I was 16 years old when I found out I had only one functional kidney and my mother's genetic disorder to boot. The same genetic disorder that had caused her own kidneys to fail at the age of 37, she had began her period and it just never stopped. Anemia followed and in the end it simply put too much strain on her body and her kidneys failed.
Doctors were only able to stop the bleeding by removing her womb. Of course, my mother had two functional kidneys her whole life and here I was at 16 with only one. In fights with my mother over what it meant for my health I would often argue that I didn't bleed every month, so there was less strain on my body, and therefore my own kidney health would be better than hers had been.
I could not have been more wrong. Four weeks ago my blood test results came back with some rather disappointing news: my creatinine (a breakdown product in muscles that is filtered out of the blood by the kidney and is used to denote kidney function) was up to 3.0 from 2.2 just 6 months prior and my globular filtration rate (the overall estimated percentage kidney function) had gone down from 34% to 24%.
My disease was progressing more quickly than I had anticipated in my youth or even a year ago, my kidney function had been stable for about a year and a half, which I attributed to all the exercise, drugs, supplements, renal diet, and "kidney healthy habits" I had been doing. All of that has seemed to stop working, my disease is getting worse, and I don't know why.
What is so strange about chronic kidney disease is that there are very few symptoms until things become really bad. It is quite easy to be in a state of denial about the whole thing until the very last stage of the disease, and even then not till the latter part of that stage.
The only thing I experience that could be a symptom of my disease is frequent night cramps, but, for most people, that could be attributed to anything.
So, every defining metric that I have to determine the progress of my disease are numbers on a page every 3 months... Numbers on a page that denote if I've been eating too much salt, protein, potassium, or phosphorus. Numbers on a page that make me worry and fret over what they mean and how to make them better. Numbers on a page that determine which medications I take and how often. Numbers on a page that make me not buy that hamburger, but skip the meal altogether. Numbers on a page that control so much of my life, when it could all be some big joke.
I do not feel the effects of chronic kidney disease and so I have no way to be certain that I am actually sick. But I am sick, and getting worse, if the numbers are to be believed, and I am terrified of dialysis.
It's not death that scares me; after all, as Epicurus said: "No rational being can fear a thing it will not feel." No, I'm scared of slowly wasting away in a chair for the rest of my life for 4 hours a day, three times a week. I worry that dialysis will rob me of my most basic autonomy; self-determination. Will I be able to travel anymore? Live in Japan again? Go to Jeju?