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

In recent years, Ambar has been through it all: becoming very ill, recovering, and then being seriously ill again. It started in 2017 while on vacation in Malaysia. She was 22 at the time. 'From one day to the next, my body became swollen with fluid. I couldn't walk anymore, I was so swollen. A doctor there thought it had something to do with my kidneys. I had to return to the Netherlands urgently. There was even a chance I would die on the plane. But there was no room in our regional hospital; I had to come back a week later. Then I was admitted immediately and sent shortly after to the AMC in Amsterdam. I had the disease FSGS in both kidneys. My kidney function was 35%.'

Aunt's kidney

Because it was serious, the family consulted about donation. 'Although we are a close-knit family, I found that difficult. But everyone said on their own: 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 even asked if she was sure about that. Because you can live well with one kidney, but there are risks to the surgery. It was amazing 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, there are different thoughts about organ donation, but for my immediate family, it is not a problem. It was never discussed in a religious sense. It also didn't matter whether the kidney came from a living or a deceased donor.' The bond with her aunt did become closer. 'She is my mother's only sister. I never saw her as an aunt, rather as a sister. We were already close and now even more so.'

Rejection of the kidney

After the transplant, 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, which she couldn't tolerate. 'During that time, I wasn't monitored well. I should have started using a different medication. Eventually, in 2022, I developed signs of rejection. New medications didn't help enough. Now that kidney is doing very little.'

Call for help

Since then, Ambar has been living in a vacuum. 'My brother became ill and is not allowed to donate a kidney because of the heavy medication. Furthermore, no one else in the family can do this. I posted a call 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 once you are on dialysis. And those 3 months of dialysis were horrible, I can't do that again. During that time, I only slept.'

Still hope

Regardless, Ambar is tough. 'After the rejection, the kidney was still working at 9%, but I boosted that to 20%. I have a strict lifestyle with fresh food, steamed or boiled, and lots of fruit and vegetables. That is difficult, but this way I can postpone dialysis. Mentally, it is heavy. Because of the medication, my emotions are intensified, and due to the low kidney function, I am forgetful. At 29, I already have what old people have. Sometimes I am desperate, because maybe I won't make it, but I cannot change it. And I have already been given extra years. But I can do little and am in a lot of pain. I do work 8 hours a week, because doing nothing is a decline. I do that at home. I keep hoping for a response to my call. I posted it because I have nothing to lose. Who knows, maybe one day a kidney will come.'