During one of my hospitalisations with my Asthma the news was broken to me that I could have developed COPD (this was confirmed at a much later date), I will NEVER forget the feeling, when they handed me a leaflet on Emphysema and COPD and just left me to deal with the news alone. I spent all night in the bathroom looking out of the window and crying. I just couldn’t handle it at that time. I said ‘will I die from this?’ and the nurse said, ‘we all have to die of something’, that definitely wasn’t what I wanted to hear at that time.
As someone who has written a journal on my journey with COPD for several years I often receive emails from frightened readers. Or notice a search engine query asking if COPD is a death sentence or how long do I have to live with COPD? “Will I live long enough to see my children grow up? Does this mean I will not see my daughter grow up, get married, start her own family? Or ever know my future grandchildren?” are often the first questions I read in emails I receive.
Many times this is followed by a Google session as the frightened patient types “how long do I have to live with COPD?”. To then receive some good, but sometimes frightening advice. One page I know informs the reader you will live five years at most from diagnosis. How wrong is that? I have suffered COPD for 28 years now. I have friends on my COPD network that have lived with this illness for longer than I. If that advice had been right, I would have been dust by 1992.
None of us will beat the reaper. We are all sadly going to die at some time in the future. But more than likely with COPD and not because of it, despite COPD being one of the major causes of death in both the USA and UK. I am not going to lie, COPD will finish some of us. But most will have managed their condition for very many years, with lots of fun-packed times put in before the inevitable happens.
The truth is how long you live once you have been diagnosed is up to you. Your life and how long you survive once diagnosed is literally in your own hands. How long you survive will depend on your actions because although COPD is progressive that progress, providing you do not smoke, is very slow. Just simple lifestyle changes can and will add years to your life. As your illness progresses through the stages there is no denying there will be many challenges, and if you reach stage 4, there might come a time when you need to use oxygen therapy. But the truth is you are much more likely to die of something other than COPD.
Terminal to me is having cancer and being told you have weeks or months to live. That is the time to do all the things you have been scared to do. A parachute or bungee jump for instance. Can you imagine me jumping out a plane with an 8 pounds oxygen cylinder on my back? I guess my jump will speed up a bit but have to admit to laughing when I think about it. Our job with COPD is to make sure the reaper waits as long as possible. To do that, all you need to do is manage your condition. Take your medications when you need them. Oxygen if prescribed. Do not smoke. Else you might not last five years. Quitting smoking slows the pace of COPD dramatically. Exercise as much as you are able. This will exercise the lungs and help to keep muscles toned. Muscle uses least oxygen. Try not to get stressed as stress causes lots of breathing problems. Try to stay positive and to keep positive people around you. Have ‘It’s good to laugh’, as your motto and laugh often. Ask your consultant for a COPD management plan and stick to it. Make sure you get a flu shot each year and pneumonia shot. If you become unusually breathless seek medical attention as soon as you can. If you do that, like me, you can live for very many years. In two years I have an anniversary. It will then be 30 years I will have lived with COPD – yet despite stage four I am still enjoying life.
Two years ago I learned of the death of a 66-year-old man from COPD. It was with sadness I read the reason. Despite having been prescribed oxygen, a false pride meant he would not use it. To him it was seen as a weakness to be seen using oxygen. Sadly his heart gave out under the strain of trying to give his body theoxygen he needed, and he died.
If you are prescribed oxygen it is to protect your vital organs including your heart. Oxygen when needed helps us to feel well and to breathe easier. I use oxygen for mobility and have no such false pride. Sometimes people look but everyone is polite and helpful. During the three years I have used oxygen not one has been rude. It is equally sad that many that do have mobile oxygen do not venture out their homes, in fear of what others might say. My thoughts have always been if someone has a problem with my cannula that is their problem. Not mine.
I hope this short piece has helped allay some of your fears of COPD, leaving you more able to start to feel less stressed and more able to move forward. Till I write again, keep that smile. But most of all, Breathe Easy.
I was diagnosed with mild COPD in 1987 when 39 years of age. Now at the very severe stage, I use oxygen for mobility and am disabled by my illness. Despite this I still have an extremely active life, and after more than 27 years of living with bad lungs, am living proof that we with COPD can enjoy a long life. I am often seen at events, meetings, restaurants, and publicity events though I wear a ‘nose hose’ for oxygen when mobile and a mobility scooter to get around.