Feeling all pains and needles

The Sick Days: Part 22

After toughing out the chronic pain of inflamed joints and fever flashes, a young reporter hits the wall and lands in the hospital where hiding the truth about her illness is no longer an option

By Shelley Page

An ‘X’ was drawn on my back to mark the spot where the biopsy needle was to be plunged. That’s when the nephrologist executed the bait and switch.

“Ok, how about you do it?”

“The biopsy? Me?”

Hovering over me — face down, backside up— the attending nephrologist discussed the procedure with the resident, who’d been at his side since I met them the previous afternoon. (It was a teaching hospital).

“Yes, you’ve watched enough of these. You’re ready.”

“It’s a straight shot?”

“More or less.”

One of them touched my shoulder. “How are you feeling?”

Uh.

I lifted my head, twisted my neck to look them both in the eyes. I’d read somewhere that you’re supposed to make eye contact with specialists so they see you as a person instead of a procedure.

The evening before, when they’d come to my hospital room, the senior doctor made me comfortable by dangling his own experience, accomplishments and bona fide nephrologist’s credentials in front of me. Then suddenly, in the procedure room, he put the beginner doctor in the starting lineup even though he’d never swung a biopsy needle.

“This is going to be my first biopsy!” he said to me, with excitement.

“Mine, too,” I responded, with dread.

They were going to take a snack-sized bite of my innards: a moment of truth in the course of my chronic illness.

Until then, I’d only been able to divine the inner turmoil when it showed up as heat, swelling or pain in my joints, or around my lungs and heart. With a piece of my insides, they could study exactly what my disease looked like, at least as it pertained to my kidneys.

Those with cancer likely worry that their cells are misshapen and defective; I was afraid mine looked charred, as if too long on the barbeque.

In lupus, about 60 per cent of sufferers have kidney involvement, usually lupus nephritis, which is when tiny filters called the glomeruli become inflamed or damaged. When this happens, the kidneys can’t clean the blood properly and the protein and red blood cells that normally circulate in the bloodstream are abnormally passed into the urine.

One in five cases of lupus nephritis is severe, based on biopsy results. These patients are diagnosed with Class IV diffuse and proliferative lupus nephritis; the glomeruli are so hobbled by inflammation that it can lead to kidney failure.

The results of a biopsy help determine what sort of treatment is needed. Without a biopsy, it’s not straightforward to diagnose severe kidney inflammation. Fatigue may or may not be present. Same with sore joints or a rash. Often, your urine looks frothy.

Every time I looked in the toilet, my urine looked like soapy bubbles in a sink full of dirty dishes. I also had fatigue, sore joints, a constant rash.

Until then, I’d only been able to divine the inner turmoil when it showed up as heat, swelling or pain in my joints, or around my lungs and heart. With a piece of my insides, they could study exactly what my disease looked like, at least as it pertained to my kidneys.

Bad Ops

The smell of antiseptic. Stinging cold. The junior doctor cleaned the ‘X’ over my kidney. Then, they injected light freezing. I already had an IV in my arm; earlier that morning I gave a blood and urine sample.

“Take a deep breath and hold it. It’s very important to hold it.” The scarring around my lungs from a previous bout of pleurisy held my ribs tight like a corset. I couldn’t breath deeply. Then I felt a pinch and some pressure.

“Got it.”

“Not so fast.”

From what I could tell, the resident and the doctor were examining the tissue at the tip of the biopsy needle.

“I think you missed.”

“I missed?”

“It can happen.”

Someone had a finger over the unnecessary hole in my back, adding pressure to stop the bleeding.

He missed the ‘X’ or the ‘X’ was in the wrong spot?

“You didn’t breathe deeply enough.”

“Sorry?”

“You need to breathe really deeply, hold it.”

“I have scarring around my lungs, I can’t breathe deeply.”

“So we do it again.”

“But I already went in from the ‘X.’

“Go in slightly to the left.”

“OK!”

That was the resident speaking. I had to interject.

“This is all very educational, but could I have the actual nephrologist stab me in the back?”

Resident and doctor looked at each other, then at me.

“I insist.”

I imagined the resident standing sheepishly beside his mentor, as he expertly plunged the biopsy needle in again. I felt another prick, then pressure. Now I had two holes in my back; two windows into my inflammed innards.

The results would be available later that day or the next.

Booya

I lay in bed, trying to visualize the soldiers of inflammation marching from my body. I still believed that if I focused hard enough, imagined intensely enough, I could think my disease into remission and wouldn’t need buckets full of prednisone.

For two days, I hadn’t had prednisone. They’d not given me my regular meds since I’d checked in. I hadn’t gone that long without the drug since I’d been diagnosed with lupus seven years earlier. Never have since, either. Not for 30 years. No one seemed too concerned, expecting my meds would be changed once the biopsy results were in. I kept nodding off without the boost of fake cortisol.

The month before, I’d met with a psychiatrist who was a sleep specialist at the Royal Ottawa Hospital. I’d not been sleeping for many months; it seemed to coincide with the incessant face flushing that occurred when I was at work. And a drug dealer and his prostitute girlfriend had moved into the basement below our nice, expensive apartment in Ottawa. She’d stomp in at 6 a.m. and he’d count the proceeds from a night’s work.

The psychiatrist asked me why I wasn’t sleeping and I’d told him sometimes I was too worried to relax.

“What are you worried about?”

