The Comeback Kidney: In the Vest family, organs come full circle
For most people, the question of donating organs is hypothetical. Sure, you've checked the little box on your drivers' license, and sure, you get a warm glow thinking about all the lives you could save. But then there's that one little (and most unfortunate) hurdle to leap before others can benefit from your boundless generosity: You have to die.
Or do you?
As the waiting list for cadaver organs grows ever longer– there are currently more than 80,000 people in the U.S. waiting for transplants- doctors are turning increasingly to living people as kidney and liver donors.
The challenge for the recipient is finding a donor both willing– and able– to give. Spouses are the most common living organ donors, but in some cases recipients find donors in parents, friends, and even their own children.
One local woman's life has been saved by donors not once, but twice. Thirty-five years ago, Andrea Vest received a kidney from her mother. But that kidney began to fail. Fortunately for Vest, she has two adult daughters– both eager to donate. Two months ago, the family tradition of giving entered a new generation.
Vest spent much of her early childhood sick. Born with malformed ureters, the long ducts that connect the kidneys to the bladder, Vest says she underwent multiple surgeries to keep her kidneys functioning.
At age 16, her health took a turn for the worse and she was hospitalized at UVA.
In an unusual coincidence, at that time the head of UVA's urology department was Dr. Samuel Vest, father of Vest's future husband, Tonchie. Dr. Vest died that year, and his replacement, Dr. Albert Paquin, was a pioneer of a procedure to rebuild deformed ureters.
"It's just another twist in this story," says Vest, now 59. "He never would have come if my husband's father hadn't died."
Vest underwent that reconstructive surgery, and for seven years her health was good.
Unfortunately, she says, that final surgery simply "bought me some time." At age 23, she went into renal failure and was forced to undergo regular dialysis, a cumbersome- and painful procedure. For four months Vest had shunts in her arm, and every two days, for eight hours at a stretch, she had to sit attached to a machine that did her kidney's work, filtering toxins from her blood.
"Being hooked up to a machine," Vest recalls, "was difficult psychologically. I'd be really wiped out for a day or day and a half, and then it was time to do it again."
She couldn't eat much, and she says she grew "incredibly weak." Her weight dropped to 75 pounds.
Doctors told her and her family that her only chance for a normal life was to undergo a kidney transplant.
Her mother, Phebe Sierck, then 49, offered her daughter a kidney without hesitation, says Vest.
Though kidney transplants using living donors have been done in the U.S. since 1951 (in the earliest days they could only be done between identical twins), by 1968 when Vest was having her first transplant, anti-rejection drugs had improved to the point that more distant relatives could donate. The surgery, however, was "much, much harder" than it is today.
In those days, Vest recalls, doctors removed the donor's kidney through his or her back, making recovery far more painful than recovering from today's less invasive abdominal procedure. Compounding the situation was her mother's low blood pressure, which precluded her taking pain medication.
"She had a terrible time," says Vest.
Despite the pain of the surgery and recovery for both Vest and her mother, the outcome was a complete success.
"I wasn't supposed to live or to have children," says Vest. "It's such a huge gift."
That gift carried Vest through two pregnancies– the first with older daughter, Xannie (short for Alexandra), now 34, and the second with Tarpley, now 31. Vest was there for her daughters' high school and college graduations. And it also allowed her to be a part of Tarpley's September 2002 wedding.
But last spring, Vest got news she'd never wanted to hear again.
At her May 1 appointment at UVA, "the doctor told me, 'Things are looking bad,'" Vest recalls. When he mentioned a transplant, Vest says her heart sank.
"I thought it was so unfair because I'd already had a chance," says Vest, citing the thousands of others who have been waiting for years for an organ.
Her doctor had something else in mind: a second living donor. He sent Vest home and told her to talk to her family and friends about the possibility of giving her a kidney.
Though typically blood relatives are more compatible donors, spouses– according to UVA transplant surgeon Dr. Timothy Pruett– actually make up the majority of donors. Vest's husband could not donate for health reasons, but she didn't have to look much further. Though she says her brother and several "very good" friends stepped forth to offer their kidneys, sibling rivalry of sorts erupted between her daughters. Each wanted to donate.
But asking your own child to undergo the risk and pain of surgery is "very different," says Vest, than asking a parent.
"It was so difficult," Vest recalls. "Tonchie and the doctor helped me phrase it. I was scared to ask them."
Vest says she knows a parent will do anything to save the life of a child. That, she says, made taking an organ from her mother much easier.
"You don't expect a daughter to save your life," she says, "your mother, of course."
Though she had initially struggled with even asking them, once she saw how much both her daughters wanted to donate, she says her mind was put at ease.
"The hard part," she says, "was waiting to see if either one was going to be a match."
Both Tarpley and Xannie say the minute their mother told them about her need for an organ, their minds were made up- despite the legitimate personal risk.
"It's an automatic reaction," says Tarpley, a well known planner with Albemarle County government. "It's a very serious thing to need a kidney transplant, but there's something that can be done about it."
The sisters underwent intensive physical screening, both hoping they would be the one selected to donate. Tarpley proved a better match.
For Xannie, that news was hard to take.
"I really wanted to do it so badly," says Xannie. "It was crushing for me. I still wish I was the one to do it."
While Xannie was coping with her disappointment, Tarpley was undergoing further screening to ensure that she was in "perfect health." A part of that screening process is a psychological assessment to make certain the donor's motivations are healthy ones.
Though live organ donation is not uncommon–- the transplant team at UVA performs about 35 such surgeries each year (about half of all organ donations at the hospital)– it is unusual because for the donor it's an elective surgery that carries legitimate risk and no personal medical benefit.
