‘What I can, I’ll do:’ Woman waiting for kidney seeks to raise awareness about organ donation
photo by: Jackson Barton
Julie Arenson has always struggled to ask for help. Now her life depends on it.
“It humbles me to my core to know that people are willing to donate an organ to help me lead a better and healthier life,” Arenson said. “I had to ask for help and that was hard.”
Arenson, 60, of Lawrence, knew in January that her donated kidney would fail. She’s currently on a waiting list of over 100,000 other patients, according to the U.S. Department of Health and Human Services. The median waiting time was 3 1/2 years in 2009. Arenson wants to educate people on the importance of organ donation while she anticipates a new kidney. She said she thought one reason that wait times were long and transplants relatively infrequent was because many people have never had a personal experience with someone needing a donation.
“Unfortunately, my family and I, we’ve lived this and we’re very well aware of how important this is,” Arenson said.
Arenson plans on participating in the National Kidney Foundation’s Kidney Walk in Kansas City in September. She is also applying to be a peer mentor for the NKF.
“Because of my experience with transplant and now dialysis and waiting for another transplant, I think it could be beneficial to help others on this emotional roller coaster,” Arenson said. “I can only do so much, but what I can, I’ll do.”
While Arenson waits for a compatible donor, she’s being treated at home by a dialysis machine for eight hours every night. She said she’s lucky she’s been able to continue working full time for a professional development publishing company while receiving treatment.
“She is very positive, but it’s been rough on her,” Arenson’s sister Kathy Zeismer said. “With the dialysis, I just see her emotions are much stronger now. It’s gotten the best of her at times, and it just breaks my heart.”
photo by: Jackson Barton
As of June 13, over 102,000 people were waiting for kidney transplants in the U.S.; however, just over 21,000 kidney transplants occurred in 2018. Over 4,000 patients died waiting for a kidney last year.
“These statistics are not good, to be honest,” Lee Cummings, surgical director of the kidney transplant program at Saint Luke’s Hospital of Kansas City, said.
Deceased donors make up the majority of kidney donations. Fourteen-thousand people received a kidney from a deceased donor last year. Cummings said education about organ donation helped his staff save lives and make the most out of tragic situations.
“We couldn’t do what we do without the donor families,” Cummings said. “People die, and our job is to deal with stressful situations for families and turn it over, pay it forward and be able to provide those gifts to other people.”
Arenson received her first donated kidney 16 years ago from her middle school best friend, who is still alive. Although she understood the organ likely would not last forever, Arenson said she was devastated when she heard the donated kidney was close to failing.
“I tried so hard,” Arenson said. “I led a healthy lifestyle, followed directions from the doctors to a T.”
Cummings said living donor transplants typically last around 10 years. He said even when patients do everything they can to help the kidney survive, the body’s immune system will still slowly reject the organ and that 16 years is a great run.
“They did a good job in terms of taking care of their body and taking their medication,” Cummings said. “So that would be what I consider a good outcome.”
Despite being an O blood type — meaning only other O blood types can donate an organ to her — and potentially years away from a donation, Arenson cannot help but keep positive and said she’s lucky to have so much support from her siblings and husband, Barry Arenson.
“My husband always says I can find something positive in a dumpster fire.” Arenson said. “I feel like a fortunate, glass-half full kind of person.”