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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.

By Michael Lang '06

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.

My mother immediately volunteered to be my donor. There was no question in her mind. Children are always a partial match with their parents. It seemed to be the best solution. While my mother began a rigorous series of tests, I went on with my life as though nothing was wrong. After all, I didn't feel sick. Had it not been for the blood tests, I wouldn't have even known that anything was wrong. I don't remember being worried. I knew that everything would work out in the end. Either my mother would be the donor, my name would come up on the donor list, or—or I would start dialysis. That word still makes my skin shiver and crawl. For many, dialysis is the only option. It's a welcome escape from the nightmare of kidney failure. For me, however, dialysis would never be an acceptable solution.

While my mother continued to take one test after another, I went to Minnesota to work as a wilderness guide. I had just graduated from UNH with a degree in outdoor education and was off to explore the world. I was away for nearly four months, leading canoe and kayak trips for people of all ages and all abilities. Other than a single blood test at the University of Minnesota Health Center and trying to adhere to a special diet, I hardly had thought about my kidney disease. However, my journey had already started to affect me.

It sounded like a simple question. I answered Peter without pausing to think. "You mean besides life?"

"If anyone other than you said that, Pirate, I would call 'bullshit,'" Peter said, laughing.

We sat together for a long time while I explained the philosophy that I had adopted while guiding on the trail. Everything is an opportunity; even the worst trials and obstacles. We would be paddling more than 15 miles the next day with heavily loaded boats, but we were lucky to have that opportunity. We were all lucky to have the chance to see whether or not we could do what seemed daunting or impossible.

Our small group slept out on the rocks that night, our array of sleeping bags like a giant patchwork quilt of blue, grey and red. I awoke the next morning with a crow inches from my head. He looked down at me and I looked up at him. With a raspy caw, he spread his wings and flew over me. I thought little about that moment until days later when I was flipping through a book about the spiritual symbolism of animal spirits at the Minneapolis Public Library.

crow: Seeing past, present, and future together; look with the innocence of a child; feel with the instinct of a mother; see with the eyes of an elder; working in darkness without fear; carrier of souls from darkness to light.

I wouldn't know it until I went home weeks later, but my mother had failed one of the final tests. The doctors would not allow her to donate a kidney. She had failed a glucose tolerance test and there was a chance that she could develop diabetes with only one kidney. The doctors refused to even consider my father because of his cardiac stent. Our journey had come to a sudden halt. There was talk of dialysis. My stomach felt queasy at even the thought of that option. In the midst of the confusion, Eric suddenly called from his home in California.

"Hey, Mike, I just had my blood type tested. We're a match."

"That's great," I replied. I felt like an idiot. I didn't know what to say. How do you say "Thank you" to someone who's just offered to donate you their kidney? What words can express such overwhelming emotions? "Thank you" just didn't seem like enough.

"I'm going to do these other tests and see what happens."

I still didn't know what to say. "OK." My mind drifts momentarily back to the crow that I had awoken to on Kabetogama Lake. Had it been a sign of something good approaching on the horizon?

The days slowly trickled past while we waited for the test results. At last we got the call. Eric and I were a partial match. He checked his busy schedule at work and a date was set. He sent me a package the following week. It was my 25th birthday. Inside the small heavy box was a card.

"At your age, you can't afford spare parts," the card read.

There was a large can of kidney beans within the box.

"But I've got a few that you can borrow," the inside of the card read.

Due to my restricted diet, I couldn't eat Eric's gift. Instead, it went on a shelf beside my fleecy stuffed animal crow. The darkness of disappointment had turned into the light of hope. We had a plan, and the journey could now continue.

October passed like a swirling breeze of autumn leaves. The big day was lumbering closer and closer. Two days before our surgery, Eric and I went for a hike up North Moat Mountain. For nine miles we slogged through mud and crunched across ice. We returned home that night tired, filthy and smiling. Was this a taste of what was to come? Every challenge is an opportunity, even the worst trials and obstacles. I had the opportunity to go on a life-changing journey. I also had a family that was willing to go on that journey with me.

