|Breaking away from ‘the machine’: The rising need for living kidney donors|
By Sheridan Smalley
Three times a week, for four-hour shifts, Queen Anne resident Sandra Driscoll heads to what she jokingly calls her “part-time job”: undergoing dialysis at her local treatment center.
At 62, Driscoll is one of 95,459 individuals in the United States on the waiting list for a kidney transplant — 1,570 in Washington state alone, according to data from the Organ Procurement and Transplantation Network, which is operated by the United Network for Organ Sharing.
“If I think about it a lot, it’s both scary and sobering,” Driscoll said, “but I don’t walk around thinking about it like that all the time.”
With March 14 designated World Kidney Day and April as National Donate Life Month, the need for donors is as great as ever. For patients like Driscoll with complete kidney failure, a transplant is often the best option. But even for those who qualify, there are simply too few donors, and patients and experts alike stress the shortage of living donors in particular.
“There is a serious need,” said Paige Kayihan, independent donor advocate for the University of Washington Living Kidney Donation program.
According to statistics released by the Organ Procurement and Transplantation Network, in 2012, there were just 13,041 kidney donors nationwide. More than half of these donors (7,421) were deceased. In Washington state, the number of donors was just 285 — 60 percent of whom were deceased.
“It’s important for people like Sandra to get out there and tell their story and find a living donor if they can, because there’s not enough deceased donor kidneys to go around,” said Linda Sellers, public-relations manager of Northwest Kidney Centers, the nonprofit dialysis provider that serves Driscoll.
The long-term prospects are much better for recipients who have a living rather than deceased donor. According to Organ Procurement and Transplantation Network data, survival percentages are consistently higher for those receiving live-donor kidney transplants. The latest five-year survival rate — defined as the number of individuals functioning and alive — for recipients who had a deceased donor is 66.6 percent, vs. 79.8 percent for those who underwent a living-donor transplant.
Of the living donors who do come forward, Kayihan said, the high majority designates the recipient to whom they wish to donate. But for those like Driscoll, who are unable to find a match among family or friends, the ideal is to find an anonymous living donor, or “non-directed” donor. Such individuals are difficult to come by.
“It’s rare, but very hugely heartwarming,” Sellers said. “Donating a kidney is always unusual, so a smaller subset is people who are willing to give a kidney without knowing who is going to get it.”
George Taniwaki, 53, is one such living, non-directed donor. In 2010, he donated one of his kidneys through the University of Washington Medical Center, inspired to do so after reading a 2007 article detailing the growing trend toward non-directed donors.
“I said, ‘Oh, I can do that,’ ” Taniwaki said.
The process for a non-directed donor, Kayihan said, begins with a series of medical and psychological tests to determine whether the individual is both physically and emotionally healthy enough to donate. Receiving approval can take months. Financial costs to the donor are typically transportation expenses and lost wages for time off work, with the recipient’s insurance typically covering all other medical costs.
“It’s a major decision,” Kayihan said. “People have to be very comfortable with it.”
Once a donor is approved, medical-center representatives search for a match, generally a patient from their center who is listed on the national registry. According to the National Kidney Foundation, this list is prioritized mainly by the amount of time a candidate has been waiting, as well as other factors such as blood type and immune-system activity.
After a match is found, the actual surgery typically requires a two- to four-night stay in the hospital, as well as a four- to six-week recovery period. Although the procedure can frequently be done laparoscopically, Kayihan emphasized that it is indeed a major surgery. She and Taniwaki agreed that this fact, combined with lack of awareness, likely accounts for the low number of non-directed living donors.
“Outcomes are good,” Kayihan said, “but there are risks.”
Following the procedure, there are opportunities for non-anonymous communication between donor and recipient if both parties agree. In Taniwaki’s case, like many others, he does not know who received his kidney. Over two years after surgery, he said he feels “fine” and does not regret his decision, a common reaction of living donors; according to the National Kidney Foundation, studies have reported that less than 1 percent of living donors regret their choice.
“I’m very happy with it, and I would do it again,” Taniwaki said, “but, you know, I only have one kidney left so I can’t.”
If Driscoll is able to find a donor, it will not be her first transplant. In her mid-20s, she was diagnosed with Type I diabetes, a disease that eventually led directly to the failure of her kidneys and pancreas, as well as substantial vision loss in 1992. That time, Driscoll luckily waited only about five weeks before receiving the call that a compatible donor was found.
“It was the happiest day I can remember,” Driscoll said. “I’ve had some great days — don’t get me wrong — but it was pretty extraordinary.”
At age 41, Driscoll, thus, underwent her first kidney and pancreas transplant, receiving organs from a deceased donor. That “extraordinary gift,” she said, allowed her to lead a fulfilling law career and contribute as a volunteer for numerous local organizations.
But donated organs do not last forever, Driscoll said. After 17 years, her pancreas failed, followed by her kidney two years later, in 2011. This time, the average waiting period for someone with Driscoll’s blood type (O) is four to five years, of which she has been waiting about 16 months.
“The waiting time 21 years ago was a lot less, dramatically less,” Driscoll explained. “There’s just a substantially higher demand and, yet, not a dramatic increase in donors.”
According to Sellers, chronic kidney disease is up 30 percent in the last decade. The main cause, Sellers said, is typically diabetes, as well as high blood pressure, with the obesity epidemic a contributing factor to the rise.
The donor shortage puts the waiting time for a kidney at up to about five years in King County, Sellers said. For those who wait, dialysis is the only treatment option, which can be performed either at a center or at home. The process essentially mimics kidney function and, although not painful, Driscoll said, leaves her feeling exhausted.
“It’s literally that machine that keeps you alive,” Driscoll said, who credits the support of family and friends for her ability to still enjoy life.
The gift of life
The condition of patients who receive dialysis varies entirely by the individual, Sellers said. Some are able to thrive; others are more sick and frail. All are expected to follow a strict diet and regimen of immunosuppressant drugs, as well as severely limit their fluid intake.
For Driscoll, the greatest change is in her level of energy, which causes a lack of spontaneity.
“I think I just do less of things,” Driscoll explained. “You make do with wherever you are at the moment, so I still get out and do the things I like. I just don’t do it as much and, once in a while, have to cancel.”
When talking about the future, however, Driscoll shines with optimism. If she were to receive a transplant, she plans on getting back into volunteering and mostly just hopes to “feel good again.”
“I think I can just get back to being really active, and hanging out more with family and friends, and traveling, and just not waking up in the morning tired. And I can eat,” she said, with a laugh.
“They call it the gift of life, and that’s what it is, literally, is giving me life again. I mean I’m alive now and doing things, but again, it’s because of the wondrous machine. To get the kidney means I don’t have to rely on that machine to remain alive, and that’s extraordinary, that’s absolutely extraordinary.”
For those interested in becoming a non-directed donor or learning more about the process, contact the UW Living Kidney Donation program at (206) 598-3627 or visit http://www.uwmedicine.org/kidney.