Guest Post By Mel Cornell
My younger brother was born with Autosomal Recessive Polycystic Kidney Disease (ARPKD). The doctors had assured my parents that it was unlikely he would survive the pregnancy, and once he was born it was clear that every minute was precious.
Though most of it’s a blur, I will never forget the constant visits to the hospital and the endless amount of needles. We were very lucky that he continued to fight the disease and as time went by my sick baby brother soon wasn’t a baby anymore.
As a young girl I didn’t know much about PKD, I knew my brother took an awful lot of medication, however he never actually seemed very sick. There were small indicators, like his potbelly caused by the huge kidneys in his tiny body, but even my childhood friends wouldn’t believe me when I told them how sick he really was. It was very clear that I couldn’t poke him and push him the way I often would have liked to as a bossy older sister. His tender kidneys meant no fighting, so instead I worked out I could bite him on the arm, which to me was a better alternative anyway! By the time we reached primary school we knew the rules, but even a fall in the playground meant a trip by ambulance to the emergency room.
As he continued to get older, we knew the inevitable need for a transplant would be growing closer and closer, but somehow it continued to be postponed. His test results seemed to still be declining, but slower and much more steadily than anticipated and he was passing all the medical expectations and milestones that had been set, such as his 10th, 12th, 16th, 18th birthday.
By the time I had finished school and started university I was much more curious. I wanted to know all the details, everything that happened in the beginning that I was too young to process. I felt at this point that I had the strength to try and understand the enormity of what someone with PKD goes through.
My mum produced some letters that she had written while she was pregnant with him and it was only then that I began to fully comprehend what it must have been like for them as parents. I started attending his appointments with the rest of the family and began to learn much more about the specifics; the importance of Creatinine, Vitamin D, blood pressure and many, many more levels. The graphs the specialist shows us seem impossible to understand, but as long as the line on those graphs is moving at a steady rate I know it’s good news.
He is currently studying Engineering at university and we celebrated his 21st birthday last year. As I write this he is on his first independent trip to Europe with some friends.
I don’t know what the future holds, or how soon that inevitable transplant may be, but all I can hope for is that he will stay happy and healthy for as long as he can. As an older sister who once was only concerned with pushing him around, all I care about now is that he is living a life that he loves surrounded by people that love him in return.