I awoke from surgery in the recovery room. I don't remember much about the recovery room. There was a thing in my neck, the central line. I could feel tubes against my skin and quietly hoped that they weren't connected to me. The nurse drawing my blood from one of the central line's colorful ports smiled at me. There was a thing in my arm. It was called a peripheral IV, but it was a thing; another tube providing access to my innards. I answered her questions with a smile. I heard myself speaking in a cheerful tone as though there was no place I'd rather be than right there. The truth was that I could think of almost a million places I would have rather been, but most people who are sick or in pain forget about everyone else. Doctors and nurses deal with a lot of anger, frustration, fear and despair. I had resolved long before my surgery I'd try to always smile and always say "Thank you." I would be the silver lining to their hectic day of tending countless patients. Another nurse entered my dominion of blue curtains and beeping machines. She was young, my age, blonde, with a charming smile. Perhaps there is a silver lining to every dark cloud.

I remember my entire family being there in those first hours. My oldest brother Jeff and his wife, Jaime, my mother and father, even two of my mother's close friends (my other mothers) were there that day. Eric's girlfriend, Kristy, was there. Eric was fine, cranky, but all right. I was laughing. We were telling jokes, making a scene and probably embarrassing my mother. The world was suddenly moving. The beeping of my machines was getting fainter. I glanced around in a momentary panic. No dark tunnel, no bright light ahead; I thought, I'm good. A room had opened on the transplant floor. We were headed upstairs, headed to the 10th floor.

A nurse guided my bed, another pushed the IV stand and its heavy load of colorful fluid bags. Like an emperor being carried to his palace on a sedan chair, I was wheeled through hallways. The elevator doors closed and we rose towards the dark evening skies of Boston. I was brought into my new room and it was time to get settled for the night—as if that's possible in a hospital. There was a Code Blue next door. I wished I didn't know what that meant, but I was a Wilderness EMT for four years. I knew that someone next door was being sped away to the intensive care unit. My parents would be returning in the morning. It was Tuesday night. I would be there until Saturday, Friday if I was lucky. It was time to get settled for the night, time to rest.

It was and is my firm belief that it is not humanly possible to actually relax or sleep while in a hospital. Those who say otherwise are either mutants or have completely abandoned their sense of reason. I became accustomed to this fact during my first night on the 10th floor. I also learned that it is even less possible for someone like me to sleep in a hospital—someone who can hear a mouse fart from a hundred yards away. A hospital is a menagerie of nocturnal noises; patients coughing, papers rustling at the nurse's station, a siren 10 stories below, the IV alarm. My fluids needed changing again. The alarm would wail until the nurse arrived. A new bag would be hung on the stand, my urine bag would be emptied and measured. She would want to check my temperature; it would be low again. I'd then have a few meager hours of what could be called peace. Not tonight, though. A dazzling blue light flashed in the hallway, accompanied by a siren. A woman's calm and reassuring voice sang out in a cheerful tone.

"A fire has been reported in the building; please proceed to the nearest exit in a calm and orderly fashion."

"Seriously?" I heard myself groan. Sitting up in bed, I momentarily considered the calm fashion in which I would descend the stairs—with an IV stand and urine bag in tow. It was a 10-story descent through the concrete tree tops to the pavement below. I lay back and got comfortable. At least I would die with good kidney function. It was Tuesday night, and I would be there until Saturday.

Morning came much earlier than I would have liked. I was greeted by the director of the floor and her gaggle of ducklings. Many of the beaming faces seemed to still be growing into their white lab coats and blue-lobed stethoscopes. They watched her with wide eyes and attentive ears as she examined my belly. She adjusted the adhesive bandage. I heard it, felt it, and knew that there was nothing I could do to stop it. I bit my tongue as she ripped the bandage away. The ducklings leaned closer while their mother fiddled with the tube protruding from my belly. A layer of slimy goop had hardened around my incision, fluids that escaped from within me overnight. The human body is truly a vile thing. I heard the doctor mutter something about the incision looking good.

"What planet are you on, woman?" I thought. "It's covered in goo!"

The floor director and her ducklings left to inspect the next patient. I managed to hold back a heartfelt "quack" as they departed. It was now time for the 6:00 a.m. drugs and blood. I swallowed the colorful tablets, struggling to remember names, shapes and dosages. The nurse attached a vial to the thing in my neck and it slowly filled with thick red liquid. I supposed I could let her have a little. The record before surgery was 20 vials. Today, she only demanded four. She told me that my creatinine level was down to 1.7. That was good, lower than it had been in more than 12 years. My kidney function was almost normal. The nurses asked me what I wanted for breakfast. I was not accustomed to options. For the past few months I'd been on a restricted diet to keep my kidneys happy. Rice Krispies had been my breakfast every morning. Snap, Crackle, Pop and I had become good friends. Keeping to a diet of low protein and low potassium left little more than rice and vegetables for my meals. The type on the list of options was too small for me to read. Rather than explain that I was legally blind and couldn't read the list, I pointed at the middle of the page with a smile.

"I'll have this."

I heard her mumble something about oatmeal as she took the list and circled my choice. Oatmeal! Dear God! What did I do?! I added the rough location of oatmeal on the breakfast options to my list of things to remember, filing it under "A" for "Avoid at all costs." It could have been worse, though. There had been a mistake with Eric's chart. It claimed that he needed assistance eating. While the nurses hurried about their morning rounds, Eric's breakfast sat unguarded and ignored, growing colder with every passing minute. He later complained that someone ate his sausage.

Eric came to visit after breakfast. He, my oldest brother, Jeff, and I sat around the hospital room's small table playing cards as though we had gathered at the local pub after work. My IV stand was at my side, faithfully pumping its contents into my veins. Fluids poured in and fluids poured out. I hoped that I would remember how to pee when this was all over. A nurse entered the room, smiling like a bar waitress as she delivered a pink plastic pitcher of water. We asked for beer, but our request was met by a disapproving smile. I could almost hear Queen Victoria's voice in the nurse's laugh: "We are not amused."

Tired of cards, I went for another walk. My mother insisted on checking the tube in my belly before I left the room. A small eddy had formed in the clear plastic's trickling stream of ooze and fluid. A thick glob of tissue was stuck, lying limply across the opening of the tube. Terrified that pressure might build within my tender belly, my mother, the ever-worried nurse, began to "milk" the flexible plastic. She tugged. She squeezed. She shook and pulled.

"Mom! That's attached!"

Finally, the dam of dead tissue tumbled away, and the stream continued its slow trickling pace. I prayed that the doctor would remove my tubes before I went home. Gripping the cold metal of my IV stand, I stepped toward the hallway. Walking past the nurse's station, my urine bag in one hand and the IV stand at my side, I turned the corner and began the 10th floor loop. The hospital hallway, with its bright ceiling lights, hardly compared to the crisp autumn sun and muddy trail of North Moat Mountain. My parents and my aunt had bought me books on tape for the hospital stay: Prairie Home Companion, Into The Wild and other titles. The truth was that I'd rather be out walking with my feet than reading with my ears. Even the concrete forest and overcast skies of Boston would be better than the drab walls, sterile smells and beeping machines of the 10th floor.

I passed an open door and saw a doctor in his white coat standing by a patient's bed. There were other people gathered around the moaning woman's blanket-covered form as well. I kept walking, but my mind remained behind, listening to the doctor's voice.

"You just need to find the energy to get out of bed today."

The woman moaned in a weary voice.

My mind drifted back to last night; the neighbor being whisked away to intensive care, my roommate lying alone with no one to keep him company. And then my mind drifted back further to that September day—the day that Eric called. Why had we been a match? Why was I so lucky? Why was I walking the day after surgery while others were too weak or miserable to rise from bed? I had a brother willing to take this journey with me, but not everyone is that lucky. I thought about the tens of thousands with their names on organ lists, waiting, hoping.

