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Alum seeks living kidney transplant

Published: October 5, 2012
Section: Features, Front Page


For Brandeis alum and 29-year-old Julia Kleyman, days filled with dialysis treatment, check ups and donor searches now replace her old hours spent working in the scientific instruments industry.

Diagnosed with chronic kidney disease at age 17 but suffering from kidney failure since this April, Kleyman described the search for a living kidney transplant as a full-time job, along with the full range of accompanying emotions it brings every day.

“I miss my life. I miss my job. I miss being mobile and able to go where I want. I miss swimming,” Kleyman said, sitting on a Great Lawn bench, speaking openly and relaxed in her red flowered dress and gray blouse on a late August afternoon. “At a certain point, it’s like you can’t do more, especially because you’re sick. I can’t do more in a day,” she said. Her close friend Deblyn Palella sat nearby, sending and exchanging emails with prospective donors and doctors on her Blackberry.

Her job required extensive focus and prior to the kidney failure, Kleyman had been working nearly full time.

“It’s a job that you really have to be good at everyday. You really have to be on point.”

“Now I’m at my parents’ house all the time doing dialysis,” she added.

Kleyman launched the website SaveJulia.com in her search for a donor with “O” blood type, BMI of 30 or below, between the ages of 25 and 60 and in very good health.

“If you’re a healthy person under the age of 60, you can save a life or two,” she said.

Explaining her passions for hiking, reading, swimming and science, Kleyman reflected on the dominating and growing sense of frustration, stemming from the kidney search.

More than 15 of her friends and family members have already been tested as potential donors, but all of them have been disqualified because of either an incompatible blood type or underlying health issues. Kleyman and Palella described the disappointment of so many willing donors who undergo routine tests and find something wrong with their health that prevents the procedure. The tests, for example, revealed that one family member has Hepatitis C, another has kidney disease and a third has cancer.

“We started off very optimistic because we had a lot of donors coming through close friends,” Kleyman said. “It is literally the million dollar workup. If there is anything remotely wrong with you they will find it.”

Kleyman said the support of her friends and family, along with their willingness to listen, has helped her stay positive, even as the frustration grows with each day of the search.

“Some people get kind of lost and intimidated by a situation like this, and I don’t really know what to do but most people are helpful,” she said.

Her other coping mechanisms include talking about the process. “I talk a lot. I talk a whole bunch to everybody, all the time,” she said with a laugh.

As part of her publicity campaign, the Brandeis Alumni Association published an article, and Kleyman contacted her Newton North High School class president to send a letter. Facebook and her website also include updates and detailed links on the ways to become a donor.

But Kleyman and Palella said that another challenge has been communicating with people who know little about how they can help and where they can find more information.

“It’s amazing, there’s just not a lot of information out there,” Palella said. “The lack of knowledge is unbelievable.”

“Through living donation, a healthy person can donate one of their kidneys and continue to live a perfectly normal, healthy life. Living donors allow those in need to circumvent the need for dialysis (which can be extremely hard on the body and reduce the longevity of a donor kidney once transplanted). Kidneys from living donors also offer a number of superior benefits, from greater success rates to nearly double the years of function,” according to SaveJulia.com

More available than living kidney donations, deceased kidney donations can only last 10-15 years while living kidneys can last 20-30 years when transplanted. Recipients can undergo more than one transplant, Kleyman explained, but her search, outlined on her website and following medical advice, focuses on finding a living donor.

When Kleyman spoke to The Hoot, she expressed frustration but also quiet optimism that she would find a matching donor because of how many people had already come forward. She also explained the nervousness that comes with waiting to find the right match.

“The faster, the better. It’s problematic to be on dialysis for more than six months,” she added.

And now, as the fall has passed, the success of her search depends on the readiness and willingness of friends, families, hospitals, communities and strangers who are able to help. Her search seeks anyone willing to try.