'Standing in front of the classroom feels like coming home'

In his youth, Jan van Putten (50) was able to live reasonably well with cystic fibrosis. But just as he had been working in education for a year, the disease caught up with him. 8 years ago, he received donor lungs. He and his wife Petra (49) share their story.

Jan: 'I have cystic fibrosis, or CF for short. As a result, the mucus throughout the body is thick. This causes a lot of problems, especially in the lungs. Life expectancy is now around 45 to 50 years. With a lot of exercise, I kept my physical condition up; in my youth I didn't suffer much. But it is gradually getting worse.'

'At 24, I was on disability benefits'

'After my training as a math teacher, I started teaching. After 1.5 years I was supposed to go to America for work, but just before departure I was hospitalized for weeks with a lung infection. After that, my lung capacity remained low and I had to stop working. That's how I ended up on disability benefits at age 24.'

'Jan kept having dips, after which he would bounce back again'

Petra: 'During my pregnancy with our triplets, who are now 22, Jan's health declined rapidly. One night Jan was very short of breath and in pain. From the emergency room he was immediately taken by ambulance to The Hague: he had pleurisy. He kept having dips like this. Then he would bounce back, but overall there was a downward trend.'

'After 8 months and 7 days of waiting, lungs arrived'

Jan: 'I kept saying: I'm keeping my own lungs until I'm 50, I'm doing way too well. I always had the faith that things would work out. Our faith also gives a lot of strength. In 2014, I still ended up on the waiting list for a transplant, and after 8 months and 7 days, donor lungs arrived. I said goodbye and went under anesthesia.'

'The transplant was called off'

Petra: 'They were about to saw open his sternum when the news came that an incipient tumor had been discovered in the donor. After a transplant, cancer cells multiply at lightning speed, so the operation was called off. When Jan woke up, we had to tell him at least 20 times that he hadn't gotten new lungs. After that, his health deteriorated further.'

'The whole street was decorated'

Jan: 'The waiting started again, but I was worried. In 2015 there was another call that there were lungs, again exactly after 8 months and 7 days! But this time everything went well. After that, things moved at lightning speed. Within a few hours I could breathe independently. And I wanted to watch soccer and eat a hot meal. A day later I could leave the ICU and the next day I was on the treadmill. After 3 weeks I was allowed to go home. The whole street was decorated. Wonderful to be home again after 9 months in the hospital.'

'You have to get to know your body all over again'

Jan: 'In the beginning I was afraid of rejection. And with new lungs, you have to get to know your body all over again. Working is no longer possible, but I could play some indoor soccer, and I can cycle and walk the dogs. I hadn't been able to do that in the past year. What is fantastic is that I am now a grandfather to a 1.5-year-old grandson. I get to experience that thanks to the donor. And I have since reached the age of 50. If things go well, I'll be around for a while longer.'

'A lot happens in your relationship, even after a transplant'

Petra: 'Jan always used to cough, that is also gone. And it was touching that the girls said: we can finally wrestle with dad now. They had never been able to do that. I would have liked to hug the doctor for a moment. We received good guidance, including psychological support. A lot happens in your relationship when one of the two is ill, but also when things improve after a transplant. We know people who broke up after a transplant, despite the struggle they went through.'

“I am especially grateful to the surviving relatives”

Jan: “I am incredibly grateful to the donor, and especially to the surviving relatives. Because perhaps they had to decide at the deathbed that the donor would grant me life. My gratitude cannot be expressed in words.”

“What I can do is raise awareness for donation. I do that with the Dutch Transplant Football Team, with players who have received a donor organ. After every match, I share on Facebook how happy I am that this team can exist thanks to all donors. We also play international matches, and there are European and even World Transplant Games. Last year we participated in the European Transplant Games in Oxford.”

“Giving information is great to do”

Jan: “Because of that gratitude, and because it is important that people know more about organ donation, I give presentations at schools as an expert by experience for the NTS. During the corona period that had to be online, which was quite difficult. After that, it was put on the back burner because I was often ill. But it is great to explain what is unknown to many people. My experiential story also brings out a lot.”

Petra: “He also talks about those 2 times 8 months and 7 days. By the way, the total number of days added together is exactly the number of cards Jan received in the hospital: 500!”

Video: Jan talks about his experiences

In the video below, Jan talks more about life after his double lung transplant and what it is like to share his story at schools as an expert by experience.