Iowa Alumni Magazine | April 2008 | People

On the Move for a Cure: Jenna Smith

By Shelbi Thomas
UI engineering senior Jenna Smith offers her take on living with a rare kidney disease.

A few days before Mardi Gras, my friends and I packed the car for an ultimate Frisbee tournament in New Orleans. Between all of the uniforms, cleats, and Frisbees in the backseat, I stuffed some extra equipment-my 50-pound dialysis machine.

When I was seven, I was diagnosed with Dense Deposit Disease, a rare autoimmune illness that leads to kidney failure. My dad gave me one of his kidneys when I was 14. His gift meant so much, but after a year-and-a-half, my body rejected it. Although I can try another transplant, chances are it won't last. Until scientists find a cure for DDD, I have to dialyze three hours a day, six days a week. I stick two needles into a surgically implanted "access point" in my forearm. The needles connect to the dialysis machine, which removes the waste from my blood through reverse osmosis.

I dialyze in the afternoon between my engineering and art classes. It's uncomfortable and tiring, so I usually fall asleep halfway through the procedure. Before I learned how to do dialysis at home, I had to go to the hospital three times a week and sit in a room with about 20 other kidney patients. Even at home, dialysis can be frustrating, because it never ends. I try not to dwell on the negative, though.

I don't want my health condition to stop me from doing what I love, so I take a full course load, play intramural sports, and co-lead the Concrete Canoe Team of the UI chapter of the American Society of Civil Engineers. This past summer, I volunteered for a week in South Dakota doing construction and also hiked the Smoky Mountains. Travel is more difficult when you have to haul around a machine and supplies, but it shows me I can do it, if I want to. If I don't do what I want, I start feeling restricted because of dialysis. I know there are some things I just cannot do, but most things that I put my mind to do happen.

In 1997, my family started a foundation called KidNeeds, which raises money for DDD research. My dad, an otolaryngology professor and doctor at the UI, devotes some of his studies to DDD. My mom keeps a database of DDD patients and helps families cope with the illness. My identical twin, Jess (who doesn't have the disease), and I also make jewelry and greeting cards that have raised more than $25,000 for KidNeeds.

Often, it does seem as if DDD takes up so much of my time. But, my efforts don't go unnoticed. Last year, my mom nominated me for a "Kidney Idol" contest organized by a dialysis company. She told the story of how she came into my bedroom one night when I was about seven and found a message I'd taped to my window. It said: "Dear Angels, I left my window open so you could come in and heal me, if that's ok. I need surgery for a new dialysis catheter and would really rather not have it. Love, Jenna."

I received votes from all over the world—including from complete strangers—and beat 2,000 other people to win a cruise vacation. In June, I leave for Alaska, where I hope to hike and fly-fish.

After I graduate from Iowa, I'd like to do something related to architecture. I look forward to what surprises the future has to offer. Like the cruise, life is always an adventure.