - I can't be doing with all this research thing I know i've got COPD,empheysema and bronchiec stasis etc.,etc., and have read about it in the past. Over the years I have learnt quite alot about it and have also nursed people with it. It seems we are all individuals and can vary quite alot. There are people who need oxygen -called in the 'trade'\" - \" blue bloaters\" and others who might need it sometimes (me)\"\" pink puffers\". Your postings are very interesting and I'm learning more but I find all the 'science' baffles me. Just get on with life say I. Que Sera Sera.

Hi all,

Thanks to Vanessa for the research stuff, to Karen for her kind thoughts and to \"guest\" (I think this is Carole) for sharing her vast experience. It's lovely to know you are there; people who understand and have \"been there done that\" or know someone who has.

The first test is now complete - my saturation level dropped below 80 most every time I moved even though I was on oxygen and went down as low as 74% when I walked upstairs and 64% when I showered and washed my hair. Scary really. Hopefully this will help to work towards them setting a correct level for me, as what I am using is obviously not enough.

Thanks again for your input.

Jacee

xx

Oh Jacee,

I'm so glad you've got reliable evidence of your day to day sats - and no wonder you have been so exhausted and sob! I do hope they sort you out properly now and also get you fit to fly. Perhaps your edema will gradually clear when you've been better 'oxygenated' for a while - I hope so. I haven't had any at all since I've been on 02, here's hoping you will be the same. I hope your oxymeter will become your new best friend now too. Let us know when you are all 'sorted'. Lots of Luv, Van x

Hi there \"old girl\" :wink:

Good to hear from you again. Having read your post re 'blue bloaters and pink puffers', I've reached the conclusion that I'm some kind of Hybrid 'red bloater'! :roll: Luv Van x

Van, I'm glad you came up with pink bloater; I would describe myself as a blue puffer!

Jacee

xx :D

Maybe I should explain - because I am short of oxygen my lips turn blue when I exert myself :blue: and, of course, because I am short of breath I \"puff\" :puff: when trying to recover my breath.

Jacee