Laura Ellsworth, living donor kidney recipient, Portland, Ore.
Laura Ellsworth with her husband, Steve.
During a routine sports physical, Laura Ellsworth, then a 17-year-old high school senior, was diagnosed with kidney failure when tests revealed her kidneys were functioning at only 30 percent. Doctors didn't know why her kidneys were failing, and told Ellsworth it could take two to twenty years until she needed dialysis or a transplant to live. Little did she know how quickly the diagnosis would change her life in more ways than one.
At the time of her diagnosis, 20 years seemed far off to face kidney failure, and Ellsworth went about with her busy life, not wanting to accept the inevitable. Her kidney function was monitored through blood tests every six months and remained steady. Ellsworth now realizes that she overlooked various abnormal symptoms such as not being able to stay up late without experiencing nausea, leg pains and a funny taste in her mouth (like ammonia). Later, she found out the ammonia taste was from the toxins in her blood.
When Ellsworth was 21-years-old, things began to change drastically. "The taste in my mouth was more profound and I felt run down. I also had no appetite and lost weight. That's when it finally hit me that I was in kidney failure," Ellsworth said. And she was right; tests confirmed her kidney function had dropped to 17 percent.
When Ellsworth's kidney function dropped below 20 percent, the workup began for a kidney transplant. Right away, family members lined up and offered to be her living donor, including her husband, Steve. He was immediately ruled out due to his blood type, as was Ellsworth's half brother. Her mother and father, Howard Benyas, were also tested and her father proved to be a good match. This wasn't without a glitch as a routine heart stress test ten days prior to the transplant came up positive. "Thankfully, it was a false positive confirmed by an angiogram. The whole experience was very scary for everyone in the family," says Ellsworth.
In the meantime, Ellsworth's health continued to decline. "It was to the point I didn't want to talk to my parents because it broke my heart to admit to them that I didn't feel well. The only one who knew how bad things were was my husband. I hid how bad I felt," Ellsworth said. It was soon apparent to everyone just how sick she had become. "Within the last couple of years, I was pale, had lost a lot of weight and was anemic. The transplant saved my life," said Ellsworth.
On October 19, 1999, 23-year-old Laura Ellsworth received her father's kidney at the Oregon Health and Sciences University in Portland. "It was a strange and emotional morning as I watched my father get wheeled away. I just prayed he would be okay through this. I was on an induction drug at the time, to knock out my immune system, so I wasn't doing well that morning, between the medications and knowing my father was in surgery," says Ellsworth. She recalls fondly what her transplant surgeon, Dr. John Barry, said to her before the transplant. "He said, Laura, the kidney is beautiful, your dad is doing well, and I'm just going to have some lunch and we'll put that kidney in you."
Though Ellsworth experienced a rejection episode right away and was back in the hospital on October 31 (her 24th birthday), the doctors were able to treat and reverse the rejection. She has not had any problems since.
The healing process after the rejection episode went very smoothly and Ellsworth saw results immediately. "When I first opened my eyes and became coherent, I felt better, even still under the anesthesia effects," she said. Her creatinine level went from over 5 to 1.7 in a matter of hours. "I had never known it to be that low. The kidney started working right away. It was incredible. I can't even describe how much better I felt," said Ellsworth.
With a renewed sense of energy, Ellsworth decided to volunteer at Oregon Donor Program, the educational non-profit organization that promotes organ and tissue donation in Portland. "I felt so grateful for this gift and wanted to give back to the community. I staffed information tables and spoke to groups spreading the message about the importance of organ donation. I was in denial before, even as little as three weeks before the transplant. However, at that moment, I realized my life was going to change, whether it was dialysis or having a transplant. And I really feel in many ways that my life began when I had that transplant," said Ellsworth.
Ellsworth started out as a volunteer at Oregon Donor Program and eventually got a full time position as the program coordinator, a position she held, until recently, for the last four years. She coordinated outreach activities in the service area to promote donation and transplantation, and managed volunteers.
Ellsworth currently serves as a member of the OPTN/UNOS Patient Affairs Committee.
Since Ellsworth's involvement in the donation community, she has become familiar with the Breakthrough Collaborative goals and believes the community needs to continue to focus on the ways to make improvements happen. "I think the decision comes from education prior to the tragedy. And if we can get people talking about donation with each other within the family unit and clear up the myths and misconceptions, it will help us reach the goal. Reaching the goal also includes the use of effective requestors who encourage donation, along with the continued development of state donor registries. I think the ideas are in place, we just have to keep working on them," said Ellsworth.
Note: Ellsworth recently left her position at Oregon Donor Network to take the public affairs coordinator position with Planned Parenthood.