I have end stage kidney disease. If it sounds scary to you that is completely appropriate because it is scary as hell. End stage kidney disease is a chronic condition and it’s turned my world upside down.
I was sitting in a conference room with a group of clients and one of them said: “Noelle, you need some rest. You look sick.” In her mind I was overworked. I had been busting my ass on this project and little did she know I was weeks away from an operating table where I would undergo emergency surgery.
Inside I was an emotional wreck. I knew I felt sick, but like a delusional functional drunk I didn’t want to affirm it. Anyhow, I couldn’t be sick because I was still outputting at my usual high level. Yea, it was infinitely harder to do so: fighting the uncontrollable fatigue; the desire to just stay in bed and screw my responsibilities. But here was a client, oblivious to my real problems, laying it out there like an unfiltered child. I was sick and I needed much more than rest.
A month or so before, I was at my regular hair salon getting a pedicure. My pedicurist said: “Your feet look swollen, Noelle”. I rebuked the thought, because I knew swelling was another symptom of the deteriorating condition. The worsening symptoms came one by one: extreme fatigue, swelling, loss of appetite, a persistent and unexplainable down and out feeling, drooling, tingling in my body, and then the one that tipped the scales for my doctors, vomiting.
I have a rare, untreatable kidney disease. How do I know? They cut a tiny piece of my kidney off during a biopsy and put it under a microscope. It revealed two shriveled up organs that were full of scar tissue. How did I get it? Well, I don’t have Lupus; I don’t take heroin; I don’t have HIV; I’m not massively obese. All of the known causes of this rare condition don’t apply to me. In other words, I have it because I know I have it. The rest of the story is unknown and untold.
The kidney is a vital organ. It’s little but powerful as hell. Doctors can monitor your levels of functionality, and when you drop below 15% functionality they diagnose you with end stage kidney disease. The natural progression after that is a quick road to death unless you find a replacement treatment (dialysis or transplant).
So when I started vomiting, it freaked me the hell out and I went to my doctor. Some time ago, my doctors told me dialysis would come, but I was running on beast mode and my kidneys were playing along so I deferred for when things got really critical.
That time came. Vomiting is a symptom of uremia. Believe Wikipedia when it says: “Without intervention via dialysis or kidney transplant, uremia due to renal failure will progress and cause stupor, coma and death.”
Uremia is basically blood poisoning due to the build of up toxins in your blood. Those are the same toxins you usually dispose of when you urinate, so uremia is like blood saturated with piss. Yes, I was on track to die in an indoor pool of my own piss.
So I asked the doctor, what is the risk of waiting (to start dialysis)? He said: “In three months you’ll probably be dead.” Your blood is toxic and you need to clean it now. I want you on the operating table in the next three days.
My mother was in the room with me. Picture that moment.
My doctor, he’s not a psychic; he’s not God; and to a certain degree, doctors don’t know shit, but boy did he hold the power to scare me shitless.
I’ll tell you all about it as I write my way through the trauma and healing. (Thanks to my sister Kerry for the encouragement to write).
I invite you to take this journey with me.