Can you stop COPD from becoming worse?

Bottom line, no. Unfortunately, COPD cannot be cured, and the prognosis is always bad. COPD will kill you – as it will me – directly or indirectly (unless something else, like an uptown bus, gets you first). Nothing you can do about that except have the mental fortitude to not let it dominate your life. Always bear in mind – worrying changes nothing. Ever.

When I was 17, I was told with great certainty, that I’d be dead by 40 – serves me right for demanding to know, I suppose (I’ve had the precursors to my COPD all my life – I’ve never smoked). However, as I got older, meds got better, so until very recently I’ve stayed pretty much in a state of equilibrium with my meds, and I’m still here; I’ve also stayed extremely fit, until the onset of ME/CFS in 1985, which has helped. However, I’ve continued, like everyone else with COPD, to deteriorate, but there have been no new drugs for over a decade, just tinkering with existing drugs to protect patents more than to benefit the patient. My meds were maxed out around 8 years ago – I’ve nowhere else to go, and if nothing new comes along, I’m pretty much screwed, but I’m cool with that – bugger all I can do about it anyway.

COPD can be managed – see my post Drugs for COPD which details my medication regime, but that’s only treating the symptoms – there’s nothing to be done for the condition itself. If your COPD is smoking-related then you must stop – that’s a no-brainer and, frankly, anyone who continues to smoke after a COPD diagnosis will do nothing but hasten their own death. Which will pretty much serve them right.

Improving general fitness will improve lung-function a little – the main problem with severe COPD, though, is that exercising is all but impossible. In my own experience, being as fit as you can be will slow the inevitable deterioration – I’ve got a hell of a lot worse since I’ve been unable to exercise. If you’re just starting life with COPD, then I strongly suggest getting as fit as you can, while you can; it will pay dividends later on.

I’ve found that intensive antibiotic therapy, taken in accordance with the GOLD guidelines,  is beneficial – I’ve bough my own for the past 5 years, and at the slightest hint of purulence – long before the infection gets a real hold, to the extent I can take it to my GP – I take a 7-day course and, having my own stock, I have the option to continue as long as it takes. I’ve needed a doctor only 3 times since 2004 – before that it was virtually every month. I get my antibiotics (Amoxycillin), here. It’s a company I’ve used for several years; they’re reliable, their prices are good and include postage. The drugs supplied are branded, and sourced from the New Zealand market.

I once had a GP who complained at the number of bronchodilators I have – 3 inhalers, a tablet and a capsule – and that’s entirely the wrong attitude. All my bronchodilators work differently, and so complement each other, and all are needed. A tight-fisted GP is the COPD patient’s worst enemy, and if that’s a problem, you really need to change. Beware, too, new GPs – they always want to change your meds, and you really will have to assert yourself if what you already have works for you. If your GP is in a health centre, you may be able to find another partner who meets your needs better.

Oh, and one final word of advice – find a pharmacy that dispenses branded inhalers, not generics. Generic inhalers, especially Salbutamol, are simply not as good as the branded ones, and I don’t care that those penny-pinching bastards at NICE say. Consider this – when conducting pulmonary function tests in hospitals, the gold standard is the Ventolin (Salbutamol) inhaler. Not cheap-ass generic substitutes. That should tell you all you need to know.

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12 thoughts on “Can you stop COPD from becoming worse?

  1. I agree. You have to be your own advocate. What works for one person may not for another. If it takes 6 inhalers, so be it.
    GP’s also don’t tell you the sequence (important) for taking the meds. Learned that at a pulmonary rehab session.

    The addition of Spiriva greatly enhanced my endurance, but didn’t work for a cousin. (COPD runs in the family)

    Since I get cooped up for the winter here in MN, I write a blog item twice weekly. Also make fun of the COPD from time to time.
    http://rambler-steveganshert.blogspot.com/

    • Hi Steve,

      I did have mixed feelings about this post originally, but so many questions appeared in my blog’s search engine stats asking if it was curable that there seemed to be a demand for the truth that some doctors weren’t meeting, and even though it’s not curable, with the right meds you can carry on for years.

