Back in the Land of Limbo

Over the weekend, my sixteen-year-old son Garrett was hospitalized for a kidney biopsy. During a previous routine examination, we had learned that his kidneys were spilling trace amounts of protein. This is an early sign of renal disease, and the current strategy is to find it in its earliest stages to hopefully stave off major problems later on. In the past, children with juvenile diabetes either got kidney disease or didn’t, and nothing was done until the child began showing signs of serious illness. Now kids are routinely screened for these trace amounts of protein to get to the problem earlier in the game.

Is this really necessary?

When it was suggested that Garrett needed a biopsy, my first thought was that it was an unnecessary procedure. “We need to find out what is causing his kidneys distress,” the nephrologist (kidney specialist) explained.

I asked, “Well is there any doubt that his diabetes is the culprit?” After all, he’d had it since he was seven. Surely nine years of diabetes could cause the kidneys difficulty. That was common knowledge. “Do we really need to have a biopsy for this?”

“Sometimes we’re surprised by the results,” she said.

Hospital Hotel

So Garrett went in for his needle-renal biopsy over the weekend. The two of us set up camp for an overnight stay in the children’s hospital. We came equipped with his handheld video game, a portable DVD player, and the absolutely essential I-pod. I brought some books and my laptop. “Let’s just get this overwith,” I said. After the biopsy and his recovery from heavy sedation, we waited for some kind of news. Anything. A word. Our demeanor was fairly calm and unconcerned, but in the back of our minds loomed the realization that we were here to learn something. In the meantime we watched movies, talked, and ordered Garrett’s favorite foods.

An Unpleasant Surprise

Late Saturday morning, while Garrett ate his hospital lunch, the nephrologist strolled in. She explained that we wouldn’t know exactly what was going on until Monday (today) or Wednesday of next week, when all the lab tests were completed. However, from what they could tell so far there were two receptors in Garrett’s blood with a low reading. These particular elements in the blood, when manifesting at low levels indicated that he might have another disease… called lupus. “I’m highly suspicious of it,” the doctor said. “It’s high on my list.”

We were stunned. Lupus? But Garrett hadn’t been ill. And there was no history of lupus in our family–none whatsoever. Other than this trace of protein discovered in a routine exam, Garrett seemed outwardly as healthy as any typical boy his age. Now we were hearing that he might have a second incurable disease. Lupus, like diabetes, is caused by the body’s immune system being unable to differentiate between foreign invaders and itself. This confusion causes it to attack its own organs, causing inflammation and organ distress. Many people with lupus have an average lifespan. But the medications to suppress the immune system can cause a higher risk for numerous diseases including cancer. “I’ll call you at home as soon as I have all the results,” we were told.

After she left, Garrett said aloud, “Why does my body want to destroy itself?”

Waiting for Results

Now, home from the hospital, we find ourselves back in the land of limbo. I don’t like this place. Waiting for test results is torturous. I am struggling with feelings of anger (why does my sixteen-year-old son, who should be having the time of his life, have to deal with so many medical problems?) and worry. And every now and then, I slip into a strange void of denial. This cannot really be happening.

Last night Garrett saw me working on a blog and asked, “Are you going to write one about me… and how I might have lupus?” He hesitated to say the word.

“I’m writing something else right now. But would you care if I did?”

“I wouldn’t mind,” he said.

So here I am. Waiting. Writing. Wondering. I’ve been in this place before. It’s the station before getting on the train. Being on the train is better, I think. I hope it arrives soon, and yet, not too quickly.

Kristyn Crow is the author of this blog. Visit her website by clicking here. Some links on this blog may have been generated by outside sources are not necessarily endorsed by Kristyn Crow.

Related Articles:

Stuck In Between: When We Have to Wait for Answers

Star Gazing

Why Do Some Kids Get Juvenile Diabetes? And can we prevent it?

Leave a Reply