A kidney for Corwin – NRC

Corwin Winkelman kisses his wife Ilona Hartensveld Welteregen in the hall of the Amsterdam UMC. She takes the elevator to the fifth floor, vascular surgery. And he walks on to nephrology in tower F. They are 29 years together, last night they sleep for the first time under the same roof in another bedroom.

They will both be operated on tomorrow. They went into it uninhibited. Almost casual. But now, on his own in the hospital bed, the emotions rush through his body. « I have an angel on my shoulder, » he posts on Facebook. With the message the Hello Kitty-Kat is shown in the form of a kidney: Hello Kidney.

The next day, Corwin accompanies his wife to the operating room. After some last investigations, he also attracts a blue operation apron himself. With firm steps they drive him to the operating room where a medical team of Acht awaits him.

Autoimmune disease

Corwin Winkelman (56) is one of the 1.8 million Dutch people with chronic kidney damage. At the time of the kidney transplantation, at the beginning of December 2022, his kidneys are only 5 percent. They perform their tasks, such as removing waste from the blood and regulating blood pressure, insufficiently, so that his body poisons itself.

Kidney damage is often the result of diabetes or high blood pressure. At Corwin his kidneys were damaged by Berger’s disease, an autoimmune disease that he already had, but seven years ago after a big cold and a streptococcal infection woke up. Then his kidney function ran backwards.

When Ilona Hartensveld (51) hears that her husband needs a kidney, she knows: she wants to give him. And they are lucky: Corwin and Ilona have the same blood group and their tissue type is sufficient to be a transplantation match.

They plan the operation carefully: after the renovation of their new house and before the crowds at their company for school photography starts. It was also romantic somewhere, together in the hospital. An operation as an ultimate seal of their love.

Tension

A week after the operation, Corwin has a belly like a balloon. The waste accumulates. He can’t eat, not go to the toilet and hardly sleeps. The doctors do everything to prevent rejection. From a boost with prednisone to plasmaferesis, where the blood is filtered so that the antibodies disappear from his blood.

Corwin writes the tension on social media. He posts an update several times a day, and often also at night. Friends, family, colleagues and strangers start to follow him. Corwin receives many messages and likes. « I was in my phone, » says colleague An Bosma. « It was such a beautiful story, I wanted so badly that it would work. »

Two weeks after the operation he posts: « The adventure has ended. I have to reconsider the way I can lead my life. But first it is waiting for this precious gift to be removed from my body. »

A few days later An is sitting at his bed. Corwin is so bad that even his family has not yet visited, but Ilona wants An to tell about her plan. « If there is a second chance, I want to be your donor, » she says. She has discussed it extensively with her partner and is determined: she is healthy, her daughters are adults. So why not? « It can be a nice gift to myself if I can do that for someone else. »

Zombie

In the months after the failed transplantation, Corwin is dependent on dialysis. Three times a week he goes to the hospital where he is connected to a machine for four hours that takes over the function of the kidneys. The rest of the day he is usually tired and nauseous in bed. He is 54, father of a daughter of thirteen, partner, friend and entrepreneur, he is running fast, drums, and since he has survived a huge urge of life as a child as a child. Half a life is not a life for him.

A nurse recommends peritoneal dialysis, home dialysis in which the own peritoneum filters the waste from the blood and drains through a catheter. It sounds ideal, but while sleeping the catheter crawls up, which blocks the liquid supply and the machine shows a sharp alarm every one and a half hours. Corwin hardly sleeps. During the day he feels a zombie.

The Amsterdam UMC says that a second transplant is possible. Internist-nephrologist Neelke van der Weerd is even a great proponent of that. If it succeeds, his quality of life goes up, and his life expectancy. Of the kidney patients who start dialysis between 45 and 65, half die within five years. « That is a worse prognosis than with many types of cancers. »

The problem is the shortage of donor kidney. Since the amendment to the Donor Act in 2020, which means that everyone is potentially organ donor, unless you indicate otherwise, the waiting time decreased slightly, but there is still two to four years in front, depending on someone’s blood type. More for Corwin because he produced tissue elderly with the first transplant and is now seen as an ‘immunologically complex’.

The waiting list that Corwin stands for is a kidney of a deceased person. A kidney from a living donor lasts twice as long, but there is no waiting list for living organs. You have to find it yourself.

