Bastiaan received a kidney from both his mother and father

Bastiaan (42) has been living with a hereditary kidney disease for years. At 18, he received a kidney from his mother. In 2022, a second donation followed, this time from his father. Those procedures gave him his life back. Now he is worried about his son, who turns out to have the same disease. Bastiaan wants to support him – but in his own way.

A rare kidney disease

Bastiaan exercised a lot and attended the maritime academy. But when he was 17, he developed serious symptoms. His body was retaining fluid, his blood pressure was high, and he had protein in his urine. The diagnosis came quickly: his kidneys were only functioning at 12%.

Later it turned out he had a rare form of FSGS type 2, a hereditary disease that is almost non-existent worldwide.

Living on dialysis

Because of the disease, his dreams went up in smoke. "My life was suddenly hanging by a thread," says Bastiaan. Dialysis became a part of his life.

In 2000, at the age of 18, he received a kidney from his mother. Shortly after, a difficult period followed due to rejection symptoms. Fortunately, the treatment worked.

A new start, but also panic

After the transplant, Bastiaan felt reborn. He regained energy and was able to exercise and work again. But the transition from sick to healthy was huge. "I was in a hurry to live, but was terrified of getting sick again." He had panic attacks and had to learn to deal with his new situation.

A special bond with his mother

The donation created a deep bond between Bastiaan and his mother. "She gave me life twice." Yet he felt guilty towards other dialysis patients. Why him and not them?

He decided to take good care of the kidney – that was his responsibility.

A new kidney from his father

After 22 years, his mother's kidney began to deteriorate. Bastiaan became tired again. In 2022, he received a new kidney, this time from his father.

This also created a deeper bond with his father. "Our hugs are more intense. I feel it in the nuances."

Worries about his son

His son Julian turned out to have the same kidney disease at the age of 9. That news hit hard. "But his story is not my story," says Bastiaan. He wants to support his son, but also give him the space to go his own way.

Sharing his experience

Bastiaan can no longer donate a kidney himself, but wants to do something for others. "I use my story to create awareness. And I can guide Julian well as an expert by experience."

A tattoo with meaning

After his second transplant, Bastiaan got a large tattoo: 'It is a lion with the ankh, an Egyptian symbol for life, between its eyes. There is a scratch over the eye and nose, which represents the scars of my illness experiences. Below that is Julian. For me, this tattoo is more than just a picture. A kidney disease is invisible, and with the tattoo, I want to make the disease visible and talk about it, and spark the conversation about the importance of donation.'

"I can be his pilot"

Bastiaan wants to help his son wherever he can. "I can be his pilot," he says. "I can prepare him, guide him, and teach him how to deal with what he feels. Even though I cannot take away his pain, I can help him."