Fighting for kidney transplantation in Serbia

Ivana Jovic from Serbia tells her story of advocating for a better transplant system in Serbia. She was diagnosed with polycystic kidney disease at a young age and shares her struggle of waiting for a kidney transplant while balancing her life between dialysis, her daughter, and her work.

My story began when I was 17 years old. My mother had polycystic kidney disease (PKD), and the doctors told her that she should check if her children have that hereditary disease too. On ultrasound diagnostic, my sister was fine, but doctors found cysts in my kidneys. From that moment, I started a diet and regular check-ups with nephrologists. Unfortunately, in Serbia, there are no medications or supplements such as Tolvaptan [Editor’s note: a medication that affects how the kidneys control the concentration of urine]. Therefore, everything that could be done before starting dialysis was a diet.

My mother had been on dialysis for about two years before receiving a transplant. However, in cases like mine, where the diagnosis came at a young age, you would think that the health condition would worsen when getting older, leaving more time before starting dialysis. In my case, my problems and dialysis started early, after I had a baby at 33.

I wrote in my diary about this period: [8/12/2020] For several months now, I have been feeling apathy, a lack of strength and energy. I started dialysis. Maybe it seems strange to people, but I have been born again. Maybe they expect me to wail as my blood stretches through the tubes, as they prick me with needles as thick as sewing needles. But I don’t. I don’t allow it to be. Dialysis has removed toxins, increased my energy, and led to my revival, but it has taken me away from my daughter Petra. I don’t want the world to feel sorry for me. I know that dialysis doesn’t define me. It’s a step towards a more permanent solution. I am patient. Step by step. I know it is going to be good if I have a lot of determination and I have a lot of faith. Since I solved the problem of lack of energy and strength, I am focusing on working on myself. I have to do it, for me, for her, and for us. I will use my dialysis time wisely to learn and grow. Every day I will work on myself to learn something new and useful while waiting for a better life so that I don’t waste time. 

As I studied and researched, I learned that every year spent on dialysis decreases the chances of a successful transplant. I was also concerned that in Serbia, in 2021, there were only five cadaveric transplants while 2,000 people were on the waiting list. In 2022, the same horrible situation occurred again with only one transplant.

With other patients in the same situation, we created our Association Organ donation is heroism. First, our main activities were to raise public awareness regarding this horrible situation. We started with a petition that was signed by almost 13.000 people. Our main request was a coordinated approach to transplants, and that donation coordinators use every possibility when medical conditions are met to ask families for approval for donating. Afterward, we sent an open letter to the President of State, the Prime Minister, and the Ministry of Health. In addition, we had a small performance in front of our Presidency, where we washed our hands as the system does with us and transplantations. 

In addition to raising awareness of transplantation issues, we did a larger campaign to thank all the families who said yes to donating. We displayed a memorial plaque and planted a tree at the Donor Park in Belgrade.

Unfortunately, the situation in Serbia remains difficult, and only small steps were taken after the meeting with the Ministry of Health. 

Finally, the living donor kidney transplants started again. They had been on hold for two years, and many patients came through the Foundation to collect money for this operation which had been performed in Serbia for about 50 years.

Our fight will never stop because our aim is a better life and health for everyone.

We don’t want anyone else to end up on a waiting list, having to endure the same agony as we have to now.

In addition to the terrible healthcare system, we have circumstances that we call “patient spinners”. They are people who were themselves patients in the same situation and who are now speaking out publicly to say that there are no problems and that transplants are not conducted because of COVID-19. In the name of personal interests, problems are not called by their right name, which makes the fight much more difficult.

I try to live one day at a time, still successfully juggling between my daughter, dialysis every other day for 5 hours, and working full time. Dialysis takes its toll after two years as the energy is getting less and less.

I keep my fingers crossed that everything will solve for the best and that our country starts transplants again. In the meantime, we are raising awareness about the importance of the prevention of kidney disease.

To learn more about Ivana’s fight, motivation, and life on dialysis in Serbia you can watch this documentary: