Out of line?

Instead of waiting their turn on a transplant list, some patients are using Web sites to find willing donors.

By Susan Aschoff

Times Staff Writer

April 17, 2005

[Times photo: Kinfay Moroti] Registered nurse Donna Chismar assists with a cardiac stress test on Dolores Smith in March at Morton Plant Hospital in Clearwater. Smith needs a kidney transplant, and regular medical checkups are required to keep her on the waiting list for an organ

With as much dignity as a flimsy purple-and-aqua hospital gown allows, Dolores Smith patiently waits while a technician looks for a vein in her hand to insert an IV for yet another test. She is accustomed to being poked and prodded and hooked to a machine, matter-of-fact about her body's betrayal.

Even when drama might serve her, the Clearwater grandmother cannot play the pity card.

As one of more than 100 people who've posted a plea to strangers on www.MatchingDonors.com to give them an organ, hers is notably stoic:

No kidneys. Need transplant to get off dialysis.

Others are more demonstrative.

A New York man promises immortality in a documentary film he is making on transplants. Another, from California, says he doesn't want to miss his 5-year-old's soccer games.

Mary Christensen, right, a 47-year-old mother of three, donated a kidney to Jacqueline Stopani, 64, after learning of her plight on MatchingDonors. com. Stopani later died from complications unrelated to the transplant surgery. [MatchingDonors.com]

Some include a photo. Diana Phillips' glamor shot blows back long brunet hair. Paul Cardinale stands tall in a tuxedo.

"I am 37 years old. I live alone and have 3 dogs. I want a new kidney before it is too late," reads a posting by David Kleiner of Boca Raton.

Faced with a widening gap between supply and demand, people desperate for an organ transplant are increasingly turning to the Internet. A New York woman launched a cyber campaign for a lung in 2004. In Houston, a 32-year-old newlywed created www.toddneedsaliver.com and advertised on billboards.

But MatchingDonors.com is the first commercial Web site pairing living organ donors and recipients. With its first surgery in Denver in October, it fanned a heated and highly politicized national debate about what is ethical in the search for an organ.

Critics charge the Web site encourages schemers to prey on the sick, and the sick to take cuts in line, bypassing a national waiting list.

More than a dozen transplant facilities across the country have since banned surgeries involving Internet introductions. LifeLink, which coordinates transplants in 15 west Florida counties, in January told some of its 421 kidney patients that surgeries will not be done at Tampa General, All Children's in St. Petersburg and Southwest Florida Regional Medical Center in Fort Myers with donors found on MatchingDonors.com.

The national agency that keeps the waiting list for organs from the deceased condemned advertising. It is considering whether a cyberspace community is as valid as one at church or workplace as a source of living donors.

"Access to organ transplantation isn't meant to be a popularity contest. In living donations, if you have a family member or friend willing to donate, everyone gets that. If you go trolling on the Internet, there's not the same emotional pull," says Dr. Mark Fox, a professor at the University of Oklahoma College of Medicine in Tulsa and co-chairman of a national committee reviewing public organ solicitations.

Such tough ethical questions would be easier to answer if so many were not dying for help.

There are almost 88,000 people in the United States on the waiting list for a transplant.

Each day, 17 die waiting.

Looking for that special someone

While bioethicists, doctors and patients debate whether medical maladies should read like the personals, pairings from MatchingDonors.com have resulted in six successful surgeries.

Founded by a doctor and a Web entrepreneur in Massachusetts, the 15-month-old site has more than 1,500 people registered as donors and claims 2-million visits a month.

"We don't pay enough attention to altruistic people in the world," says Dr. Jeremiah Lowney, an internist in Boston and MatchingDonors.com Inc. medical director. "The common bond is they want to do good for other people."

Lowney was approached by patient Paul Dooley. Dooley makes his living from CollegeJobBoard.com, a commercial site linking employers and employees. Why not use the Web to match organ donors and recipients, Dooley suggested.

Living donor transplants began in the mid 1950s. Today more than 40 percent of kidney transplants in the United States are from living donors. It is illegal to pay for an organ. Recipients can cover a donor's travel, sick leave and other expenses. A recipient's health insurance typically pays medical bills for both.

When MatchingDonors.com announced its first transplant, it rattled a system two decades old.

Robert Hickey, a 58-year-old retired health care executive in Colorado, received a kidney from Robert Smitty, a 32-year-old truck driver from Tennessee he met on the Web site. The Oct. 20 transplant was delayed two days when Denver's Presbyterian/St. Luke's Medical Center learned how the two had been introduced. Some accused Smitty of selling his kidney. He denied it and invited an examination of his finances. Reporters found Smitty had served prison time for selling LSD and owed $8,000 in child support.

Hickey, on the waiting list for a transplant for five years, said he wasn't interested in Smitty's past.

