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

In his youth, Jan van Putten (50) was able to live reasonably well with cystic fibrosis. But just a year into his teaching career, the disease caught up with him. 8 years ago, he received donor lungs. He and his wife Petra (49) tell their story.

Jan: 'I have cystic fibrosis, or CF for short. This makes the mucus throughout the body thick and sticky. It causes a lot of problems, especially in the lungs. Life expectancy is now around 45 to 50 years. I kept my fitness up by exercising a lot; I didn't have many issues in my youth. But it gradually gets worse.'

'At 24, I ended up on disability'

'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 leaving, 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 at 24.'

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

Petra: 'During my pregnancy with our triplets, who are now 22, Jan deteriorated quickly. 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 these kinds of dips. 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'll keep my own lungs until I'm 50, I'm doing way too well. I always had the confidence that things would turn out okay. Our faith also gives us a lot of strength. In 2014, I was put on the waiting list for a transplant after all, 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 just about to saw his sternum open when the news came that an early-stage tumor had been discovered in the donor. After a transplant, cancer cells multiply rapidly, so the operation was called off. When Jan woke up, we had to tell him at least 20 times that he hadn't received new lungs. After that, he deteriorated further.'

'The whole street was decorated'

Jan: 'The waiting started again, but I was worried. In 2015, we got the call again 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 was off 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 doesn't work out anymore, but I could play some indoor soccer, and I can cycle and walk the dogs. I hadn't been able to do that for the last year. What’s fantastic is that I am now a grandfather to a 1.5-year-old grandson. I can experience that thanks to the donor. And I have now 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 coughed, that's over too. And it was moving that the girls said: we can finally roughhouse with Dad. They had never been able to do that. I would have liked to give the doctor a hug. We were well supported, also psychologically. A lot happens in your relationship when one of the two is sick, but also when things get better after a transplant. We know people who split up after a transplant, despite the battle they fought.'

‘I am especially grateful to the next of kin’

Jan: ‘I am incredibly grateful to the donor, and especially to the next of kin. 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 the 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 nice 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 done online, which was quite difficult. After that, it was put on the back burner because I was sick a lot. But it is nice to explain what is unknown to many people. My personal story also triggers a lot.’

Petra: ‘He also talks about those 2 times 8 months and 7 days. By the way, the 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.