COVER- Death defying stories: love, loss, and rushing to the hospital

Amanda Heale, a Fluvanna resident who suffered from a congenital liver defect, meets with transplant surgeon Timothy Pruett on Friday, February 13. Heale received a new liver at UVA hospital on February 4, the day after her 19th birthday. The 2008 graduate of Open Door Christian School says her health problems put her plans for college on hold. Now, with the transplant behind her, she says, "I have so many decisions to make."

Is there life after death? Forget the philosophical or religious debate: with organ donation, the answer is yes.

At UVA Medical Center, thousands of transplants have taken place since the first– a kidney transplant– was performed there in the 1967, and Dr. Tim Pruett, head of the transplant surgery department, hopes that number will grow exponentially in the future.

"It should be really, really routine," says Pruett, who'll address UVA basketball fans at the February 26 game at John Paul Jones Arena as part of the national "Get Game–Give Life" program, which aims to increase organ donation among college students and sports fans.

While the actual act of becoming an organ donor in Virginia is as simple as checking a box at the DMV or visiting the website– named for the seven organs that can transplanted– coming to terms with the concept of organs living on without their original owner can be a bigger hurdle to leap– not just for the would-be donor who has to contemplate his or her own mortality but also for family members of the donor reeling from sudden loss, then asked to make a significant decision about their loved one's remains. It can be a challenge for the recipients as well, who must cope with the idea that someone else's death allowed them to live– and that they will forevermore carry a living memento.

According to Dena Reynolds at LifeNet Health, the Virginia Beach-based organ donation education nonprofit, there are 100,000 people awaiting organ transplant in this country– 2,500 of them in Virginia. Eighteen people– men, women and children– die every day waiting, and Reynolds believes certain myths about organ donation prevent many would-be donors or their families from making the affirmative choice. Among those myths: that the donor's body will be disfigured, preventing an open casket; that certain religions prohibit the practice; that donation will pose a financial burden on the donor's family; that rich and famous people take precedence over ordinary folks on donor recipient lists; and that doctors may not try as hard to save the lives of those listed as organ donors.

None of these are true, says Reynolds. Although Judaism prohibits the desecration of the human body after death, the religion also provides an overriding law: the obligation to preserve human life. Reynolds suggests anyone concerned over religious constraints consult with their priest, pastor, or rabbi to assuage doubts.

Donors and recipients aren't the only ones who struggle with issues raised by organ donation.

While the actual surgical techniques used in organ donation have been honed over years and are now, for the most part, routine, doctors face their own set of concerns, both ethical and medical.

How should recipients be prioritized, for instance?

According to Pruett, would-be recipients are ranked based on the likelihood that they will benefit in the long-term from donation. Current smokers, for instance, would not be good candidates for a lung transplant because the new lung would likely suffer from their behavior. Similarly, actively drinking alcoholics aren't candidates for liver transplants. 

On the flip side, young people who through injury or illness need an organ replaced, are considered high priorities.

"Organ donation is not going to go up if people think we're just tossing organs around," says Pruett, "or giving them to people who are going to abuse them."

Medically, Pruett says, the hardest part of organ donation comes after the actual surgery when recipients must take a slew drugs to prevent their bodies from rejecting the new organ. Even with such drug therapy, the organ can fail, and the drugs themselves can lower immunity and even predispose a recipient to cancer.

Pruett says research is constantly leading to improvements. For instance, some studies show that injecting recipients with a mixture of their own and their donor's bone marrow can prevent organ rejection without any drug treatment at all. 

Most exciting to researchers is the promise of stem cell research, which might someday allow doctors to grow new organs that would be exact matches for recipients.

Pruett, however, says success in that area is in the distant future– more than five or 10 years away.

"Organ donation is a very strange bridge to what we should end up with if science does what it should," he says. "But in the interim it's as good as we've got."

"Hugging her is like hugging Bob," says Katy Lane, left, of Deneen Allen who received Lane's husband's lung in a 2003 transplant.

"I felt an immediate feeling of joy," says Deneen Allen of waking up after her long-awaited lung transplant.

From great loss comes life... and friendship

Twelve percent. That, says Deneen Allen, was the capacity of her lungs as she awaited a transplant in early 2003.

"I couldn't walk across the room, says Allen on a recent afternoon shopping expedition to the Downtown Mall from her home in Orange. Such a foray would have been difficult if not impossible as her health deteriorated following her diagnosis with emphysema in 1992 at the unusually young age of 42.

