Why have I got COPD, I’ve never smoked?

This is another question from my search engine listing.

First of all, it’s a common misconception that you have to smoke to develop COPD – you don’t. However, COPD doesn’t just appear out of the blue. For example, I have COPD and I’ve never smoked. I do, though have two conditions, asthma and bronchiectasis, which I’ve had since age 2, which with time and deterioration have become COPD.

COPD – Chronic Obstructive Pulmonary Disease – is a portmanteau condition. In my case, for example, I still have my original illnesses, the accumulated damage from a lifetime of respiratory infections, and some years ago I developed emphysema – and it’s generally accepted that it’s emphysema that is the defining condition in COPD. To develop emphysema, of course, some form of long-term respiratory illness is required – either like mine or caused by smoking – it doesn’t just appear unprovoked.

Without smoking, COPD requires an underlying condition, as in my case – it can’t just appear full-blown from nowhere, so if you’ve been told you have COPD and you don’t have a pre-existing condition or conditions, and don’t smoke, then frankly, I’m baffled.

COPD is never good news and the prognosis is always bad. That’s not to say you’re going to die next week, but you need to come to terms with the fact that it is incurable (I’ve put links to my medical COPD pages in this post ). It can, however, be managed, often quite well – my COPD was diagnosed over 12 years ago, and I’m still getting by. The important thing is not to let it dominate your life psychologically. Personally, unless I’m writing about it, it hardly ever crosses my mind, and that’s as it should be. It’s been with me for a long time, and will, with luck and good management, be with me for a long time yet – obsessing about it will accomplish nothing. Except in one respect – you need to be somewhat obsessive about staying away from things that will make you worse, which is much easier than it was, now that smokers have been cast into the outer darkness (not without much wailing and gnashing of teeth!).

It can require quite a lot of medication if you are to remain reasonably active for as long as possible (there’s a link to my medication on the above post). It also requires a degree of discipline when it comes to taking your meds – I use the alarm function on my mobile phone to make sure I take them on time. And that’s vital – there’s no point just taking your meds when you remember – that’s just not good enough – you have to work out a timetable. I take the main instalments of my meds at 12-hourly intervals, and my inhalers at 08.00, 13.00, 17.00 and bedtime. The long gap between 17.00 and bedtime, at some time after midnight, doesn’t matter as I’m relatively inactive in the evenings because of my ME/CFS. That works for me – someone else might need different timings, says every 6 hours round the clock. That’s probably what I should do, but it disrupts my sleep, which can be hard to come by.

If you get a diagnosis of COPD from your GP, it’s worth asking for a referral to the chest clinic at your local hospital (and if you’ve had no pre-existing problems, that’s essential, to make sure the diagnosis is correct – lung cancer has similar symptoms), and seeing if they’ll send you for a full-scale assessment at the Pulmonary Function Laboratory (most large hospitals have one). This will establish exactly how badly you’re affected and, just as importantly, will give you access to the best medication. If you look at my med list, it’s a lot, but it’s the result of my trip through the PFL, and there’s nothing there I don’t need. A PFL assessment, by the way, takes 2 days (or, at least, mine did).

You’ll find a lot of information scattered throughout this blog about COPD and benefits. The post linked to above also contains a link to my COPD and DLA page, and if you type COPD into the search box, you’ll turn up more stuff.

Finally, the best advice I can give you is don’t worry – worrying never changed anything one iota.