The three potential donors who spontaneously reported to Corwin and Ilona reported, including An, after research in the hospital is not found to be suitable. « Donors must be 100 percent healthy, and in that healthy body we will cut. You have to think about that, » says Neelke van der Weerd. Yet she increasingly sees that people donate a kidney. Especially on a partner, a brother or sister, but there are also friends, neighbors, people who know each other from football or who work on the same market. Of the 1,126 kidneys that were transplanted last year, 43 percent of a living donor came, 60 percent of that did not have a family bond.

Buttocks

Corwin and Ilona are entrepreneurs. Five months after the failed transplant, they launch a website to look for a kidney for Corwin. « I don’t want to die yet, so expose the buttocks, » he says in an interview with Hilversums News. He looks intensely in the camera. Ilona embraces him.

The call yields seventeen potential donors. One is Marjolein Blanken, the partner of colleague An. She saw Corwin once at a company party. « I was enthusiastic about the idea, so when An was not called for further research, I thought: then I will take the baton. » The fact that she was once born with the help of a sperm donor plays in the decision. « I know about my biological father that he donated from Altruism. I think it’s nice to follow in his footsteps. »

Marjolein appears to be suitable as a kidney donor – only: she is not a match with Corwin. They can participate in the national cross-over program. Hereby the donor of another donates a kidney to Corwin and vice versa. Four times a year there are matching rounds in which seven transplant commercials ‘contribute’ their couples to the Transplantation Foundation.

Anonymously

Six months later, Van der Weerd found the ‘Golden Nier’. The four of them go to the hospital: Corwin, Ilona, ​​Marjolein and An. They install themselves in their room and after the latest investigations they have lunch together in the canteen. Elsewhere in the hospital, another couple runs the same procedure.

With a cross-transplantation, the couples remain anonymous due to their privacy. It is also not relevant according to Corwin. Marjolein is his donor for him. « Thanks to her I will soon have a kidney. And a life. » He shakes his head emotionally. « I don’t understand that you are doing this for me. » You can only donate a kidney in life once. « I don’t just want to think of myself and my own little circle, » says Marjolein. « If An ever needs a kidney, I also hope that someone will get up to give her the chance of life. »

The first days after the operation, a repeat of what happened after the first transplant, more than a year earlier. Every time blood is taken, the message is: the kidney does not work. Corwin gets prednisone again, plasmaferesis again. After a week, Van der Weerd is at his bed. « It doesn’t look good, » she says. It seems that his body produces antibodies again. To prevent rejection, she gives him medication that lays down his immune system for a long time.

Corwin can hardly tolerate the idea that « a kidney from another has been crushed ». Before the operation he already told Ilona that he no longer wants to dialysis. What if it has to be done again, she wonders. Does he still want to continue?

Two floors lower is Marjolein in her hospital bed. It will not all have been for nothing, shoots through her head. She knew that there is a good chance that the kidney would not catch on. Yet she cannot prevent a cry.

If everyone has almost given up, the kidney starts to work. And he has been doing that for more than a year now. Bit by bit, Corwin catches up with the lost time with his wife and daughter. First carefully, to Antwerp, then to Paris, London and soon to Malaga. Thanks to medical science and their large network, Corwin has his life back.

Van der Weerd sees that many patients find it difficult to ask people in their environment if they can miss a kidney. Also for a public search question, such as Corwin’s, you have to be strong in your shoes, according to the nephrologist. « It gives hope if people are interested, but sometimes they want something in return or they cancel it. With that disappointment you have to deal with every time. »

For people who can use some help, there is the kidney team at home, which provides information to the patient’s network about all possible treatments in kidney failure, including kidney donation in life.

Marjolein has disappointed the recovery. Where Ilona was the old one after a few weeks, it took her almost a year. She never regretted it. She just has to look at the map she got from Corwin’s thirteen -year -old daughter. « You are a brave person. The world needs more people like you. »

Photographer Selma van der Bijl came into contact with Corwin and Ilona via the ‘Hello Kidney’ post on Facebook. She followed Corwin and his search for a new kidney for two years, from the beginning of 2023. To visualize the night dialysis at home, she stayed with the family for 24 hours.

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