‘I had to give up a lot, but valuable things have come back in return’

What was wrong with your liver?

‘In March 2019, I thought I had the stomach flu, but after a week I went back to work anyway. I was a teacher and colleagues said: you look yellow. Eventually, I had blood drawn and my liver values were extremely abnormal. I underwent all kinds of tests and kept getting sicker. I don't remember much of that time. My brain was being poisoned, because if your liver doesn't work properly, waste products are no longer broken down. They suspected liver cancer. I was shocked, but also felt a sense of resignation. I discussed it with a small circle of people, but I avoided confronting my mother. My mother had already lost a daughter and I couldn't tell her this.’

How did things proceed?

‘I was admitted, but I don't remember much of that. The doctor told my family: it wasn't cancer, but my liver had stopped working and I had only 24 to 48 hours to live. My kidneys had also failed. I was transferred to Aachen for a liver transplant and was placed high on the waiting list. Family and friends had already said goodbye to me. Fortunately, a liver became available very quickly. When I was in the ICU after the transplant, I had severe delirium, with hallucinations. I saw terrible things and felt afraid, powerless, and lonely. In my mind, I had cancer; I didn't know about the liver failure. Later I thought: first I’m going to die and then I’m ‘saved’, because I get to keep living. But why am I allowed to? After all, someone died for it.’

How did the rehabilitation go?

‘I had always been athletic, participated in the Nijmegen Four Days Marches and running competitions. Now I bought a walker and set myself the goal of becoming physically stronger. Psychologically, I felt like I was learning to live all over again. With a psychologist, I received EMDR therapy to process those hallucinations. That helped. And I paid attention to nature and saw beautiful little things of value. But later, I developed signs of rejection. That caused panic, because now, after all the misery, I was going to die after all. Fortunately, the rejection was treatable in my case. Still, my liver values didn't remain good for the first few years. I did go back to work, teaching was my passion, but it was too much. I had to stop. That caused me a lot of grief.’

Do they know the cause?

‘No, unfortunately not, and that gives an uncertain feeling. Who knows if my children or grandchildren will ever get something like this. It is also difficult that my body let me down without knowing why.’

What does your life look like after the transplant?

‘In the beginning, I thought: now you can just continue living. But I have never been the same again. I have much less energy and had to give up a lot, like my work and running. Other things have come back in return. I live more calmly. For the NTS, I provide information about organ donation and I also want to do other volunteer work. I can enjoy small things, like an afternoon movie or a walk. Or our grandchild, a gift. During the pregnancy, I started sewing clothes. Very mindful. Letting go of things took effort, but I don't need such big things in life.’

How has this been for your family?

‘For them, it was a drama. My husband had to sign all sorts of things in Germany. Furthermore, they were left to fend for themselves. They saw me in a terrible situation, without guidance. Now, it has found a place for my husband and children, but they remain alert to my health.’

What has it ultimately brought you?

‘I enjoy the fact that I am still alive every day. I especially want to be there for the people around me. Taking care of each other and making the world a little more beautiful is enough. My story is different from most transplant recipients who were sick for longer, because for me, it came out of nowhere. At first, I didn't allow myself to feel grief for what I had lost. That is different now.’

How do you feel about the donor and their family?

‘I have great respect for the donor and the family. The first Christmas, I thought: by what right am I sitting here at the table? The feeling is indescribable. I am super grateful that I was allowed to receive this liver. After a number of years, I consciously told myself: it is okay, my old liver couldn't do it anymore. I have received something very valuable and I have to take good care of it.’