Allen, a smoker for 25 years, had already quit when she was diagnosed, and she says she– and her doctors– were stunned that so much damage had already been done.

By 2001, Allen's shortness of breath had grown so severe she was on oxygen and took early retirement from her job as a unit coordinator on the psychiatric floor at UVA hospital. She was also placed on the transplant waiting list and told if and when the call came, she'd need to be at the hospital within four hours to receive the lung that would give her a new chance at life.

The call came in the wee hours of November 20, 2003, and Allen was rushed into surgery.

When she awakened following the life-saving procedure, she says, "I had an immediate feeling of joy." 

After a six-day hospital stay, Allen was sent home where her joy mingled with another emotion: curiosity about the donor– known to her only as a 59-year-old male who'd died in an accident.

One year later, Allen took a step many recipients take: she wrote a letter to the donor's family, thanking them and introducing herself. Because confidentiality regarding donor's and recipient's identities is the rule in transplantation, Allen's letter– signed only with her first name– was handled through LifeNet. Soon after, a letter came in return from Katy, the widow of Allen's lung donor. After exchanging several more letters, Allen and Katy decided to meet, and did so– again, at LifeNet's Richmond headquarters.

Allen describes the meeting as "teary"– but through the tears a relationship was forged that has helped Katy Lane heal from the loss of her husband, Bob.

In November, 2003 Bob Lane was helping a friend build a deck when he slipped and fell off the edge. The 10-foot fall shouldn't have been fatal, but before he hit the ground, his widow reveals, he hit his head on a post and suffered a brain hemorrhage.

Lane, a nurse, says she knew the prognosis from such a brain bleed.

"There was nothing they could do for him," she says. Coincidentally, Lane says, she and Bob had had a conversation the weekend before his accident while watching a television show about someone on life support. "He said, 'Don't you ever let me go on like that," she recalls. 

Bob had done something else: checked the organ donor box on his driver's license. 

"It was his decision," says Lane, admitting that even so, she briefly struggled with the idea that doctors would be removing his organs. "I didn't want anyone to touch him, to put him through anything else," Lane recalls. Her doubt didn't last.

"It took me about 3 minutes to realize that if it would help someone then we should do it," she says.

Since their meeting in 2004, Allen and Lane agree, the bond forged between the two women has been powerful– and has helped carry them through hard times, including Allen's battle against breast cancer– something she believes may have been related to the anti-rejection drugs she takes daily. When Allen married her longtime boyfriend in 2008, Lane made the trip from her home in Matthews, Virginia to attend the reception. 

Because of the distance, they see each other only a few times a year, but talk on the phone regularly.

"When God loses a door, he opens a window," says Lane. Allen, she adds, "is my window." 

Five years after his lung transplant,  75-year-old Ken Neal is winning golf games and working full time.

Out of retirement

At age 75, most people are retired,  but not Ken Neal, who works 40 hours a week at Meadowbrook Hardware. And he's not complaining.

"It's a miracle I can do this," says Neal, who moved to Charlottesville from Greensboro, North Carolina in 1999 to be closer to his daughter after his wife died. Coming to Charlottesville had another benefit: proximity to UVA hospital, where almost exactly six years ago he received a lung transplant.

"I smoked over a long period of time," says Neal, who quit in 1999 when his severe Chronic Obstructive Pulmonary Disease made it impossible for him to walk "more than 10 or 15 steps without sitting down or someone helping me."

Neal was put on the transplant waiting list in 2001, and when he got the call at 7am on February 23, 2003, he was just 20 minutes away from the hospital, where, following surgery, he stayed for six days.

Six weeks later, he says, "I was driving, doing anything I wanted to do." And what he really wanted to do was play golf.

In 2004, '06 and '08, he competed in the biannual Transplant Olympics, winning gold and bronze medals. He's currently training for the 2010 games in Minnesota.

Unlike Deneen Allen, Neal says he doesn't know the identity of his donor– a 55-year-old man involved in a car accident– although he wrote a letter thanking his family for their gift.

"I didn't get a response," he says. "I never did push it. I'd like to meet them, but it's hard."

Neal says he wants them to know the depth of his gratitude.

"This," he says, "gave me a second chance at life."

"It has been so hard," says Andrea Tribastone, of coping with the unexpected death of her husband and the boys' father, Curt Tribastone following brain surgery. His organ donation and the Carl Tribastone Memorial 5k each August helps the family feel "he has not been forgotten," says Tribastone.

