Recipient and donor forge bond after altruistic organ donation
By Kevin McKeough
Teresa Kieffer wanted to donate one of her kidneys for organ transplant — but she didn’t know anyone who needed it.
Maurie Cone needed a kidney transplant — but didn’t know anyone who could donate one to him.
Cone ultimately received Kieffer’s kidney, but it wasn’t until after the transplant that they learned of each other, met, and formed a powerful bond.
“She’s like a daughter to me,” Cone says of his extraordinary benefactor.
“Maurie and his family welcomed me with open arms,” Kieffer says. “They have been family ever since.”
Their remarkable story illustrates the possibility and profound impact of living organ donation. Healthy adults potentially can donate any of several organs for transplant, including one of their two kidneys (they can live normally with just one) and one of the two lobes of their liver (which will regrow).
Nearly 6,000 living donations were made in 2015, accounting for about 16 percent of all organ donations that year, according to the U.S. Department of Health and Human Services’ website organdonor.gov. The rest come from deceased individuals who registered to have their organs donated after death.
The need for both kinds organ donation is immense. While 33,595 organs were transplanted in the United States in 2016, 118,809 people in the U.S. were in need organ transplant as of January 23, according to the United Network for Organ Sharing (UNOS), a non-profit organization that manages organ transplant across the United States. On average, 22 people in the United States die each day while awaiting an organ transplant.
Living organ donation is best option for transplant recipients
The vast majority of living donors are family members or close friends of the person who receives their organ for transplant. “Most people know the person, and in many cases, they’ve seen the detriment to the patient from the renal (kidney) disease,” says Edward Hollinger, Jr., MD, PhD, a transplant surgery specialist at Rush University Medical Center. “That’s their motivation for coming in, to help a friend or loved one to get better.”
Kieffer, on the other hand, belongs to a small group of people known as altruistic or non-directed living donors, who choose to donate an organ simply out of a desire to do good, without knowing anyone who needs a transplant. Paired donation programs match these donors and their organ recipients anonymously.
Whatever the circumstances, living organ donation not only helps meet the great need for donor organs, but also produces more rapid and lasting improvement in transplant recipients than organs donated after death. “Living donor kidneys usually work right away, they work well, and they have the longest expected function,” Hollinger says.
‘It was a way to give back’
Kieffer herself didn’t know that living organ donation was possible until she read a book about a transplant recipient and was inspired by it. “My daughter was a year old, and I was feeling grateful for my life and everything that had transpired to that point,” says Kieffer, 39.
She researched organ donation online, and found the idea compelling. “It was a way to give back,” she says.
“It was my way of thanking God and trying to do something good. There are people with the financial means to donate to charities and causes, I knew I had a healthy kidney to offer someone.”
Evaluation process ensures organ donor’s health and consent
Family matters forced her to wait a few years, but in 2013 she began the organ donation process. She wanted her kidney donation to start a chain of multiple donations, with someone donating a kidney on behalf of each organ transplant recipient.
“An altruistic donor may facilitate just one transplant, or they might start a chain that facilitates 10 or more transplants by being a starter donor for this whole process,” Hollinger says.
Because she couldn’t find a hospital in Michigan that would take part in a chain with an altruistic donor, Kieffer looked into transplant centers in Chicago. When she researched transplant center’s online, Rush’s website gave her the greatest confidence in its transplant program, and her feelings were confirmed during her communication with a transplant coordinator.
Kieffer took advantage of the availability of direct flights from near her home in northern Michigan to Chicago, traveling to Rush twice to undergo a battery of tests to confirm she could be a kidney donor. “Rush really made me feel good knowing the doctors were looking for everything to be absolutely sure I was healthy and able to do this,” she says. “After going through the process, I felt exceptionally healthy and excited to proceed.”
The tests included a thorough psychosocial evaluation. “We spend a great deal of time with the potential donors to make sure they understand what they’re undertaking. We really spend a lot of time on informed consent,” Hollinger says.
“They really want to make sure you want to do this,” Kieffer adds. “They’re trying to make sure your mental place is good, that you know you want to it, you’re not getting paid, you’re not being coerced, you’re not feeling guilty about anything.”
‘You can be just fine if you have one kidney’
The only time she worried about her decision was when family members and friends objected, which she’s found is common even when a donor is giving an organ to a loved one. “The fear of death or detriment to health is huge concern with people. I don’t think people realize you can be just fine if you have one kidney,” Kieffer says.
On the other hand, Heritage Broadcast Co., the CBS/Fox television affiliate where she works as a district sales manager, was supportive. “They provided me with flexibility in my schedule and allowed me to take recovery time without having to use up sick time” Kieffer says.
In late October of 2013 she flew to Chicago, “enjoyed time with my mom in the Windy City and devoured a delicious meal,” then checked into Rush. That night, Kieffer’s mother cried at her bedside, asking if she was scared, but she wasn’t.
“I always felt really confident with Rush and all the surgeons I met,” she says. “I had total faith in the team.”
Less invasive surgical techniques enable donors’ faster recovery
The next morning, Kieffer was wheeled into an operating room and put under general anesthetic. To remove her kidney, Hollinger made a 6½ centimeter incision in her belly button, just large enough to remove the kidney, and two smaller incisions, through which he passed surgical instruments.