Time blurred into a daily routine of medical school ducklings, meals and meandering walks through the hospital's brightly lit hallways. The nocturnal noises of the 10th floor filled my ears every night while I struggled to sleep. Suddenly it was Friday. I would be going home tomorrow. Another doctor came into my room after breakfast. He was one more unfamiliar face with a white lab coat. The trickling stream of attending doctors, nurses, and orderlies had grown to a raging sea. My father and I both greeted the newest stranger with welcoming smiles.

"Mr. Lang," he said. I couldn't place his accent. Maybe he was Russian, or maybe he was from an obscure corner of Europe. "How are you today?"

"I'm doing great!" The central line and catheter had both been removed the previous day. The world was a beautiful place. Other than the tube in my belly, I felt human.

He carefully inspected my incision, checking for any signs of infection or other complications. "What did you do before your surgery?" he asked.

"I was a wilderness guide," I explained. "I climb mountains and lead canoe trips."

"I knew you were a climber!" he exclaimed. "What do you climb?"

"Difficulty? I climb 5.9 and 5.10, but I lead 5.7."

"I climb 5.9 too," he replied with a grin. "You should come out to Utah. Best climbing in the world! I'll show you around the canyons!"

He finished his examination and said good bye. After he left, my father gave me a look of disbelief. "How could he have known that you were a climber?"

I smiled in response and silently wondered how many transplant recipients go rock climbing with their doctors after surgery. I would probably be one of the few. The stereotypical climber is not exactly medical school material. For a brief moment, I tried to imagine the clean-cut professional clinging to the crux of a 5.9 with his soft surgeon hands. The image made me laugh. Climbing and medical school are an unlikely pair.

While I lay in bed that night, I found myself thinking about a story I heard as a child. A story about an old man walking a beach. Thousands of starfish adrift in the sand, stranded by a terrible storm. The old man stops as he walks, plucking the helpless starfish from the sand and flinging them back to the water. A younger man comes upon the old man and watches him in disbelief.

"What do you think you're doing, old man?" he demands. "You can't possibly save them all. What does it matter?"

The old man simply smiles and looks at the little starfish in his hands.

"It matters to this one."

Far below in the depths of the city, car horns shouted and sirens screamed. A little starfish on the 10th floor of the Beth Israel Deaconess Medical Center closed his eyes for the night. He'd be flung back to the safety of the sea tomorrow; back to his family, back to his home. Another night crept past. I'd almost become accustomed to the nocturnal noises. I found that to be frightening. Saturday finally dawned and I began the long painful wait for my discharge papers. The clock hands moved as though they were made of cold molasses. It seemed like I might never leave the 10th floor. At last the doctors were satisfied. I signed my name and was free to go.

I came home from the hospital a week before Thanksgiving. That holiday means a lot more to me now than it did in the past. It's more than just pilgrims and natives learning to be friends and more than grandma's apple pie. It's the opportunity for me to say "Thank you" to my family. Eric and I were the stars of the show, but everyone else came on this journey, too. I can't imagine what it must be like for those who face kidney disease alone. I can't imagine what it's like to be on dialysis. As my journey continues, those are two opportunities I hope never to have.

It's been more than two years since that November, and I still have not found a way to truly say "Thank you" to Eric and the rest of my family. What do you say to someone who's given you a kidney? What do you say to someone who's traveled far to be with you during a difficult moment? Thanks to a generous brother and a skilled surgeon, my life has returned to normal. A scar on my belly and a handful of pills, morning and night, are my keepsakes from this adventure; as well as an unopened can of kidney beans that sits beside a crow on my bookshelf. I still don't know how to say "Thank you" and I doubt that I will ever find the words. "Thanks" will never be enough. ~

Michael Lang '06 graduated from UNH in December 2006 with a bachelor of science degree in outdoor education. He spent two summers working as a wilderness guide before receiving his transplant and now lives in Durham. He is a challenge course facilitator at the Browne Center for Innovative Learning and also works part time at Jackson Lab and the UNH Department of Audio/Visual Services.


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