When Hans Hofstee was diagnosed with idiopathic pulmonary fibrosis (IPF), he didn't resign himself to fate. He became a board member of the Dutch patient organization for lung fibrosis and committed himself to creating awareness of IPF. 'When you are a potential IPF-patient, early identification may prolong your life.'
I have chosen a different attitude. I want to make the best of it
About eight years ago, Hans Hofstee, then in his mid-fifties, developed a persistent cough. 'I went to see my general practitioner', Hans says. 'He sent me to a pulmonologist, who thought of lung fibrosis. Shortly after that, a Dutch specialist in IPF confirmed this diagnosis.' Since then, Hans has learned to adapt to his disease. 'At first I didn't like to be confronted with my disease', Hans says, 'but for a while now I have chosen a different attitude. I want to make the best of it.' Due to a reorganization, Hans lost his job a couple of years ago. But he decided not to lounge around. 'I work as a volunteer in two hospitals. I enjoy doing this work, but certain things, such as standing up all day, take a lot of effort. In the afternoon I'm pretty tired and I have to lie down for a while. I also sleep a lot more than I used to.' According to Hans, the tiredness is the result of him having to work very hard to inhale enough oxygen. 'That can be tiring. I can still do a lot of things, but I just have to do it at my own pace.'
Despite the IPF, Hans still tries to do as many nice things as he can. 'When the weather is nice, we go out on our boat, for example. I also have two beautiful daughters and I build model airplanes as a hobby.' Hans states that the IPF hasn't really changed his social life. 'Because I try to create more awareness for IPF, people around me know I have this condition. They take that into account and do understand why I walk a bit slower than everybody else. For example, this spring we went to Porto with some friends, and they know I have IPF. So we went out on trips that were most suitable for me. But of course there were situations in which I was slower, and the whole group was waiting for me. Those moments can be a little difficult, but luckily, I get a lot of understanding from the people surrounding me. And as a patient you can adjust. I started to ride an electric bike, for example.' Hans points to the fact that inactivity is one of the biggest pitfalls to an IPF patient. 'Because the smallest things can become exhausting, you might be tempted to stay at home more and more. But it's important to stay as active as possible, because that gives you a better overall condition.'
As board member of the Dutch patient organization for lung fibrosis, Hans tries to create as much awareness of IPF as he can. 'In The Netherlands, there are around 4000 IPF-patients, so it is a relatively unknown disease. A general practitioner may see one or two cases of IPF in his entire career. When he misdiagnoses a possible IPF patient and prescribes COPD medication for instance, this is not effective at all. So it is very important that general practitioners are familiar with IPF. The sooner the IPF is diagnosed, the sooner the right therapy can be started. Early identification may prolong an IPF patient’s life.' The goal of the Dutch patient organization for lung fibrosis is to look after the best interests of patients with IPF. 'For example, we organize nationwide pulmonary fibrosis days', Hans says, 'where patients can meet each other and share experiences. And we also publish an informative magazine and participate in a lot of work groups and initiatives around IPF. We are a very active participants.'