Living Kidney Donors Share Their Stories

Libby Frashier works as the office manager of her church.

Her husband had chronic kidney disease. He spent a year on peritoneal dialysis followed by 3 years on hemodialysis. In February 2016, on the kidney transplant waiting list and visiting his doctor for a follow-up appointment, he was asked whether he had any family who might consider living kidney donation.

"He said immediately, 'I would never ask anyone to do that,'" Libby says. "I asked him if he would accept if someone offered, and when he said he would, I turned straight to the social worker and said, 'I want to be tested.'"

Libby was thoroughly evaluated and proved to be a match. But before the couple was quite ready for surgery, a well-matched kidney became available from a deceased donor. Libby's husband received that kidney, and his health improved almost immediately.

"Then I did some soul searching," Libby says. She knew the toll 4 years of dialysis had taken on her husband and on their livelihood. She had been prepared to donate a kidney and decided she still wanted to. "I felt that if I could help someone live a better life, I needed to do it."

Libby's husband was surprised, but supportive. Once he was confirmed to be doing well following his own transplant, Libby called her new intended recipient – a woman in her church community who Libby knew lived with kidney disease – and said, "If you are willing, I would like to be tested to see if I could be a match for you." The woman, just 40 years old and a fourth-grade teacher, was surprised and beyond grateful.

Libby was a match, and the process unfolded easily. The women's surgeries were both very smooth. Libby said she was surprised by how exhausted she was, but she experienced very little pain. Her care team at The University of Kansas Health System called her a rock star, and she was discharged a day earlier than expected.

Libby and the recipient of her kidney have become very close friends. Libby has no regrets.

"If you are at all tempted to help someone in this way, try it," she says. "It's an opportunity to change someone's life. If I had another kidney to spare, I would do it again."

Shekinah Bailey is an army veteran. He dedicated 8 years of his life to military service. Today, he works for the U.S. Department of Agriculture, developing contracts and grants for telemedicine and distance learning initiatives.

In mid 2016, Shekinah noticed a lawyer he occasionally worked with began posting Facebook messages about her husband's kidney disease. He needed a transplant, but she wasn't a match. She hoped sharing their story might help the couple identify a paired donation opportunity.

Shekinah was struck by their burden. The husband spent more than 10 hours a day connected to a dialysis machine. He couldn't work. They couldn't travel.

"The story was just eating at me," Shekinah says. "It occurred to me that this gentleman had less of a battery life than my iPhone. He had no freedom. I realized I was in a position to give him something I didn't need at no cost to me."

He remembered the pledge he'd made as a soldier.

"I lived with the willingness to give my life for freedom," he says. "Here, all I had to give was my kidney. I had taken an oath to serve, and I saw this as another path to service."

Shekinah also gave thought to the cumulative costs of managing kidney disease. More than 100,000 U.S. patients are on the transplant waiting list, but only about 20,000 donor kidneys become available each year. The cost to care for patients as they wait exceeds $30 billion.

"That's 1% of the national GDP," Shekinah says. "If we could get 100,000 people off the transplant waiting list, we could wipe out a huge cost. We, the public, can fix this. We can take control and make an impact."

In January 2017, Shekinah's kidney was removed and given to the man in need. He said the surgery was very manageable and spoke highly of his care team at The University of Kansas Health System.

"I was so impressed with my entire care team," Shekinah says. "Everyone was so supportive, caring and giving."

Shekinah has no regrets and wishes he could give more.

"My own life is forever changed," he says. "I was able to make a positive difference and immediately see the impact. There is no greater investment than in other people. And I would rather give my life to do the right thing than survive doing the wrong thing."

His mother's kidney disease had both emotional and practical impacts on Martin Gonzales.

"She was on dialysis and had to go in every other day," Martin says. "It was really tough to see her living with so many restrictions and limitations. She also doesn't drive, so it was challenging to organize rides and expensive to pay for cabs."

