Julie looks like any 15-year old girl. She attends school, goes out with her friends and is in to musical theatre. But in spite of her young age, Julie has been hospitalized several times and gone through five lung lavages after being diagnosed with pulmonary alveolar proteinosis (PAP). Julie hasn’t been to the hospital for years now. And she is beginning to feel normal again.
Julie was only 11 years old when diagnosed with PAP. The doctors thought she had asthma and had given her several inhalators. But the coughing and shortness of breath just got worse eventually making it impossible for her to take the five minute walk to school. Finally, she got a lung x-ray at the hospital.
“The x-ray showed that something was wrong, but the doctors still didn’t know what. I was put in an ambulance and driven to another hospital, where they put me in isolation. I remember that I didn’t understand the severity. I was more annoyed with not being in school. It was my first day at secondary school, a big day, and I was stuck in isolation.”
Julie missed more than the first day of secondary school. The next year the main focus was to stabilise the disease. She was hospitalised several times to have a number of whole lung lavages and she got medication and extra oxygen to help the breathing. It all made it almost impossible to attend school and Julie missed a lot of classes.
“I had no choice but to lower my ambitions and study as much or as little as my health allowed me to. It was annoying, but I could not do much about it. To get up at 7 o’clock in the morning, go to classes and also be sociable is extremely exhausting. And all my energy was put into breathing.”
Julie learned to prioritise. Although ambitious she realised that she did not have the energy to do well in all classes.
“You cannot prioritise school over health. Studying takes a lot of effort and you have to be careful that you don’t push yourself too much. You should only do what you are capable of. For me it meant that instead of trying to do well in all classes I prioritised a few classes that I put my effort in to doing well.”
The social part of school was also challenging. Julie was not able to attend many activities and several of her friends did not understand what was going on with her.
“You find out who your proper friends are, when you get ill. When I was in and out of hospitals and studying part time some of my friends disappeared – and others stayed. I was very honest to the ones who stayed. I told them about my frustrations. I even let them see me use oxygen. That was an overcoming. I did not like that people could see the tubes in my nose. I remember that I was not a fan of sleepovers in that period.”
Today Julie is studying fulltime. She hasn’t had a lung lavage for years, she rarely coughs, and she doesn’t need her oxygen anymore. She still gets medication, but four years ago it was every day, now it is only in the weekends. She has even started doing musical theatre where she sings and dances.
“Of course I get tired when I dance a lot or we have a show. But I am not the only one short of breath and tired. I am just like everyone else.”
Julie has even been on a school trip to Rome and she had a great time without worrying too much about her health.
“I feel a sense of normality again. I could fly and I could walk for miles through Rome. We had a tour guide who was walking really quickly. I said to my friends that I could not follow speed and we walked slower together. And yes, I did feel tired now and then, even when slowing down – but then I looked at my friends and they too, felt exhausted. So the tiredness was normal – like I am. And it feels great.”