'At the gym, I sometimes think: just look at me now'

Thanks to the lung transplant, Nico has his freedom back. Before the transplant, he constantly had to ration his energy. Now he no longer has to. "I can do spontaneous things. Meeting up with friends, for example, and going for another bike ride after working out. I can travel the world together with my boyfriend Michel and fully enjoy life."

New life

Ever since the transplant, Nico has his life back. "I no longer work, because that is too heavy. I have found another way to fill my day. For the Dutch Transplantation Foundation, I have been giving information about organ donation at schools and in hospitals for years. With my story, I make people think. I hope they talk about it again at home. That is my motivation."

Besides his volunteer work, Nico exercises a lot. He enjoys walking and cycling. "I am active every day. Exercising is good for everyone, but especially when you have had an organ transplant. I have been stable for years because I have found a good balance."

When traveling, he often feels how special his freedom is. "When we climb a mountain and see a beautiful view, I often well up with tears. Then I fully realize that I am still able to do this." He thinks that during ordinary moments, too. "During a group class at the gym, for example. Then I think: just look at me now."

Low point

That used to be different. Until he was 27, Nico was not bothered much by his cystic fibrosis. But after a lung infection in 2006, a long series of hospitalizations followed. "I was declared unfit for work. Eating was also going poorly. At my lowest point, I weighed only 43 kilos. You don't survive a lung transplant with that, and that was necessary. I had to gain 18 kilos for the screening to get on the waiting list. I was fed artificial nutrition through a feeding tube."

Nico slept a lot and experienced shortness of breath with every movement. He had to go on oxygen. "I did gain weight, but when you are pumped so full of food, you get nauseous. Because I wanted that screening so badly, I persevered." Infections caused him to end up permanently in the hospital.

Declining rapidly

After an emergency screening, Nico was placed urgently on the waiting list. Then the waiting began, for months on end. "I was extremely focused on my phone, but nothing happened."

Nico deteriorated even further. He was too sick for a lung transplant, so he had to be taken off the waiting list. Eventually, he was hooked up to an artificial lung and placed with urgency on the European waiting list. He survived blood poisoning and two lung hemorrhages. "I said goodbye to Michel five times. Until a miracle happened: I received donor lungs."

Grateful

On his 'second birthday', the day of the transplant, Nico lays a white rose at the Donor Monument in Naarden. "Afterwards, I celebrate with loved ones that I am still alive. Without my donor, I would no longer be here. My lungs are the greatest imaginable gift I could have received. The fact that I am doing well makes every year extra special."

Nico has a tip for others on the waiting list. "No matter how hopeless it seems, try to hang on. So much is possible. I am proof of that."