This procedure, called hand-assisted laparoscopy, is far less invasive than open surgery to remove a kidney, which requires making an incision under a rib and sometimes removing a rib. “You can’t make it completely minimally invasive, because you have to take the kidney out at some point, but it’s much less invasive than a traditional open surgery,” Hollinger says.
Transplant surgeons at Rush use this and other minimally invasive approaches for most transplant donation, which allows for a faster recovery. Donors are typically able to go back at work within weeks after surgery.
Although no surgery is completely risk-free, the risk of living organ donation procedures “are less than most of the operations we do, in major part because the donors are so healthy,” Hollinger says. “We’ve spent a lot of time and resources proving they’re healthy.”
‘I feel better than I did before’
Kieffer came through her surgery easily. “It seemed like five minutes later when I woke up in recovery,” she says. “The first thing I asked is ‘did they take it?”
She experienced some short term effects during the first few weeks after surgery – Kieffer needed a lot more fluids than usual while the body repaired itself and felt a physical emptiness inside herself at first.
Now, she says, “I feel better than I did before (the surgery). I eat healthier, I exercise, and I have a new-found confidence in life.”
Last year, Kieffer even ran a five-kilometer race, which she’d never done before. “You feel high on life. It just feels good inside,” she says.
While embracing a healthier lifestyle can be a residual benefit living kidney donors may experience, “it really doesn’t change your life, except in the sense that you don’t’ have your back up kidney anymore,” Hollinger says. For that reason, UNOS requires all transplant centers to monitor a donor’s kidney function for a few years after their organ donation, and transplant specialists strongly encourage donors to continue life-long monitoring of their kidney function.
“We teach that to the donors over and over again: Have a primary care doctor and get your kidney function checked at least once a year,” Hollinger says.
But what if a donor does develop kidney failure later in life? “The safety net you get as an organ donor is, if you need a transplant down the road, you go to the top of the list” to receive a transplant, Hollinger explains.
Donation starts chain of three transplants
While Kieffer was going through the process of donating her kidney, Maurie Cone, now 81, was becoming increasingly in need of one. A retired dentist and widower living in the Los Angeles area, Cone had been suffering for years from deteriorating kidney function.
By 2013 he had reached the point where he soon would need dialysis (the use of a machine to filter the blood when the kidneys no longer can perform this function). “At that point I was ashen white. I was going to be in kidney failure soon,” he says.
His age made him ineligible for an organ transplant at UCLA Medical Center, the transplant center nearest him, unless a donor specifically designated him as a recipient. However, Cone’s son couldn’t donate for medical reasons, and his daughter wasn’t a compatible blood type. Instead, his daughter signed up for what’s known as a paired donation, agreeing to donate one of her kidneys for transplant in exchange for another person donating a kidney for her father.
The exchange was coordinated by the National Kidney Registry, a non-profit consortium of member transplant centers, including Rush. The process anonymously matched Cone’s daughter’s kidney with a recipient in Virginia (who remains unknown), and matched Kieffer’s kidney with Cone. In addition, a patient at Rush received a kidney from a donor on the Virginia patient’s behalf.
Making the most of renewed health
The kidney that Hollinger removed from Kieffer’s abdomen in Chicago was packed in ice, put on a plane and flown to Los Angeles, then brought to UCLA Medical Center, where a surgeon transplanted the organ in Cone.
“When it was done and I woke up for in the morning, I said ‘Oh my God, I have color,’” Cone remembers. “Within three weeks, I was in the gym again.” He rides a stationary bicycle every day and works on weight-resistance machines three times a week.
“If I’d been on dialysis for the past three years, I’d be half dead,” Cone says. “I’m thrilled that I don’t need it. After three years, the kidney is functioning very well.”
In addition to watching his granddaughters grow up, Cone plays bridge once a week with friends, watches baseball games and old Westerns on TV, and spends time with a widow he began dating six months before his transplant – and who lost her husband to kidney failure.
The couple has traveled together to New York, Florida and Italy and took a cruise to New England and Canada this past September. “I never would have done that,” without the transplant, he says.
‘There’s a part of me inside him now’
To protect privacy, transplant coordinators only put living organ donors and recipients in touch if both of them give their consent to it. “We don’t give any information out until after the whole process is done. There’s a cooling-off period, if you will,” Hollinger says.
Kieffer had granted her permission, and after Cone had recovered from his transplant surgery, he wrote her. She wrote back asking if she could meet him, and in January 2014 she flew to L.A. for a meeting recorded by a news crew for the local CBS and Fox news programs.
During her visit, Kieffer touched Cone’s stomach and felt where her kidney was inside him. “It’s a medical miracle that you can take an organ out of a person and put it in another person, and both people are healthy and feeling wonderful afterwards,” she says.
“It was amazing. There’s a part of me inside of him now.”
‘He made my life better’
Their connection had deepened since then. Kieffer flew to L.A. again to surprise Cone at his 80th birthday party, and spent this past Thanksgiving with him and his family, bringing her daughter with her to meet “the man who has mommy’s kidney.”
“We have a genuine love for each other,” Cone says. “My gratefulness and gratitude and love for her are beyond anything I can say.”
Kieffer feels grateful as well. “He made my life better, he improved my life,” she says.
In addition to transforming, and often saving, the lives of transplant recipients, being a living organ donor is life-changing for the donor as well, Kieffer observes. “Everybody wants to help. I think giving is innate in everybody,” she says. “I wish more people would do it.”