Jenna Smith undergoes treatment using a NxStage home dialysis machine.(Photo: Special to the Press-Citizen)
When Jenna Smith, 29, returns to visit her parents in Iowa City twice a year, it takes a community.
The West High School and University of Iowa graduate was diagnosed with dense deposit disease, a rare disease that causes kidney failure, at age 6.
"If you think of the kidney like a filter that's making espresso coffee, and it gets plugged up — the kidneys don't work," said Richard Smith, Jenna's father and a physician at University of Iowa Hospitals and Clinics.
When Jenna was first diagnosed, the medical community understood very little about DDD. Richard and his wife, Lynne Lanning, said they felt they had to do something, so they started a nonprofit foundation called Kidneeds, which puts 100 percent of contributions toward DDD research.
When Jenna went into renal failure due to DDD at age 14, her father donated a kidney. The transplant was successful, but ultimately Jenna's system rejected the organ.
"With DDD, virtually everybody gets recurrence with a transplant," Richard said.
Jenna received in-center dialysis treatment for a few years after the transplant rejection, and in 2004 began therapy on the NxStage System One, a dialysis system that has been approved for home use.
"Doing (dialysis) at a center required me to do fewer times, and longer," Jenna said. "Your body goes through a lot."
For each home dialysis treatment, Smith inserts needles from the dialysis system into an artery in her arm.
"Basically I'm my own nurse with my partner," she said. "What that means is on a weekly basis, I do five to six days of treatment at home versus three days at a hospital."
Home dialysis freed Jenna of the need to take off school or work for dialysis treatment.
"With frequent treatment, the body goes through adjustment more quickly and recovery time is almost nonexistent. I feel great," she said.
Because of in-home dialysis, Jenna was able to complete her undergraduate degree in engineering and 3-D design at UI and continue graduate work in architecture in Oregon. She is now employed in 3-D digital modeling at an engineering firm in Seattle.
"(In-home dialysis) allows me to live my life and focus on my life," Jenna said. "I can do whatever I want."
Through Kidneeds, $50,000 grants for DDD research may be awarded annually based on a scientific board review using National Institutes of Health standards. Once the scientific board reviews a grant, the advisory board selects recipients. The fund has raised almost $2 million since its inception in 1998, Lanning said.
"The (Iowa City) community is small enough so that everybody knows everyone a little bit," Richard said. "But it's big enough to make a difference. A foundation like this may not have as big an impact in a larger city."
Jenna's identical twin sister, Jessica, does not have DDD.
"To people in the Iowa City area, our message is 'thank you,' " Lanning said. "What has been done with the funds they have donated over the years is that we have moved from a position where they knew nothing about the mechanism of the disease to now we have a very good structure of how the disease mechanism works. Their trust has been well placed."
More information
Kidneeds:www.healthcare.uiowa.edu/kidneeds/index.htm
NxStage Medical Inc.:www.nxstage.com
DDD conference: Kidneeds will host its 10th annual family conference for patients with DDD and their parents Oct. 3. For more information, contact Lynne Lanning at
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