'Meeting fellow-sufferers can mean a lot for ILD-patients'

Did you know there are patient associations for people with interstitial lung disease (ILD)? According to Rudy Roegiers, a Belgian ILD-patient, these associations can mean a lot for people with ILD. From being an energetic tram conductor, Rudy had to learn to live life at a slower pace. He lost some friends because of his disease and found out other patients can be a lot of help. 'Little tips can make all the difference.'

‘I'm suffering from lung fibrosis for six years now'

says Rudy, who is now sixty-one years old. 'At first, the doctors thought I had idiopathic pulmonary fibrosis (IPF). But now they think it might be extrinsic allergic alveolitis (EAA).' EAA is sometimes also called hypersensitivity pneumonitis. With this form of ILD, the little lung cavities are inflamed, which is caused by hypersensitivity to inhaled organic dusts. 'The doctors think I might be hypersensitive to hay', says Rudy. 'I like to be around the horses of my son and the moldy hay might have caused the EAA. So I have to stay away from the hay now.'

When he was fifty-five, Rudy noticed he was getting short of breath now and then. 'I couldn't ride the bike to work anymore and I was getting more and more tired. When I noticed I was getting very thin, I went to my general practitioner. He heard something in my lungs and referred me to the hospital for diagnostic imaging. He thought I had lung cancer, but in the hospital they told me I had lung fibrosis.'

After the diagnosis, Rudy his life would never be the same again. 'When I heard I didn't have cancer, I thought I could go back to work in fourteen days. But it has been six years now and I have never worked since.' Rudy was again referred, this time to the university hospital of Leuven. 'I was put on a waiting list for a lung transplantation. I almost got one, but this didn't go through at the last moment, because the donor lungs weren't good enough. I'm currently still on the waiting list, but not active. As long as it's liveable with my own lungs, I have to wait before I'm on the active waiting list again.'

You become an outsider and that's difficult to cope with. When your friends come to you, they see you sitting in a chair and say: “you look well.” But that's just when you see me sitting.  You might wonder whether I'm sick at all when you see me like that. But the moment I get up and have to climb the stairs for instance, I'm very tired and out of breath. But people don't see that. So they think you are exaggerating. You slowly get out of the picture and you start to loose contact with people. I'm very lucky I've got a nice wife and a nice son. I think that when you are single, you might fall apart because of the social contacts you lose.'

Rudy goes to medical rehabilitation twice a week. According to him, it's very important to keep busy. 'I try to do little walks with my wife, which always makes me feel better. I also try to do little household chores like ironing. You should try not to grind to a halt. And I still like to visit my son's horses. I see them outside now, I don't go into the stables anymore.'

One important tip that Rudy has for ILD-patients, is to join a patient association for lung fibrosis patients. 'In such an association you can really talk about your experiences and challenges', says Rudy. 'You get tips about how to handle your disease and what you can do to manage it. Maybe they're just little things, but sometimes they make all the difference. It can be about how to get through the day, or practical things like communication with local authorities and institutions.'