“Aside from the rival drug dealers breaking into the apartment underneath me to search the cereal boxes and dirt in the plants for drugs (that really happened), I’m worried about what’s going to happen to me because of my lupus. I’m worried about how my life is going to be limited.”

“Why do you say ‘my’ lupus? Why do you need your illness? Why are you so possessive of it?”

“I say ‘my’ lupus because no two cases are exactly alike. That doesn’t mean I want to own it.”

He was indifferent. “I don’t see what you have to worry about. As long as it’s not in your kidneys, it’s not really a big deal.”

Only someone who doesn’t live with chronic pain and chronic fatigue would say it’s not a big deal. Still I felt relieved then that I didn’t have kidney lupus. From my hospital bed, I wanted to call him back and demand to be taken more seriously. (He’d already ordered a 24-hour sleep test that found I had abnormal brain waves about 20 minutes after falling asleep. He suggested sleeping pills.)

As I was lying there with my eyes closed hoping for sleep, the door burst open and I could hear panting. I wondered if the hospital had a therapy dog? But it was the resident who had performed the biopsy. He was out of breath.

“I ran up five flights,” he said, almost gleeful. “I have your results.”

It had to be good news then. I was going to be OK.

He looked around, leaned in. “I shouldn’t tell you this without the attending here, but you’re Class IV.”

“Class IV. What’s that?”

“You have the worse kind of lupus nephritis. It means the inflammation is diffuse and proliferative.”

He was giddy from the excitement of delivering his first biopsy results. Booya.

This time I had a lot of questions.

“This couldn’t have happened overnight. How long have my kidneys been inflammed? Could we have caught it sooner? Can we stop it?”

Providing the answers, if not the actual biopsy, were above his paygrade. He said the nephrologist would be up soon to share the options with me.”

The worst kind of lupus nephritis seemed, well, not good. He slipped out and told me to get some rest.

I reached for the phone to call my parents in Coquitlam, but the door banged open again. I thought it might be the nephrologist, but it was three of my girlfriends from work, a photographer and two writers, and coming in behind, two guys I worked with. They were all eyeing at me like I was a piece of discounted halibut in a fish store. Then, they held out a huge card that people from the newsroom had signed.

People knew I was in the hospital. They bought a card. And hand delivered it. Over the coming days, my room was filled with colleagues and friends. So this is what happens when you tell people you’re sick. My face turned red, this time because I was embarrassed.

Wanita, a photographer friend in a white polka dot tutu, snapped photos. We joked around, posed for photos, didn’t talk about why I was in there. I will never forget what happened next. As I was sitting there, I got a shimmering hole in my vision that with each passing minute got bigger, until I couldn’t see anything without looking through a jagged, wiggly screen. Even with my eyes closed, a lightning storm was going off in my field of vision. It was terrifying. I quietly lay back down on my bed.

“Guys, I’m really tired. Thanks for coming but you gotta go.”

When my friends trooped out of the room, I pulled the thin flannel hospital issue blanket over my head and started to cry. What if I had a brain lupus? It was much too much.

People knew I was in the hospital. They bought a card. And hand delivered it. Over the coming days, my room was filled with colleagues and friends. So this is what happens when you tell people you’re sick. My face turned red, this time because I was embarrassed.

Doctor’s orders

The nephrologist, rheumatologist and resident visited later that afternoon. The visual disturbances had subsided. They thought I might have had a TIA or mini stroke and ordered an emergency MRI for the following day. Then they turned to the matter at hand. I didn’t bother trying to look surprised when the kidney doctor told me I had Class IV diffuse proliferative lupus nephritis.

He handed me a sheet of paper that described the classes of nephritis, from minimal mesangial to membranous. The type I had was the only one where kidney failure is “common.” They actually used the word “common.”

I was very sick. They planned to immediately put me on intravenous corticosteroids while I was in the hospital to get a jump on the inflammation, and add in the immune suppressant.

They planned to immediately put me on intravenous corticosteroids while I was in the hospital to get a jump on the inflammation, and add in the immune suppressant azathioprine, originally a cancer drug. They hoped it would knock me into remission and save my kidneys.

(Just a year later, intravenous cyclophosphamide with corticosteroids became a more favoured treatment for Class IV, even though it was linked to ovarian failure, immune problems and hair loss. But that time, that wasn’t the treatment I was offered.)

I had no concept of what “very sick” meant.

“When do I go back to work?”

“Maybe a couple of months.”

That seemed like a very long time. I worried what the City Editor would say or if he’d already heard I’d had a kidney biopsy.

After the doctors left, I yanked the hospital phone off the table and set it on my lap. I dialled the newsroom.

I had no clue what medical information you were supposed to divulge to your employer. Where does an ailing 26-year-old find out these things? In retrospect, I could have just said I was sick and needed a few weeks off and provided a vague doctor’s note. Instead, through more tears, I told him everything.

“I’m so sorry to have to tell you this. But I’m really sick.

“I have lupus. I’ve had lupus my entire working life. And now it’s in my kidneys. It’s attacking my kidneys. I bet it’s been doing that for a really long time, and they only looked now. I don’t know why they didn’t look sooner. But now I have to deal with it.

“It’s really serious. And I can’t work for two months until the drugs start to work. The drugs make me kinda crazy.

“I’m so sorry.

“But I’m going to be fine. I will be fine.”

There. I’d said what needed to be said. My illness was no longer a secret. If there were consequences, I’d have to live with them. But first, I had to get better.