Eugene, OR, Register Guard: Dialysis No Barrier
WEB NOTE: JENNA SMITH RECEIVED HER BS DEGREE IN 2009 IN CIVIL ENGINEERING FROM THE UNIVERSITY OF IOWA.
With classes starting this week at the University of Oregon, most students will be preoccupied with adjusting schedules, finding classrooms and making sure they’ve got the right textbooks. In addition, Jenna Smith, a second-year graduate student in architecture, will be fitting three hours into each busy day for hemodialysis.
Smith, 25, was diagnosed at age 6 with DDD — dense deposit disease — an autoimmune disorder that prevents the kidneys from filtering waste from the blood. The wastes build up in the glomerulus, the part of the kidney that serves as a filter, and it becomes inflamed and scarred to the point that the kidneys lose function. DDD, sometimes called membranoproliferative glomerulonephritis but not identical to that disorder, usually begins in childhood between ages 5 and 15. Kidney transplants are an option but usually fail eventually, and so far the only other treatment is perpetual dialysis.
By now, Smith is used to that. Nearly every day — she occasionally gives herself a day off, “but I feel much better when I don’t,” she says — she cranks up “Jamal,” the name she and her friends bestowed upon the white, 2-foot cubical machine that sits between desk and bed in her downtown Eugene apartment.
She attaches a variety of plastic tubes to Jamal, one connected to a bag of saline solution and another snaking down into an end-tablelike black cube under the dialysis machine. It contains a three-day batch of dialysate, the solution that removes impurities from her blood as it passes through a cylinder containing a semi-permeable membrane that acts as an artificial kidney, the blood moving through the membrane’s “capillaries” while the solution flows around them.
At the ends of two of the other tubes, she attaches 15-gauge needles that she slides into an artery and a vein, creating a loop to send waste-laden blood into the machine and then push the cleaned blood back into her system.
During the nearly three-hour session — it takes 20 minutes to get Jamal set up and 2½ hours to filter 20 liters of dialysate through the machine, plus a few minutes to break down the setup — Smith studies, reads, does art work or even eats as she sits on her bed or at her desk.
“I first went on dialysis when I was 7 years old, and then at 14 I had a kidney transplant,” Smith says. “But somehow, the disease knew there was a working kidney there, so it destroyed it, and I was back on dialysis at 15 and have been on it ever since.”
She has led an essentially normal life, graduating from high school and then earning a double major at the University of Iowa in 3-D studio art and civil/environmental engineering. She chose the UO for graduate school “to establish myself as a person — I’ve never been away from my family this long before — and I have had a great time. My life was more hampered by DDD when I was a child, when I couldn’t do things like having overnights with friends. But now, my life is totally normal except that I have to plan the time to do dialysis.”
Her identical twin, Jessica, who does not have DDD, took a different path, joining the Peace Corps after college; she returns from her stint in Peru in December.
Their parents, Lynne Lanning and Richard Smith, who still live in Iowa, where Smith grew up, became alarmed when Jenna began running a fever, passing blood in her urine, experiencing flulike symptoms and developing overall puffiness in her body tissues. They consulted doctors in Iowa City but ended up at a clinic in Cincinnati, Ohio, where, “after lots of exams and lots of labs,” Smith says, they got the DDD diagnosis.
At first she had peritoneal dialysis, which takes eight hours and involves pumping fluid into the peritoneal cavity in the abdomen, letting it pull wastes out of the blood, flushing it out and then repeating the process.
“It all depends on how much kidney function you have left,” Smith says. “But when you get to the point that your kidneys don’t function at all, as mine don’t — my body doesn’t create any urine — then hemodialysis is the solution. With peritoneal dialysis, the machine sends the fluid into the the body to clean the blood. Hemodialysis takes the blood out of the body and puts it through the machine.”
Doing hemodialysis at home has obvious advantages. People who go to a medical facility for dialysis usually go no more often than three times a week, while at home it can be done every day, “which allows you to feel so much better, because you’re removing the deposits from the blood almost every day,” Smith says. “If I skip a day, I can tell I don’t feel as good, and I feel so much better after I do it.”
Besides the buildup of toxins with less frequent dialysis sessions, patients also have to restrict their fluid intake because their bodies can’t expel the excess, which also can diminish overall health.
At the moment, because of the health care overhaul passed by Congress in 2008, Smith’s hemodialysis is covered by her parents’ insurance, which allows children to stay on their parent’s policies until age 27. However, “some insurance doesn’t seem to like to pay for almost daily dialysis, even though studies show that people have much better health overall when they do it,” she says.
Her diagnosis changed not only her life, but also her parents. Her father is a physician and medical researcher, her mother a nurse, attorney and adviser to the department of Art and Art History at the University of Iowa. After their daughter’s diagnosis, they formed the Kidneeds, a fund within the nonprofit Greater Cedar Rapids Foundation, to educate the public and medical professionals about the disease, raise money for research to develop new treatments, and seek a cure. Fundraising efforts since 1997 have brought in $1.25 million.
Although she’s hopeful that someday she won’t have to do daily hemodialysis — “There’s a drug that shows some promise in being able to bind the proteins that gather in the kidneys,” Jenna Smith says — she knows it’s a long shot. In the meantime, besides pursuing a normal young adult life, she’s willing to become one of the faces of DDD.
“Nobody wants to be different from everyone else, but I’ve been through this all my life,” Smith says. “I just figure, I have to do this, and if it helps other people, then it’s fine if everyone else knows about it, too.”