      I’ll check out your blog later – I’m just shopping for a mobility scooter; summer’s on the way and I want to be able to get out of here.

  2. Hello Ron,
    You don’t say how old you are (at least I didn’t see it)
    I am 63 and have struggled with asthma since 16 yo.
    In the last 3 years I noticed that medication was making little difference to my peak flow readings.
    They dropped from a best of 500 to a miserable average of 290.
    It’s amazing how reluctant health services are to accept what you know to be true without running time consuming tests to confirm it. They have now decided that the asthma has become COPD, and I am the proud possesor of lungs which function at the level of a 90 yo!!
    I don’t blame them for carrying out investigatory tests, but what I really want from them is honest to goodness advice on the best way to maximise my quality of life.
    And that doesn’t always involve more medication. It might mean a change of location.
    Would like to hear from you as a fellow (and senior) COPDer.
    John

  3. Hi Ya-ll – My sister has had Emphysema with COPD for at least 10 years as far as I know. She was a smoker and now at the age of 62 has been diagnosed with End Stage COPD. Being her little sister, I refuse to let her to get away from me that easily. I have lost my entire family except for 5 of my 7 kids, my husband and my nephew in the last 8 years, so she has no excuse but to stay hereand suffer with me (just kidding). She need to start losing weight, eating really good food and saturating onesself with veggies and moderate exercise to keep herself alive. I believe from my research that there is some probability of this helping immensely. If any one else has started on a health to well- being regimen, please advise. Thanks in advance for your help. Mel

    p.s. – I have read of people living with endstage COPD for at least 18 years

    • Hi Mel,
      First of all, medication is probably the most important thing in your sister’s life – it’s where any extension to her life–span is going to come from.

      I’m not yet at end-stage (though there are days when I feel that it’s not far away), and this is a comprehensive list of my drugs https://ronsrants.wordpress.com/2008/06/06/drugs–for–copd/ . Not every patient has the same meds, but there should be a broad similarity. I would also expect your sister to have oxygen for perhaps 15 hours a day, maybe more.

      There’s a bunch of links, here, to posts concerned with COPD, and how to live with it https://ronsrants.wordpress.com/2009/07/31/all-my-copd-and-flu-posts-in-one-place/

      This, though, rather worries me:–

      She need to start losing weight, eating really good food and saturating onesself with veggies and moderate exercise to keep herself alive. I believe from my research that there is some probability of this helping immensely.

      If she were well, I’d agree with you, but she’s not. Good food is fine, exercise and extreme diets, not so much.

      With end–stage COPD, exercise is going to be very difficult, if not impossible, and should only be undertaken with the supervision of an expert in pulmonary rehabilitation. How much value that would actually be is questionable. Gentle exercise may yet be possible, more than that, probably not. It depends on many factors.

      Losing weight is always desirable. With COPD, end–stage or not – it can be well–nigh impossible. This is partly due to the enforced very sedentary lifestyle, and partly – possibly mostly – due to medication, particularly steroids, inhaled or oral. (high–dose inhaled steroids have the same side–effects as oral steroids).

      There is no medical evidence that the regime you describe will help “immensely” – it may not even help at all. Many people have gone to their graves earlier than they should because someone has convinced them that a diet very high in vegetables and/or fruit has a curative effect. It does not.

      What your sister needs is, as you said, good food – a high-quality, balanced diet will do her more good.

      There is, too, the fact that in COPD, it’s not only the lungs that are affected, it’s the heart, too – a condition called Cor Pulmonale (right ventricular failure), which I’ve had for some years. All but the gentlest of exercise is pretty much impossible. If you can barely breathe, and your heart can’t function properly, the scope for any exercise at all is very limited.

