#1)IGA Diagnosis “Operation Head in the Sand”
September 18th, 2019
Walking the dog. The stars sit like a big cap over the sky. Heavy. They felt heavy. Heavy stars and mashed potatoe clouds scooped over the town. Lit up by orange lights. I’m in the dark field with my black dog. Orion creeping over the chalk escarpment that falls off Salisbury plain. Helicopters hover, starting like stars and flying under the clouds and over the town. The trees on the right are monsters. None of the light reaches them. Dark green shadows, waiting. Always waiting. Always waiting in the dark. I feel scared. Alive, letting everything in. There’s a noise. An animal crying in the dark. I think about the clinical white room and the doctor saying there was ‘nothing to worry about.” He sat there jolly, saying “most people live their whole lives without ever knowing they have IGA.” My kidney function feels like a battery losing charge. This was the day it had fallen from 90 to 70 percent. Nothing to worry about, aparently. But it was the start of something bad.
Getting the IGA diagnosis in the first place was a nightmare. Anyone with a rare disease can tell you how hard it is. How lonely it feels. The doctors have no idea what’s wrong with you, why you feel tired and have that pain in your back. They can’t explain the swollen ankles or the light headedness. “Do you take steroids?” One doctor asked me. I felt like punching him. I didn’t, and then he sent me to the urinary lunatics, where the nurse holds your hand and the mad scientist pierces a long metal needle the wrong way up your penis. She holds your hand while the madman goes to work. On the ceiling, the NHS interpretation of what calming plants look like peel and flick at the edges. And when it’s done they smile and you say thanks and waddle out serviced and hurt.
Better is the ultrasound doctor who inspects your testicles to rule out cancer, which you’re sure you have by now. A nice guy whose more into KY jelly and ball jokes than his torture device colleagues. Nothing wrong there either. So onto the next one. A lady doctor checks your prostate. You make a joke about ‘some people like this’ and get no laughs. Everything is nervous and blind and lonely. Then onto renal and the first biopsy. You lie there and they press a long needle into your back. You feel it bite off chunks of your kidney. Dull bites in the depths of your back. Then you get up and say thanks and wait all day in the same single bed you grew up in. As unsure about things as you were back then. Two days later I played football and pissed a kind of claret blood for a few days after. We lost 1-0.
In front of me the dog is chasing stones across the dark field.
I had to leave the house after the doctor called. “Egfr is down from 70 percent to 30 percent, I’m really sorry. We don’t tend to get very accurate results until you are below 50 percent, so try not to worry.” And so I didn’t.
After me and the dog got back I just got on with my life, head in the sand, waiting, always waiting in the dark.