Interview: COPD

"With COPD the strain is continuous. We always have problems getting enough air with certain activities or efforts and that day after day. Only when we are sitting down do we feel up to tackling practically anything."

The illness first appeared about 10 years ago [Editor’s comment: Helmut is now 63 years old]. But somehow I didn’t want to believe it. In time I noticed that my ability to function was slowly declining. I coughed a lot but told myself I was probably coming down with a cold. Not only did my stamina decline considerably, but climbing the stairs became more difficult and I was able to carry less weight. In general I was able to exert myself less and quickly had problems getting enough air.

But I was still doing relatively well. From time to time I got infections and became ill, but I was always able to get it under control. Then at the beginning of 2003 I had a serious infection and had to go to the hospital. The doctors there told me that I had pulmonary emphysema.

After my stay in the hospital I went to a rehab center. My goal was to quit smoking and to go back home healthy. I had been able to stop smoking in the hospital and could walk short distances again. Then I got a serious inflammation of the lungs and had to be transferred from the rehab center to an acute care facility. There the chief physician told me that I have COPD, but I never found out what that meant.

Once I was back home, my family doctor prescribed a stationary oxygen apparatus. It was a concentrator which I put in my flat. This concentrator draws in air and converts it to oxygen. I mostly needed it at night. I was doing relatively well at this time. And I started smoking again.

Then I got a serious infection again and had to go to the hospital. On the way to the rehab center afterwards I wasn’t doing at all well. Then I got furious and decided to quit smoking for ever. I threw the lighter and the rest of the cigarettes out of the train window and from that time on I have never smoked again.

At the rehab center I got very ill once more and had to be transferred to an acute care facility. There they slowly got me on my feet again. I was given cortisone and then I got better. However, since this stay in the hospital I have needed additional oxygen constantly.

Back home again, I had difficulty coping with all the equipment and, in general, dealing with the fact that I need supplementary oxygen. Everything had functioned well in the hospital. I was cared for by physicians and nurses and had my meals served. I fell into a black hole at home and didn’t know what to do with myself. I thought I couldn’t do anything anymore. I didn’t trust myself to go out on the street with all the equipment because I was ashamed. When I came home and saw a neighbor standing at the fence – I hid behind a tree and took off the nasal tubes and then went past without them. But in time it got better. Today I don’t have this problem anymore.

After a while I was taken to the hospital one weekend because of breathing problems. Today I know that I probably didn’t have an infection, but that the difficulty in breathing was psychological. There the doctors managed in about three weeks to give me courage to go on.

I participated in an asthma and COPD educational program while I was there and was able to meet people with problems like mine. It was during this program that I first learned what COPD actually meant, what treatments there are, which medications are helpful and exactly what happens with the oxygen supply. This course encouraged me to set goals in my life again. I went home with the goal of becoming active in self-help activities and taking up some sport. Now there is both a self-help group and a sports group in my town and life is a pleasure again.

After this course, I tried to get information, and I read a great deal and talked a lot with my pulmonary specialist and my family doctor. But talking to other people with COPD in the self-help group was also important. That helped me to accept my illness.

Asthma and COPD are often confused a bit. With COPD the strain is constant. We always have problems getting enough air when doing certain things, and that day after day. Only when we are sitting down do we feel up to tackling practically anything. There are limits that we have to live with, for example at a gathering with a lot of people where there may be smoking. But the most serious limitation for me is that I am no longer as mobile as I once was. I don’t have a car. I do everything with buses and the train or as much as possible on foot. But that is also good because I have to walk and climb stairs – I live on the third floor.

Twice a week I go to lung sports for an hour and a half. There I train on all the machines, on the bike and on the treadmill. The emphasis is on stamina and muscle training. We also do breathing exercises and breathing therapy with the trainer. After training I can feel that I’m doing better. The goal is not necessarily building up new muscles, but rather maintaining the existing muscles. The danger here is that you have no problems as long as you are at rest. But as soon as you exert yourself, you need air. So the risk is that you remain inactive and in the process neglect your muscles. After training we sit together and talk. This is incredibly important.

I take my medicine every day. This also varies from patient to patient. I use two different sprays in the morning and evening and in the morning I also use a powder that I inhale. For a while I was taking cortisone. But then my doctor decided to stop it because of the state of my health. The only side effects I have as a result of the cortisone are spots on my skin. But I can cover them, that doesn’t bother me so much.

We have fixed up an emergency packet with medications so that I can react immediately if something happens. If I am developing an infection, then I can begin taking medication right away so I don’t let it get too bad. I know what I should take. I have also learned several breathing techniques. These help me when I am nervous and have problems breathing. That way I can relax. We have agreed that when there is trouble with my getting enough air that I will take the emergency medication as arranged with my pulmonary specialist. Waiting for a certain amount of time and trying not to panic – that would be the worst. If the medication doesn’t help, then the emergency services have to be called.

I also measure the peak-flow values regularly and write them down. Now I do this electronically. Then I can print the values out at the end of the month or look at all of them in the course of the year. This is very practical.

I used to smoke 3 or 4 packs of cigarettes a day – on average that was 60 cigarettes. I tried to stop many times – without success. I know how hard it is. When I actually did quit, I made a vow that I would never again touch another cigarette. Today I no longer have any problem with that. Since I quit smoking I have had fewer problems with coughing. I only cough rarely and there is less phlegm.

I have figured out that I get out of breath more quickly when I am angry, when I am excited or when I put myself under stress or time pressure. Now I only plan to do a limited number of activities every day. When I have finished those, I can always decide whether I want to do something else. Then other things have to be accomplished on other days or just remain undone. You learn this over time and things become automatic.

You also learn some tricks over time. When I go out, I often take a walking stick umbrella even when the weather is good. This helps me when I walk or when I have to stop, so that I can relieve my arm and leg muscles a little. This umbrella is also an emotional support because I know if I’m not doing well, I have it for security.

I’ve been doing relatively well recently and my symptoms are under control. I take the medication as agreed with my doctor and so my illness has not gotten very much worse. I haven’t needed to go to the hospital in the last couple of years – it just hasn’t been necessary.

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)