      As for people with end–stage COPD living for 18 years, that’s by no means the norm. An infection could take me off next week – the same applies to your sister or anyone else with severe COPD. COPD can kill, but respiratory infections, like pneumonia or even flu, and complications from flu, or heart failure, are more often the cause death.

      While I can understand your desire not to lose your sister, I’m afraid that the manner in which she lives whatever remains of her life is entirely her choice. It has to be, no–one else has the right choose.

      The best she can hope for is to try and get as much pleasure out of the time left to her. If she can derive pleasure from veg–loading, then fine, that’s up to her. If she finds beer and Big Macs, for example, more attractive well, that’s her choice too.

      I know that this isn’t the answer you wanted, but it’s the only answer I can, in all conscience, give you.

      Whatever time remains is going to be extremely unpleasant for your sister, and painful, too (not too many people realise just how painful COPD can be unless they’ve experienced it).

      It will be very difficult for you, too, but I would ask you, in all seriousness, to be as supportive as you can be, and help your sister to live out her life in her own way and try not to be judgemental if you should find you don’t approve of it.

  4. i was diagonized with copd. feel like my life is over at the age of 41.i have 2 have a spiremtry next week. 2 c what stage i am. i thought when you smoked cigaretts you get lung cancer. boy, was i wrong. never herd of this dreadful disiese. (sorry 4 my spelling) have other ailments. i think why me. i smoked for 13 years. but smoked more when i drank beer. if i can travel in a time-machine. i would of never smoked or drank beer.

  5. Hi Ron. Thanks for your site – very encouraging.

    I’m a 56 year old male and just been diagnosed with COPD. Bit of a bummer really as I gave up smoking 10 years ago when it physically hurt to inhale and I was getting breathless to the point of panic. Got diagnosed with asthma and the Ventolin helped, so we just went with it.

    Took up hiking recently to continue some healthy ideas and the hills stopped me dead in my tracks. Felt like I had a steel band around my chest. Didn’t hurt – just couldn’t expand. Doctor sent me for a hospital check to see if it was angina – which it wasn’t. Heart is fine. Blood pressure, cholesterol, whether I had diabetes – all peachy except it was COPD. It was the ‘D’ word that made me sit up. Disease.

    Seeing my doc in a couple of days to get set up with meds, regime advice, etc. Funny thing is, I didn’t feel shocked or scared when I was told. I think later that day I just felt a little sad for the little boy that was me all those years ago. I don’t know if that makes sense. Anyway, sorry to ramble on. This is the first I’ve ever said anything – even to my family. I’ll tell them over time.

    Thanks again. I like your attitude. A bit bolshy, like me. Cheers.

    • Hi Gerry,

      Disease is a bit of a misnomer – mostly it’s a syndrome, a pre-existing condition, in your case asthma, plus the development of emphysema, the defining condition for a diagnosis of COPD.

      You might already have found it, but there’s loads of COPD info here, but when it comes to meds the most important thing you can do is work out a timetable and stick to it rigorously no matter what, even if admitted to hospital. It won’t make you popular, but it IS your right to take your own meds to your own schedule.

      And always bear in mind that with meds a “day” is 24 hours, not just that part of it you’re awake, so three times a day is every 8 hours, twice a day every 12. You probably know that, it’s not rocket science, but a lot of people do get it wrong.

      Get a Volumatic spacer for your inhalers – ask your doc, makes them more effective and reduces side effects, especially from steroid inhalers (though not a lot you can do about the weight gain!)

      Hell, tell your family – it’s not a death sentence, I was diagnosed with COPD in 1996 – still here. And you can hardly hide your meds forever.

      And you can still carry on with whatever you do now – just do it slower. My lungs have been shot to hell since I was two, but I was still a cyclist, rambler and backpacker – just a slower one! The fitter you can stay, the longer you’ll live. Just don’t overdo it – it’s self-limiting anyway!

      Ron.

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