Race to healing

When Carl Tribastone went in for brain surgery on a benign growth in August 2004, he and his wife, physician Andrea Tribastone, didn't talk about worst-case scenarios.  After all, at age 36, financial analyst Carl was an avid hiker in peak health and the father of four young boys– then ages 5, 4 and twin one-year-olds.

"We of course hoped the surgery would go well," says Andrea Tribastone. Instead, a hemorrhage during surgery left her husband without hope of recovery– and Tribastone with a heart-wrenching decision to make over organ donation.

"The heart on his driver's license was how I knew what he wanted," says Tribastone, adding that doctors were able to transplant his heart, kidneys, liver, and some of his skin. "He saved four lives," she says.

Carl's parents, says Tribastone, had a harder time with the decision.

"That was something new for them," she says. "They were overwhelmed by it all."

Four and a half years later, Tribastone says, the decision to donate her husband's organs has provided solace in her grief.

 "It makes  me feel better knowing that his heart is still beating," says Tribastone, who decided not to learn the identity of the recipients because she feared the emotional fallout if she learned that any of his organs had failed.

On the one-year anniversary of his death in August 2005, Tribastone says her oldest son came up with the idea of a memorial race to raise funds for LifeNet. Nearly four years later, the Carl Tribastone Memorial 5K– "The Daddy Race" to the Tribastone boys– is now the eighth largest race in the area and raised $16,000 last year alone. 

The race, and knowing their father was an organ donor, has been healing for her boys as well, says Tribastone.

"We couldn't do anything to save daddy," she explains, "but he was such a good person that he saved other lives."

Five years after her second kidney transplant, "
sometimes I feel stronger than some of my friends do," says Andrea Vest, who received a kidney from her daughter Tarpley Gillespie. Since donating her kidney, Gillespie has had three children– 3-year-old Fletcher and 19-month old twins Sam and Charlie.

We are family

Few people understand the benefits of organ transplantation better than Andrea Vest. Back in 1968, when she was 23, Vest– who was born with deformed ureters, the tubes that lead from kidneys to bladder– received a kidney from her own mother. Thirty five years later, she got bad news for a second time: that kidney was failing, and Vest wasn't sure where to turn. 

Once again, she didn't have to look far. 

After extensive testing of both of her adult daughters, Vest's younger daughter, Tarpley Gillespie, was determined to be the better tissue match, and in January 2004, as detailed in the Hook's March 2004 cover story "Home grown: the gift that keeps on living," doctors removed Gillespie's kidney and transplanted it into her mother.

Five years later, Vest's health is good– as is Gillespie's. And Vest has lived to become a grandmother to Gillespie's three boys– ages three and twin one-year-olds– and her older daughter Xannie's three year-old son and three-month-old daughter.

She's also had the chance to fulfill the promise she made to her married but then childless daughter at the time of the transplant: unlimited babysitting.

"I made that promise the night before the transplant not knowing she'd have a boy and then twin boys!" Vest laughs.

Gillespie says she has had no complications from the donation of her kidney– even through the twin pregnancy. "It was a nonissue," she says.

 Babysitting aside, she says, having her mother alive and healthy is priceless.

"I can't imagine what it would have been like if she wasn't here," she says.

A mechanical pump implanted in Donald Tolliver's heart has bought him time, but for long term recovery he still needs a heart transplant.

Still waiting

Five years ago, Donald Tolliver learned that a virus he contracted sometime during his life had seriously damaged his heart. 

"It kept getting weaker and weaker," says Tolliver, who has been in UVA hospital for the past month waiting for a transplant. A pacemaker and a defibrillator helped, he says, but not enough. Eventually, he couldn't walk more than five or six feet without needing to rest.

Yet for someone in such critical condition, the 54-year-old sounds remarkably chipper. That, he says, is thanks to a device UVA doctors implanted in his chest two weeks ago to help his heart pump blood.

According to the American Heart Association, the LVAD– left ventricular assist device– is often called the "bridge to transplant" because it enables those with heart failure to survive additional months while they wait.

For Tolliver, the device has already made a huge difference. 

"I walked more today," he says, "than I have in the last three months."

Tolliver expects to be sent home to Salem, Virginia in the coming days, but he says he remains hopeful that a heart will become available in time to provide him with long-term recovery.

Because he lives several hours away, he says, when the call comes, he will be transported by ambulance or helicopter so he can arrive within the allotted four-hour window. Until then, he says, he'll look forward to doing a simple thing most people take for granted: "Just getting out and having air to breathe."