My name is Rossella Picillo, and I am 50 years old.
I was 33 when I found out I was suffering from end-stage kidney disease (ESKD).
Throughout my life, I had never suffered from any particular disease. I was a healthy child; I only had measles, my tonsils and appendix are still where they are supposed to be. I grew up in a healthy environment; I practiced sport every day and had great marks in school. I was, in other words, a totally normal child.
Four days after the fall of the Twin Towers, I fell too… From my comfortable chair, I suddenly found myself at the emergency at Molinette because of a cracking headache. After going through an accurate screening of every single part of my body, doctors told me that my creatinine was very high (13) and that my kidneys were so shrunk they were hard to see.
That day, September 14, 2001, my new life – what I call “survival” – started.
I am not going to bore you with details of my personal calvary. I am sure many people affected by kidney disease and on dialysis have gone through the same…
Instead, I would like to tell you a more personal story.
When you are diagnosed with ESKD, the life you had just been living until then simply ceases to exist. What you are faced with is the utter unknown, filled with great fear and little hope. You are a simple spectator of somebody else’s life, which in your eyes has entirely lost its meaning.
Suffering from ESKD and being attached to a machine your whole life is absolutely unacceptable. Accepting this new terrifying state took me one or two years and I finally managed only thanks to two very important people (on the picture attached).
The first one is Federica – 10 years younger than me, with a very complicated past. She had lost her mother when she was 6 months old; her father was very cold and distant. She was in the dialysis room, with big needles in her arms, crying and sucking her thumb. The first time I saw her, I was shocked: her marvelous beauty was strikingly clashing with the surroundings. Sufferance, pain, disease, are incompatible with beauty and youth, I thought.
At the same time, looking at her gave me strength. If she could endure dialysis, so could I.
The second is my doctor, Dr. Giorgina Barbara Piccoli, who to me has been a doctor, mother, and friend.
She explained everything to me, taking me through all the steps from dialysis to the details and consequences of my disease. She helped me swallow painful pills; I could not have done it without her. That’s why I think that patients affected by chronic diseases need doctors who are knowledgeable and human. It’s essential.
I believe being a doctor is a mission and, believe me, by now I am absolutely capable of distinguishing between a doctor “with a soul” and one who comes to work only to get paid at the end of the month.
Thanks to them, I never lost the desire to live nor my combativeness, optimism, and strength. I have always respected my disease like a life companion that sometimes kicks you but does not prevent you from surviving, even if sometimes it’s “her” to rule your life, imposing absolute rest. Otherwise, my desire to live and go back to a normal life always prevailed.
Throughout the years, I have had all the issues and problems that come with kidney disease. I have suffered from all pathologies and associated complications that inevitably hit you when an organ as important as kidneys fail. Nonetheless, I never gave up. I live by myself, I am an independent woman; I come and go from the hospital standing on my two feet. I never had any state assistance; I have always worked and been successful in my job. I also go to the gym at least 4 times a week where I do yoga and exercise with weights – it’s a huge sacrifice but it’s worthwhile and extremely important for me.
However, despite my proverbial tenacity and, although I never fell into depression and I never needed a single day of psychotherapy, I can honestly tell you that dialysis is horrible and utterly unacceptable, especially in the long run.
It’s horrible to have to survive, to have to forget the real and carefree meaning of life. It’s horrible to not be allowed to face life’s “normal” and “boring” problems like repaying the mortgage, make ends meet, etc.. It’s horrible to have to always think about nothing but disease and dialysis, to have to endure social discrimination because you are sick and to have to give up on normal food and to have to get used to a constant feeling of thirst. “Survival” is a life that revolves around dialysis, a life that becomes “non-life”. Dialysis enters your veins, your body, your brain and fills your life.
Transplant is the only solution that enables you to go back to a more or less normal life. I believe organ transplant should be made available as the only treatment.
Dialysis does not allow you to live, only to survive. Because dialysis is a prison, a punishment, and an unfair cage.
After many years, I think I don’t want to survive on dialysis anymore.