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

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

New life

Ever since the transplant, Nico has got his life back. "I no longer work, because that is too heavy. I have found another way to fill my days. For years, I have been giving presentations about organ donation at schools and hospitals for the NTS. With my story, I get people thinking. I hope they talk about it again at home. That is my motivation."

Besides volunteering, Nico exercises a lot. He likes to walk and cycle. "I am active every day. Exercising is good for everyone, but especially if 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 can still do this." He also thinks that on ordinary moments. "During a group class at the gym, for example. Then I think: look at me now."

Lowest 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 hospital admissions followed. "I was declared unfit for work. Eating was also difficult. At my lowest point, I weighed only 43 kilos. You cannot survive a lung transplant with that, and it was necessary. I had to gain 18 kilos for the screening to get on the waiting list. I was tube-fed artificial nutrition through a gastric tube."

Nico slept a lot and got short of breath from every movement. He had to be 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." Due to infections, he ended up permanently in the hospital.

Deteriorating fast

After an emergency screening, Nico was placed on the waiting list with an urgent status. Then the waiting began, for months. "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 removed from the waiting list. Eventually, he was hooked up to an artificial lung and placed on the European waiting list with urgency. He survived blood poisoning and two pulmonary hemorrhages. "I said goodbye to Michel five times. Until a miracle happened at the end of 2014: 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 most wonderful gift I could possibly 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 persevere. So much is possible. I am proof of that."