'Sometimes I am desperate, because maybe I won't make it'

In recent years, Ambar has experienced it all: becoming very ill, recovering, and then falling seriously ill again. It started in 2017 on holiday in Malaysia. She was 22 at the time. 'Overnight, my body swelled up with fluid. I couldn't walk anymore, I was that swollen. A doctor there suspected something with my kidneys. I had to rush back to the Netherlands. There was even a chance that I would die on the plane. But our local hospital had no room, I had to come back a week later. Then I was immediately admitted and shortly afterwards sent to the AMC in Amsterdam. I had FSGS in both kidneys. My kidney function was 35%.'

Aunt's kidney

Because it was serious, the family deliberated about donation. 'Although we are a close-knit family, I still found that difficult. But everyone said of their own accord: I'll get tested. Only my brother and my aunt were a match. And my aunt said: you'll get a kidney from me! My mother asked if she was sure about that. Because you can live well with one kidney, but there are risks to the operation. It was wonderful that my aunt wanted to do that. After 3 months of dialysis, I received her kidney in 2019.'

No issue

Ambar's family is of Surinamese-Hindustani origin. 'In that community, views on organ donation vary, but for my immediate family it's not a problem. It has never been discussed in a religious sense. It also didn't matter whether the kidney would come from a living or a deceased donor.' The bond with her aunt did grow closer. 'She is my mother's only younger sister. I never saw her as an aunt, rather as a sister. We were already close and even more so now.'

Kidney rejection

After the transplantation, life smiled upon Ambar. 'I started working full-time and could do everything again.' But that didn't last long. After a hospital merger, Ambar changed doctors several times, and she had stopped taking one of her medications because she couldn't tolerate it. 'During that time I was not monitored properly. I should have been switched to another medication. Eventually, in 2022, I started showing signs of rejection. New medications didn't help enough. Now that kidney does very little.'

Call to action

Since then, Ambar has been living in a vacuum. 'My brother has fallen ill and is not allowed to donate a kidney due to heavy medication. Furthermore, no one else in the family can do this. I posted an appeal on a website about living kidney donation. That is my only chance, because I am on the waiting list for a kidney, but you only build up points for a donor kidney when you are on dialysis. And those 3 months of dialysis were awful, I can't do that anymore. Back then I just slept all the time.'

Still hope

Be that as it may, Ambar is tough. 'After the rejection, the kidney was still functioning at 9%, but I've boosted that to 20%. I have a strict lifestyle with fresh food, steamed or boiled, and plenty of fruit and vegetables. That's difficult, but this way I can delay dialysis. Mentally it's tough. The medication has intensified my emotions and the low kidney function makes me forgetful. At 29, I already have what old people have. Sometimes I am desperate, because maybe I won't make it, but I can't change it. And I've already been given extra years. But I can do very little and I am in a lot of pain. I do work 8 hours a week, though, because doing nothing is going backwards. I do that from home. I keep hoping for a response to my appeal. I posted it because I have nothing to lose. Who knows, maybe a kidney will come along one day.'