Hoping to give his mother a better quality of life, Martin was evaluated at The University of Kansas Health System to see if he could become his mother's living donor.

"The staff was so good, so informative and so helpful," he says. "They answered questions I hadn't even thought to ask yet. I can't imagine a better experience. I came to really look forward to being able to do this for my mom."

Martin's employer was supportive, as were his wife and 2 children.

"My wife understood," he says. "She told me she would do the same thing if her mom needed her. And my kids said, 'Anything to help Grandma.'"

Living life with a single kidney hasn't had a negative impact on Martin. In fact, it's been positive, increasing his awareness of healthy living and healthy choices.

"I am less careless now," he says. "I don't drink energy drinks. I'm more aware, more conscious of my health. It's really just been a matter of making the choices I should make anyway."

With her new healthy kidney, Martin's mother enjoys many new freedoms. Martin and his family recently took her on vacation to Cancun, something she would not have been able to do had she not received a kidney transplant.

"It feels really good to help like this," Martin says. "There is a huge improvement in her quality of life that makes it all worth it. I'm so glad I could do this for her, and I would do it again in a heartbeat."

Geologist Monte Markley and his wife of 30 years live on a farm in the Flint Hills of Kansas, where they enjoy their animals, the land and the outdoors. As vice president and project director for an environmental engineering firm, Monte solves problems for a living.

"I like to do my part to keep this world a good place to live," Monte says.

In December 2016, he seized that opportunity in an unexpected way. His wife had lived for years with a slow-progressing illness caused by a congenital kidney defect. When her health took a sudden turn for the worse, Monte was determined to solve the problem.

"I can't describe what it was like to see my wife, a vivacious and energetic triathlete, get sicker and sicker," he says. "I felt absolutely helpless until she was listed. She became my whole focus."

Monte was ready and eager to donate his kidney. Once his wife was on the transplant waiting list, their health insurance would cover the costs of donor evaluation and surgeries.

"We had a lot of discussion as a family," Monte says. "Two of our adult children immediately said, 'Yes, you should do this.' The third was more hesitant, more concerned. I didn't even have to think about it. I was more worried about what would happen if I wasn't a match. What then?"

They began evaluation at a local hospital.

"But we got stopped during the screening process," Monte says. "The hospital was not recognized as a transplant center of excellence, and our insurance would not cover the services. We learned The University of Kansas Health System was the only facility in the state where we could obtain covered services. We had a consult, and the team hit the gas pedal for us."

Fortunately, Monte proved a match for his wife. They prepared for their surgeries. On December 9, 2016, a kidney was removed from Monte's body and transplanted into his wife's. Just a month later, Monte was hunting with his bird dogs and out with his falcons. Meanwhile, his wife's strength and freedom returned, soon, allowing her to again achieve 15,000 to 20,000 steps each day and train for her next triathlon.

"We received phenomenal care," Monte says. "We appreciated the integrated approach. We went to all of our appointments together, so we experienced the complete process for both donor and recipient. The team was extremely focused on both of us as patients. My nephrologist said, 'I know you would do anything for your wife, but my job is to make sure this is in your best interests, too, and that emotions don't override good sense.' I appreciated that incredible level of professionalism and thoroughness."

Living life with a single kidney has not required major changes. Monte notices he drinks more water now, but otherwise simply continues the healthy living he always embraced. He came to realize, too, that donating his kidney had an even greater impact than he initially imagined.

"My wife is back to her normal life, and that was my goal," he says. "But I also came to understand that it wasn't just about us. When I gave her my kidney, she came off the waiting list, and someone else moved up. The kidney she might have gotten will go to someone else. When I helped her, I helped someone I don't even know. There is a multiplier effect."

Monte would make the same decision again, without hesitation.

"Watching what happens to a person with kidney disease is terrible," he says. "Donating a kidney gives someone their life back, takes away their despair. You can make a real difference. It is within your power to change a life."