Interview: COPD

“At that point I couldn’t grasp it. I thought that if I stopped smoking and trained well, it would go away.”

It is more than 15 years ago that my doctor told me for the first time that I had pulmonary emphysema. At that time, I didn’t know what to make of it. He only said that I could grow very old with it and that it didn’t matter whether I smoked or not. I was glad to hear that then and did not worry about it anymore. I had always done a lot of sports and, until then, never had had any health problems. The disease developed very slowly and step by step. I didn’t really notice it.

Until 1999. I rode my bike in the morning when the weather was damp and cold and had to get off from time to time, because I couldn’t breathe. At first I thought I had a cold. But it didn’t go away and only got worse and worse. Then I was no longer able to get up the stairs after riding my bike. When I finally did make it I was completely drained and totally exhausted. Then I went to the doctor. He measured my lung function and thought that it must be asthma and sent me to rehabilitation. But the doctors there diagnosed me with pulmonary emphysema and COPD. They explained what emphysema and COPD were and told me clearly that it was not reversible and will continue to progress. At that point I couldn’t grasp it. I thought that if I stopped smoking and trained well, it would go away. I couldn’t understand it. I got medication there, including inhaled cortisone. These made me feel better again.

But it was from a self-help group on the internet that I really got all the information. Only then did I understand the disease I actually have.

COPD has changed my personal life a lot. I now depend on oxygen. Forever, as they say. I am on a leash with my disease and this is not going to change. My oxygen man comes once a week to replenish the oxygen supply. With the portable oxygen device I can leave the house for four hours. Then I have to refill it. I have a bigger device in the flat. For this summer, I have rented a tank for my car. I can be out and about a little longer with this.

Yesterday the weather was so lovely. So I went outside and stayed in town for a long time until the tank was empty. When the tank finally got empty, I did get a bit worried. I need oxygen especially when I am making physical effort, and for me walking is the biggest effort. Riding my bicycle can sometimes even be less tiring for me.

I have got a pulse oximeter to measure oxygen saturation in my blood. I can notice if it gets too low. Then I have no strength and start gasping for air and wheezing. I also notice that I cannot think so clearly, and that the sphincter muscles don’t work as well, either. Then I have the feeling that I am no longer really in control of my body functions.

Others might even notice it before you. I hadn’t noticed for example that I was coughing all the time. Other people noticed it and mentioned it to me. It took me a very long time to realize it. It is so easy to repress. There are so many other explanations you can give yourself: You are tired; you are exhausted; you have smoker’s cough. That’s why it is often not apparent how many people have this disease. Me too, I was in very good shape, in better shape than many others. I always thought that I could do anything and was in better shape than the others. I simply repressed it.

Actually, a lot revolves around the disease. My entire life revolves around it. I have a cleaning lady now. She comes every two weeks. I can’t do heavy work like vacuuming the carpet anymore. It is simply too tiring for me. So I let myself be helped, but I had to get used to it first. I also have to get used to the fact that people can see that I am not so fit anymore, for example when the cashier in the supermarket wants to help me put the things I have bought into the bag. But I go out anyway and don’t lock myself in. So I still manage to do a lot of things, because I try and stay active. I hope I can still do that for a long time.

Without medications, I couldn’t live at all. In the morning, I take a medication to widen the bronchi. This is for inhalation. Then I take something to loosen mucus. Twice a day I take inhaled cortisone.

This disease can be very distressing emotionally. I can see that in others.

Some of them fall into a kind of cellar, so to speak, and don’t come out of it anymore. I try to make sure that that doesn’t happen to me. I’ve got a good sense of humor, which helps, and you also need to get rid of your vanity, especially as a woman. You don’t only get old, but you also have the oxygen machine with the tubes. I can’t move anymore the way I’d like to. I know what it’s like when you walk along the street and can’t go on because you can’t breathe. You dread every time you have to walk in the cold. It’s very normal that this makes you sad. I know these times, too. But I’m still curious to see what is going on outside my flat.

