My Story

It has been the most challenging time in my life as I have to ask this difficult question: “Would you consider being my donor?“

My Life with Kidney Disease

When I was 2 years old, I was diagnosed with kidney cancer. They had to remove one of my kidneys, and after four years of extensive treatment, it turned out that the remaining kidney had also suffered severe damage from chemotherapy and radiation. This made it certain that the remaining kidney would not be able to support me for a long life. Until last year, I was able to continue my life normally with regular checks and some diet restrictions.

Last winter, during an emergency hospitalization, it became clear that my kidney no longer functioned well, and I had to start dialysis. The doctor advised me to see the dialysis as a temporary solution and search for a living kidney donor because of my age. It is almost certain that I will need at least two transplant surgeries in my life, and a long time on dialysis weakens the chance of a successful surgery.

It has been the most challenging time in my life as I have to ask this difficult question: “Would you consider being my donor?”

I felt very lucky to see a lot of family members and other loved ones coming forward for screening, but unfortunately, none were a match or were advised to proceed further. My best option to live a full life is to find a living kidney donor in the short term, before the dialysis weakens my body any further.

Staying on dialysis for long periods can cause a lot of side effects and decrease the chance of success in a transplant surgery. Every year, an average of 1 in 6 dialysis patients dies. Half of the kidney patients who start dialysis between the ages of 45 and 65 die within five years (nierstichting.nl). Waiting for a deceased kidney donor can take years, and on average — if the operation goes well — these kidneys last much less than those from a living donor.

This is especially important to me because I am 32 years old, and I will likely need another transplant in the future. For both surgeries, I need to be in a healthy condition, which can only be achieved by minimizing time on dialysis and receiving a kidney from a living donor.

My Life on Dialysis

My day-to-day life is already being affected by dialysis. I need to stay at the hospital, connected to the dialysis machine, twice a week for 4 hours. I love physical activities such as bouldering, mountain biking, hiking, or exploring new places, but dialysis is restricting all of these because it makes me feel tired. People who are on dialysis for longer periods have even worse side effects, which means not being able to do most of these activities. Furthermore, because of the time spent at the hospital, I am missing work, and I am worried about the financial consequences.

I love life, and I always try to get the best out of any challenges. I like to focus on the positive side and create solutions. For example, I became very good at cooking because I have to restrict my salt intake. I love creating my own recipes and sauces to bring out the best flavors without the need for too much salt. Recently, I decided to create cooking videos for no-salt recipes to help others with similar restrictions. Even though I keep my positivity at its best, dialysis and the donor search carry heavy emotional consequences. This is a very difficult search, and although I know the chances are low, I still have hope.