I know people who have the same disease

Photo of a woman deep in thought
PantherMedia / Phovoi R.

Catherine, 65 years old

“At that point I didn't understand. I thought it would go away if I stopped smoking and did my exercises."

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

Until 1999, that is. Sometimes when I rode my bike in the morning when the weather was damp and cold, I 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 and sent me to rehabilitation. But the doctors there diagnosed me with pulmonary and . They explained what and were, and told me clearly that it wasn't reversible and will continue to progress.

I wasn’t at all sure what COPD was

At that point I didn't understand. I thought it would go away if I stopped smoking and did my exercises. I couldn’t grasp it. I got medication there, including inhaled steroids. They made me feel better again.

But I only really found out everything about from a support group on the internet. Only then did I understand what I had.

has changed my personal life a lot. I'm now dependent on extra oxygen. And always will be, as they say. My disease has got me on a leash and that won’t change. My oxygen man comes once a week to bring me more oxygen. My portable oxygen device allows me to leave the house for four hours. Then I have to refill it. I have a bigger device in my apartment. I have rented a tank for my car this summer. So I can stay out and about a little longer.

I particularly need oxygen during physical activity

The weather was so lovely yesterday. So I went outside and stayed in town for a long time until the tank was empty. When the tank was finally empty, I did get a bit worried. I particularly need oxygen during physical activity, and walking requires a lot of effort for me. I sometimes find riding my bike less tiring.

I've got a pulse oximeter to measure the oxygen saturation in my blood. I notice if it gets too low. Then I have no strength and start gasping for air and wheezing. I also notice that I can no longer think clearly, and that my sphincter muscles stop working properly too. It then feels like I no longer have control over my body functions.

Others might even notice it before you. For example, I wasn't aware 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 they were right. It’s so easy to suppress. There are so many other explanations you can give yourself: You're tired; you're run down; you have smoker’s cough. That’s why it’s often not clear how many people have this disease. I was in very good shape, in better shape than many others. I always thought I could do anything and was in better shape than the others. I simply didn’t want to see it.

A lot revolves around the disease, actually. My entire life revolves around it. I have a cleaning lady now. She comes every two weeks. I can’t do more strenuous activities like vacuuming the carpet anymore. I find it too tiring. So I let someone help me, but that’s something I had to get used to at first. I also have to get used to the fact that people can see that I’m not very fit anymore, for example when the supermarket cashier helps me put my things into a 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 to stay active. I hope things stay that way for a very long time.

I wouldn’t be able to live without my medicine. In the morning, I inhale medication to open up my airways. Then I take something to loosen mucus. I also inhale steroids twice a day.

I’m really good at calming myself down

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

Some of them fall into a deep hole, 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’re not only getting older, but you also have the oxygen machine with the tubes. I can’t move the way I’d like to anymore. I know what it’s like to walk along the street and not be able to go on because you can’t breathe. You dread having to walk in the cold. It’s no wonder that this can get you down. It used to get to me too. But I’m still curious to see what’s going on outside my apartment.

Emotionally, I’m quite well prepared in many aspects. If I start feeling unwell in a situation, a lot goes on inside me mentally. If I notice that I’m starting to panic, I stop and collect myself and then I can avoid really bad breathing difficulties. I always have to calm down first, and try to breathe slowly. I then prefer to stand rather than sit down. I’m really good at calming myself down. I always need a bit of time, but it works really well.

But I still sometimes have serious breathing difficulties. For example, I once thought I’d have to call an ambulance when I was in bed at night. 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.

My breathing difficulties were particularly bad when I got upset, especially when I was still working. My breath was just taken away. I sometimes get upset about things that I never knew upset me. Something doesn’t go quite the way it should and then you suppress the negative feeling and it affects your breathing.

Breathing takes a great effort

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 I’m sure it won’t do me any harm, either. When I started having more and more difficulties breathing, I stopped smoking. And then I needed artificial oxygen. I haven’t smoked for about six months now. It’s 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. That helps the situation to pass. I find it very hard and guess it will always be a problem for me.

I lose weight really quickly. If I don’t eat properly for two days, I lose two kilos right away. Breathing takes a great effort – 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 soon feel sick. 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 then see different things and fancy eating them. I also enjoy cooking, but I don’t like cooking just for myself. So I invite people to my place. Then it’s worth the effort.

My friends are very compassionate and considerate

I don’t really talk to my daughter about how bad things get sometimes. I don’t want to burden her even more. My friends are very compassionate and considerate. And I get on well with people who live in the same building as me. So I don’t feel lonely or abandoned. Although the disease keeps you from doing a lot of things.

Some friends find it difficult to understand the disease. They want to do everything for me. But I have to go out and make an effort. I have to keep doing the things I can still do. The only thing I really have to do is move. But it takes a lot of discipline to actually do the things I can do on my own. I do exercise every day. I move every part of my body. I’d also like to buy some dumbbells to get a little stronger. I’m looking forward to the summer now. To moving more again! I rode my bike again the other day. It wasn’t easy, but I can do it.

I’ve become a bit fatalistic. I’m 65 now and was always able to lead a physically active life in the past. And we all have to die at some point. I know people who have the same disease and I’ve seen how it progresses, and I’m a bit prepared. It won’t be pleasant.

I often notice that people get frightened when I talk about . They find it scary, because they’re reminded of their own mortality.

I've had to deal with the subject of death several times in the past. I now see life differently. I've experienced many painful things, but also many wonderful things. At some point you’ve had enough. With this in mind, many things become more enjoyable and easier. I already know where I’m going to be buried. When one of my neighbors saw the brochure lying around, she said: “You shouldn’t be dealing with that, you shouldn’t even think about it!” But this is exactly what I need to be thinking about. It concerns me, after all. I think I have to take care of it myself. I’ve also set up a living will and organized my funeral. If you deal with it consciously, it's no longer frightening. I also think it’s the biggest adventure we go through, apart from being born [laughs].

Acknowledgment

Our real-life stories summarize interviews with people who are affected by the medical condition. Our interview partners have given us permission to publish their stories. We would like to express our sincere thanks to them.

The real-life stories give an insight into how other people cope and live with a medical condition. Their opinions and comments are not recommendations by IQWiG.

Please note: The names of our interview partners have been changed to protect their identity. The photos are of models.

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Please note that we do not provide individual advice on matters of health. You can read about where to find help and support in Germany in our information “How can I find self-help groups and information centers?

Updated on February 8, 2017
Next planned update: 2021

Authors/Publishers:

Institute for Quality and Efficiency in Health Care (IQWiG, Germany)

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