Emotionally, I’m quite well prepared in many aspects. If I’m not well in a situation, a lot goes on inside me. If I notice that I start to panic, I stop and collect myself and then I can avoid an attack of breathlessness. I always have to calm down first, and try to breathe slowly. I then prefer to stand rather than sit down. I can calm myself down very well. I always need a bit of time, but it works very well.

I do know these attacks of breathlessness, however. Once at night, when I was in bed, I had the feeling that I needed to call an ambulance, for example. I couldn’t breathe and couldn’t lie down anymore, I sat there and my heart was racing. Not being able to breathe really is dreadful.

I used to have breathing difficulties especially when I was upset, especially when I was still working. My breath was just taken away. Sometimes things upset me that I didn’t realize beforehand would upset me. Something doesn’t go quite the way it should and then you repress this negative feeling and it comes back as breathlessness.

I smoked for many years. But I was always in better shape than others who didn’t smoke. I thought, well, it’s not good, but it surely won’t do me any harm, either. As it got harder and harder for me to get air, I stopped smoking. And then I needed artificial oxygen. I haven’t smoked for about six months now. It is just so hard to quit, I still feel tempted every now and then. When I long for a cigarette I try to eat something, but I often don’t feel like eating. Sometimes I do a bit of exercise and move around. This helps somewhat to get over the situation. I find it very hard and it will always be a problem for me.

I very quickly lose weight. If I don’t eat properly for two days, I’ll have lost two kilos right away. Breathing is heavy work for me – both day and night. I can’t eat that much, because that would put pressure on my lungs. If I really ate a lot, I would feel sick very quickly. I often don’t feel hungry and don’t feel like eating. That’s why I go shopping every day, to work up an appetite. I see different things and think that I could eat these now. I also enjoy cooking, but I don’t like cooking just for myself. That’s why I invite people to my place. Then it’s worthwhile to cook.

I don’t really talk to my daughter about how badly I am doing at times. I don’t want to put any more burden on her. My friends are very compassionate and considerate. And I am in contact with people living in my house. So I don’t feel lonely or abandoned. Although the disease keeps you from doing a lot of things.

For some friends it’s difficult to understand the disease. They would like to help me with everything. But I have to go out and make an effort. I have to keep doing the things I still can do. The only thing I really must do is to move. But it takes a lot of discipline to actually do the things on my own that I can.

I do exercise every day. I move every part of my body. I would also like to buy some dumbbells to get a little stronger. Now I am looking forward to summer. To move more again! I rode my bicycle again the other day. It wasn’t easy, but I can do it.

I have become somewhat fatalistic. I am 65 now and have been allowed to lead a life that was physically very active. And everybody has to die at some point. I know people who have the same disease and see how this goes on, and I am a bit prepared. What is going to happen to me is not very pleasant.

I often notice that people get frightened when I talk about this disease. They find it scary, because they are reminded of their own death.

Because of my life story I have had to deal with the subject of death several times. I now see life differently. I have experienced many painful things, but also many wonderful ones. And at some point it’s enough. With this in mind, many things become nicer and easier. I have already arranged for a place to be buried. When a woman in my house saw the brochure lying around, she said: “You shouldn’t be dealing with that at all, you shouldn’t even think about it!” But this is exactly what I have to think about. It is me who is concerned. I think that I have to take care of this myself. I have also set up a living will and organized my funeral. Once you consciously deal with it, it is no longer frightening. I also think that, apart from being born, it is the biggest adventure we go through [laughs].

More about chronic obstructive pulmonary disease (COPD): here


ACKNOWLEDGEMENT

These real-life stories were gathered during interviews with patients who generously shared their experiences with us. We are very grateful to these interview partners.

All of them have given their permission for these stories to be published here.

The opinions and comments in these stories are the opinions of individuals. They are not necessarily shared by IQWiG and are not intended to serve as recommendations to help people make decisions.

© IQWiG (Institute for Quality and Efficiency in Health Care)