Living with COPD: Experience of a COPD patient

Eberhard Jordan has stage 4 COPD, which is the end-stage of this disease. He nonetheless leads an active and happy life. Sport has a key role to play here. He explains in the interview how he came about living life to the full with COPD.

PARI blog: Mr Jordan, why do you actually have COPD?

Eberhard Jordan: For the same reason that I suspect most COPD patients do. I was a smoker for many years, didn't do any sport and didn't listen to my body. In 2000 I went to the doctor for the first time because I had a problem with my breathing. While it wasn't all that bad, going up the stairs and walking uphill were tiring. Back then, I was diagnosed with stage 2 COPD, which is when my doctor advised me to stop smoking. I ignored this advice from my doctor, as do most other smokers that are heading towards COPD. I didn't see the diagnosis as a warning signal, I thought: “You're just getting older.” But really, it should have been a massive wake-up call.

PARI blog: Why should it have been a massive wake-up call when you were diagnosed with stage 2 COPD?

Eberhard Jordan: I should have understood stage 2 COPD as the diagnosis that it is. It isn't some minor ailment but a serious lung disease that advances if you don't do anything to stop it. At stage 2 COPD you can still do something about it. You can't kid yourself that the disease can be cured. But you can stop it advancing and in doing so still stay healthy. Because the path that leads to stage 3 and 4 COPD can be very short and very brutal. But I didn't understand that. The term COPD meant nothing to me at the time. Even today, the public are not sufficiently aware of COPD, as I see it. Everyone is talking about diabetes or lung cancer. Everyone knows what they are. But nobody knows what COPD is and back then the term meant even less than it did today. That is why I was not shocked by the diagnosis. I just carried on smoking, drank too much alcohol and carried on not doing any sport. Years later it was payback time.

PARI blog: To what extent did your behaviour demand payback?

Eberhard Jordan: My health gradually deteriorated after the diagnosis of stage 2 COPD, until it finally hit rock bottom in 2014. I was out shopping when I suddenly could barely breathe. I had to keep taking a break after only a few steps. I felt dizzy. In the end all I could do was sit down and I wasn't able to get up from the bench. I called my daughter and shortly after that I woke up on the intensive care ward where I had to be respirated. I was in intensive care for 10 days. I didn't really take in much during my time in the intensive care ward. I was sedated because the doctors were evidently afraid that I would try to escape. I was really not very impressed at the idea of having to stay in hospital and fought against it, even though I felt absolutely lousy. The doctors diagnosed stage 4 COPD. They told my daughters that I would probably need nursing care.

PARI blog: Intensive care ward and the diagnosis of end-stage COPD. What did that do to your life?

Eberhard Jordan: Of course, my life was very different to how it had been. Once I was discharged from the intensive care ward, I couldn't even walk 10 metres on my own. I had to learn how to do that with a help of my daughters. I had no strength, no muscles and weighed only 43 kg at a height of 1 m 70 (6 1/2 stone at a height of 5’8). Everything was unbelievably exhausting. I felt extremely helpless. Whenever I left the house, someone was with me. I was scared I wouldn't make it back home alone and would have to call an ambulance again. The positive thing was that when I was discharged from hospital, from one day to the next I didn't want to smoke or drink alcohol any more. I also started training for my back and taking walks through the Prater park in Vienna – always accompanied by family or friends at first. It took half a year until I could go for a walk on my own and could manage to get to the bus stop so that I could travel to the fitness studio for my back training on my own.

PARI blog: It sounds as if this was quite a hard and stony path. Why did you still take this pathway and has it been worth it?

Eberhard Jordan: I am a father and grandfather. And I want to stay that way for a while longer. That was and remains my motivation not to give up and keep picking myself up again. Of course, it wasn't always easy to train, and it took an enormous effort. But it didn't take long for me to notice that the training and the walks were doing me good. It was slow progress, but every day was a little better. Now I can live my day-to-day life on my own and I can manage without someone else helping me. I am also able to regularly exercise.

PARI blog: That is good to hear. How do you manage your life with COPD and your day-to-day routine nowadays? Are there challenges?

Eberhard Jordan: Even though I feel much better today than I did several years ago, I do face day-to-day challenges because of my COPD. One example is hoovering. The pushing motion combined with the stooped posture were my entire torso is squashed makes it hard for me to breathe. Carrying shopping is another issue. While I can lift heavy bags and can walk easily, doing both at the same time is difficult. I just can't do it. I found a way around this problem by using a trolley bag. Every now and then I come across situations where my COPD is a challenge and I am overcome with breathlessness and panic. It does not always have to be physical exertion that causes it; stress can also trigger the problem.

PARI blog: Breathlessness and panic as a result of stress? Can you name some examples?

Eberhard Jordan: For example, I was out shopping to buy trousers. In the cramped changing cubicle I was faced with the choice of three pairs of trousers. I put myself under pressure and wanted to make a quick decision so that I could get the purchase over and done with. That made me feel stressed. And when I feel stressed, I often can't catch my breath. This is why it's important to me to avoid stress in as far as possible. The classic example: If I have an appointment, I try to be at least 10 minutes early so that it's not hectic.

PARI blog: Based on your experience what advice would you give other COPD patients?

Eberhard Jordan: Take the warning signs of COPD seriously in the early stages and take action; this means stop smoking, take medicines and exercise. I would advise patients with an advanced form not to give up and to build themselves up with exercise and sport, even though it can be very exhausting at the beginning. You can still do sport with stage 4 COPD, as you can see by my example. It increases your fitness in day-to-day life and improves your quality-of-life enormously.

PARI blog: Sport is an important issue for you. Every year you set your own personal challenge for the world COPD day. How did your recent challenge go?

Eberhard Jordan: The COPD-Challenge went really well. I climbed the Danube Tower in Vienna with my lung specialist and physiotherapist. It was over 770 steps. I did it without oxygen and managed it in about 50 minutes. That just goes to show: where there is a will there is a way – whether you have COPD or not. I'm very proud of myself and I hope that I can encourage other COPD patients with what I do to exercise and be consistent with their COPD therapy.

 

PARI blog: Mr Jordan, congratulations on this fantastic achievement and many thanks for the interview.

 

About Eberhard Jordan:

Eberhard Jordan was diagnosed with COPD in 2000. He has had stage 4 COPD since 2014. Since 2017, he has been writing a blog on the topic of Active Living with COPD. He also has a second blog with updates on his myCOPD Challenge campaign. On this blog he works to increase public awareness of the serious lung disease COPD.

 

Note on the image material: Photos including teaser image provided by Eberhard Jordan. Photographers: Christoph Hopf, Inka Schleicher.

 

An article written by the PARI BLOG editorial team.


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