I had my first brush with illness at the young age of twelve, followed by another at twenty-one, in the early nineties (in a war ridden country), when I first started dialysis. As a young woman, in conditions which were very far from ideal (the only thing that wasn’t lacking at the hospital in Novi Sad was good will), and I handled dialysis with many difficulties, both physical and mental. My parents handled my long-lasting disease with relative success. I recall that, every time we went home after a treatment I had to smile, because they were worried whether or not I felt alright. That, in and of itself, was very strenuous but necessary. My sister once told me: “You have to understand them, their child is ill”. It felt as if I couldn’t complain, had no one to tell of my hardships.
After the tests in Belgrade (transplantations weren’t performed in Novi Sad at the time), it was established that my mother and father matched me as donors. That is incredibly rare, and amazingly fortunate. My father was a better donor, because my mother suffered a kidney disease in her youth as well, and dad’s kidney function was better. I remember them discussing who the donor will be over lunch. As generous as it was, I found it scary. I hated it, I even went as far as to say that I didn’t want a transplantation, and neither of them to be the donor. They were completely blindsided. The mere fact that I was in uncharted territory with an indefinite outcome, and that I am causing someone I love, someone rosy cheeked and unimpaired, trouble, terrified me.
My sister, three years my elder, and a young doctor at that, was amazingly supportive when I was on dialysis. When I had to go in for my first treatment, she paced the building with me one more time, for me to feel safer, just another lap… until I finally found the strength to go inside and “plug in”. If you are aware of the fact that, from that moment on, your life will be completely flipped on its head, having someone calm, cool, and collected, to be your peace, to be quiet when you need them to, and talk when you even you didn’t know you wanted them to, is crucial…
My family was there for me when we went to Belgrade for the transplant. All four of us, in the same car, pale and scared senseless, yet pretending to be brave, to be strong for one another. To make matters worse, our car broke down on the freeway! I remember it vividly, everyone was casually chit-chatting with one another, about everything and nothing. Only one thing was on my mind, however; whether or not I will be put to sleep before I enter the operating room. I didn’t think about the outcome for one second. The outcome was certain, the outcome was positive. The transplantation is why we are going to Belgrade, and after the operation my life will go one. That was how I handled it. I didn’t want to read about it, or hear any information regarding the transplantation. There was no information on the internet back then, and even if there was, I wouldn’t have read about it. I have a principle of being uninformed about possible outcomes and complications (what I don’t know can’t scare me, right?). Perhaps that isn’t the best approach, but for me it proved effective. Even then, my sister was by my side. She had traveled from her specialization in Hungary, just to be with me, to chat for hours, to hold my hand, and shower me with the love and attention I didn’t know I needed, even making me laugh. She was with me till the very end, until I went to sleep, thanks to the medication, in my hospital room. Then, early in the morning, asleep, they took me to the operating room. My wish came true.
Family is everything, when you suffer from chronic disease. Whether it be parents, a significant other, children or cousins, the most important thing is to feel loved, dignified, and important. Support and faith are immensely important for the mental stability of a dialysis patient, and a positive outcome of a transplantation.
I’ve always had them, and continue to.