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My Family's Journey
Born with retinal disease, his kidneys began to fail when he was in middle school. Now the only potential donor is his brother Eric.

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I was finally in my room, high on the 10th floor of the recovery building. Like a monstrous creation of Dr. Frankenstein, I had a central line in my neck, a tube in my belly, and a tube in a place that I would rather no doctor ever go near. An antibody called ATG was circulating through my veins. Powerful immunosuppressants were wreaking havoc on my white blood cells. The counter on the IV stand said that I needed 20 more minutes. The alarm would sound. One of the nurses would hurry to change the bag and I'd be on fluid for the rest of the night. Fluids in and fluids out. They'd measure it, empty it, measure it, and then I'd be left alone for a few hours.

I'd just received a kidney from my older brother. He was somewhere down the hall. The last time I saw him, I was on a gurney waiting to go into surgery. The doctors wheeled his gurney past mine. A quick high-five, a smile, a "see you when I wake up," and Eric was whisked away. I wasn't as frightened as I thought I would be. An hour with my father's ancient six-string on the couch before leaving home and I had felt ready. A slightly altered verse from the Bible kept echoing through my mind.

"Though I walk through the valley of the shadow of death, I shall fear no evil, for I am the baddest mother that walks the land." To this day I cannot remember how the actual verse ends.

I was nervous, but not frightened. That is until they wheeled me into that white sterile room, a peripheral IV in my arm pumping God only knows what into my body. They asked me to scoot myself on to the stainless steel table. The less-than-dignifying hospital gown and thin blanket were little comfort against the cold metal. That's when I felt scared for the first time. I gazed up at the blinding lights above as an enormous hand lowered a mask over my face.

"Is it too late to change my mind?" I asked.

What were the options? Dialysis? I had passed out when the doctors had explained that option. Dialysis had meant no more backpacking, no more rock climbing, no more feeling the icy winter wind on a knife-edge mountain ridge—essentially, no more life. There was no other option. My eyelids grew heavy. The lights went out. My journey began.

The journey actually began a long time ago. I was 9 when I was diagnosed with Retinitis Pigmentosa, a degenerative retinal disease that could one day make me blind. At 9, that had meant little more than "I see the world differently than other people." There was a study being conducted at the Massachusetts Eye and Ear Infirmary to determine whether vitamin A could be used to slow the loss of vision. Before I knew it, I was taking a single monstrous pill every morning. A "simple" blood test was required every three months to check for side effects. When you're 9, no test that involves a needle is "simple." Within a year, the blood tests revealed that my vitamin A level had soared far beyond normal. I was immediately taken off the medication, but the blood tests continued. There was hope that if my levels returned to normal, I could rejoin the study. My levels never did return to normal.

In eighth grade, I had yet another routine blood test. I walked from school at the end of the day to the local health clinic where my mother worked. She entered the order into her computer and I went through the all-too-familiar routine of clenching a fist and waiting for the sting of the needle. However, my mother had entered the less expensive full batch of tests that she would normally order, rather than the single test that Boston desired. We received a phone call the following day; something was wrong with my kidney levels. My mother had accidentally uncovered the next leg of our family's journey.

A day later, I was lying on a table with cold gel on my belly while an ultrasound looked deep inside me. The woman operating the machine marked one black spot after another on the map of my kidneys. Confusion and concern hung over the white-walled room like a looming thunderstorm while the ultrasound hummed rhythmically. What were all these marks? Had we discovered some kind of cancer brewing within my belly? I tried not to think about the movie "Aliens" as I listened to the machine.

That afternoon, we were told that I had a number of benign cysts on both of my kidneys. I wasn't sure what benign meant, but it seemed to be a relief to my parents. I was told that I had about 50 percent kidney function; I had renal insufficiency. Over the years, I came to understand that renal insufficiency roughly translates to, "Your kidneys don't work quite right, but no one knows why." One of the hospital's kidney specialists suggested a possible diagnosis; a rare syndrome that involved low vision, low kidney function and extra fingers or toes. I remember looking at my hand and counting.

"One, two, three, four, thumb."

The specialist had stared at my snowshoe-sized feet and claimed that there might be an extra bone hidden within their massive depths. The x-ray confirmed what my family had already known. Like my mother and my grandmother, I have gargantuan feet.

When my kidney disease was first discovered, I was told that I might need a kidney transplant some day. My parents and I gave that possibility little thought. If I did need a transplant, it would certainly happen when I was in my 40s or 50s. I hardly thought about kidney disease as the passing days turned into weeks. It affected me far less than my vision. By the end of high school I was almost legally blind. There had been slight changes in my kidney function, too, but that could be managed with minor adjustments to my diet. But in January 2007, slightly over a decade after my first ultrasound, blood tests revealed that my kidney function had fallen below 25 percent. It was time to start thinking about a transplant. It was time to start thinking about my options for the future.

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