That risk was highlighted in the 2002 case of Mike Hurewitz, a 57-year-old New York man who checked into Mount Sinai hospital to donate half his liver to his brother. The surgery itself went well, but three days later Hurewitz was dead of a raging post-operative infection. His family claimed he had not been adequately informed of the risks.
The tragedy, says Dr. Timothy Pruett, the UVA transplant surgeon who performed Vest's surgery, and the attention Hurewitz's family brought to the issue, "changed the way we do living donors."
In the wake of Hurewitz's death, a government agency– the Advisory Committee on Organ Transplantation (ACOT)– issued a set of guidelines for hospitals to follow when using live donors. Among those recommendations is adding "donor advocates," whose sole responsibility is the well-being of the donor. UVA added a donor advocate team of physicians, a psychologist, and a social worker in early 2002.
Among other donor safeguards is an "escape clause" that allows the donor to change his or her mind– at any time and for any reason. Should this happen, it is the surgeon's responsibility to tell the potential recipient that the donor is not a good match and that the transplant is not possible.
That situation has not arisen locally so far, says psychologist David Waters, the donor advocate psychologist who screens many potential donors at UVA. Waters says most of the donors have put plenty of thought into donating and are doing it for the right reasons.
"Mostly," says Waters, the decision to donate is "on the up and up, noble and good."
In a small percentage of cases, however, "the [donor's] story just doesn't add up."
If there's any sense of coercion, says Waters, the donor should not go through with the procedure. In addition, it's Water's job to sniff out any "nefarious motives." Those include things like "being a hero or being the best Christian ever," he explains. There's also concern about any financial deal in which a donor is paid for his or her organ.
Is the buying and selling of organs a significant issue in the U.S.? Probably not through any hospital, says Dr. Pruett, who believes the overwhelming negative publicity such a venture would garner is enough deterrent to squelch a thriving organ black market.
But, he acknowledges, "Whenever there's a need, there's a chance that will happen."
And for those who cannot find a family member or friend willing to part with an organ, Pruett points out that some other countries don't have the same compunctions about buying and selling organs.
"If you have money," he says, "you can go to Turkey, Iran, or China and get an organ."
Tarpley, like the majority of would-be donors, passed the psychological screening. Surgery was scheduled for January 8.
"I was nervous," she says of the months leading up to the surgery. But for her, she says, "the benefits far outweighed the risks."
For the other members of the Vest family, the day of the transplant was "really overwhelming," says Xannie. Having just one family member in surgery is "so scary," she says. "When there's two, it's mind-blowing."
Tonchie Vest still chokes up when recalling the day he spent outside two operating rooms.
"It was scary," he says. But his belief in the doctors and nurses performing the surgeries carried him through: "I have such faith in those people," he says.
He recalls an upbeat Tarpley joking as she was wheeled into the OR. "I guess this means I've got babysitting for life," she teased her worried dad.
Tarpley's kidney was detached laparoscopically by Dr. Robert Sawyer, a member of UVA's transplant team. Once the organ was separated, Dr. Sawyer removed it through a Caesarian-like incision at the bottom of her abdomen.
In an OR across the hall from Tarpley's, Andrea Vest was prepped and her abdominal cavity opened. As soon as the kidney was out of Tarpley, Dr. Pruett took over and transplanted it into her mother. Unlike a heart or lung transplant, where the organs must be placed in a very specific spot, kidney transplants require only a good blood supply. Pruett was able to place the new kidney at the front of Vest's abdomen right next to the original transplant. Because her mother's kidney is still somewhat functional, Pruett left it in place.
"I'm very unusual to have my mother and daughter inside me," says Vest, who says she's "overwhelmed" by that thought.
Once again, Vest's surgery was a success.
"Tarpley's kidney started working right away," says Andrea Vest. "That's what you want."
Though Vest will have to take anti-rejection drugs for the rest of her life, she says that's a small price to pay for continued health and the ability to stay involved in her daughters' lives. Xannie, who lives in New York, is getting married in June, and Vest says she's looking forward to attending the big event in good health.
Xannie took a month off work from a 9/11-based nonprofit, Windows of Hope, in order to care for her mother and sister during their recovery. Although her kidney wasn't chosen, she says she was glad there was a way for her to feel involved. And she says it's hard to believe her mother and sister have just been through major surgery.
"I'll be talking to my mom about trivial [wedding] details," she says, "and I can't believe we're talking about something so minor, and she has the energy to do it!"
Tarpley says she'd do it all again "in a heartbeat," and she hopes others will consider becoming living donors for their own ailing family or friends.
And she says she's not surprised that both her and her mother's surgery and recovery went so smoothly- after all, her kidney first formed while in her mother's womb.
"It seems really normal to me that my kidney would go back to my mom," Tarpley says. "It probably recognized her."
Andrea Vest's mother donated a kidney 35 years ago.
PHOTO BY JEN FARIELLO
"It's such a blessing," says Andrea Vest, with daughter Tarpley Gillespie, who donated a kidney to her mother.
PHOTO BY JEN FARIELLO
Andrea Vest with husband Tonchie.
PHOTO BY JEN FARIELLO
The family poses at Tarpley's September 2002 wedding to Scott Gillespie. Xannie Vest (right) took a month off work to care for her mother and sister. (Tarpley and Xannie both wanted to donate a kidney to their mom.)
PHOTO BY JEN FARIELLO
Dr. Timothy Pruett performed Andrea Vest's second transplant.
PHOTO BY JEN FARIELLO