"It felt good to see my name on the front page rather than a jail docket," Smitty told the Denver Post.

A National Kidney Foundation survey found nearly 1 in 4 Americans would consider donating an organ, while alive, to a stranger.

Mary Christensen, a mother of three who lives in a small town in Minnesota, says she was making supper when she saw a man pleading for a kidney on television news.

"I thought, "I can do this.' I strongly believe the Lord gave us two kidneys so we can donate one."

She phoned a hospital to volunteer but kept getting transferred. The easier way, she decided, was to go online. She typed in a search for "organ donation" and found www.MatchingDonors.com

Initially, Christensen planned to donate to the young man in the tux, but his transplant institution would not permit Internet matches, she says. She then found Jacqueline Stopani, a 64-year-old Arizona woman whose only kidney, donated by her brother, quit working.

"It's just like it was meant to be," says the 47-year-old Christensen, speaking by phone from her home last month, where she was recovering from the March 1 surgery. Mayo Clinic in Scottsdale, Ariz., required that the two meet in person before medical testing, so in December Christensen traveled from Winthrop, population 1,400, to spend a weekend with Stopani in Arizona.

"We just talked about everything. We still talk almost every day. It's a wonderful thing to give someone back their life," Christensen said during the interview.

A week later, on March 18, a fistula shunt in Stopani's leg used for dialysis ruptured, causing massive blood loss. She died at a Scottsdale hospital, said her son Chuck, who posted her profile last fall on MatchingDonors.com.

Decorous desperation

Every 13 minutes, another name is added to the national waiting list.

Every 90 minutes, on average, someone in the United States dies waiting for a kidney, liver, lung or heart.

Dolores Smith, 56, chose to put her kidney disease on a mental back shelf for more than 20 years. "My theory is, I didn't bother them (kidneys) and they didn't bother me."

She was diagnosed in 1981. Blood showed up in her urine. She has polycystic kidney disease. Cysts multiply in the kidneys and shut down function. A Chicago resident, she reared her kids and worked as a word processor and kept her blood pressure down. She and her husband, Kenneth, moved to Clearwater three years ago. At Christmas, the faces of their 12 grandchildren march across a bookcase, each in a holiday-themed frame.

In summer 2003, Smith's kidney function plummeted to 15 percent and she began dialysis. A surgically implanted tube creates a port for the extra-large, 15-gauge needles which pump out the blood and return it cleansed of toxins and excess fluids. Her inner right arm is purple and chartreuse, bruised from four-hour sessions three days a week.

"In the back of my mind I thought, these kidneys will come back. When they told me there was no hope . . ."

Smith put herself on the LifeLink transplant list. A-positive type blood. High antibodies. Patients on the list are in end-stage organ failure.

Her daughter Kristin, 23, wrote to Oprah Winfrey:

"My older sister (Kimberly) attempted to donate, but because of her own health issues, her doctor could not condone the procedure. . . . I would love nothing else than to donate a kidney for my mother, (but) my brother (29-year-old Michael) has inherited PKD and I will need to reserve that sacrifice for when his kidneys eventually fail."

Oprah did not write back.

Smith (her family and friends call her Dolly) signed up with MatchingDonors.com for $97 a month after a friend showed her a newspaper article.

"I heard from a guy in India who says he has many friends who would help me," she says with skepticism. Another wrote: "Hi. I am 42 yr old healthy male. I am very willing to run what ever test need to be done. I am asking for all expences(sic) and a gift of 40k."

MatchingDonors.com says it deletes messages it finds seeking compensation. Clients pay up to $295 a month, or nothing at all if they cannot afford the fees, Dooley says of the nonprofit, private company.

If a donor and patient connect - exchanging e-mails or phone calls, then deciding to proceed - medical tests, psychological screening and surgery are handled by regional transplant centers.

Smith referred several promising responses to LifeLink. Then in January, the Tampa agency phoned to say it will not perform surgeries with donors found on www.MatchingDonors.com The Web site charges fees, says LifeLink spokeswoman Ruth Bell, and has not been endorsed by the United Network for Organ Sharing, or UNOS, which oversees transplants.

"This is an issue nationally that the transplant community has got to come to grips with," Bell says. "In most instances, people who go through this process (living donation) have had a longstanding relationship."

Last year LifeLink handled 67 kidney transplants with living donors. Of those, 40 were blood relatives. The others were "emotionally related" - spouses and friends.

"Is it ethical," counters Lowney, "not to allow people to search on their own?

"We're not subverting the organ donor process by bringing new people into the system."

Now calling number 24,321

The national transplant community operates in a system established by Congress in 1984 to find and allocate organs. UNOS is a nonprofit agency under contract with the federal government to maintain the waiting list and operate the Organ Procurement and Transplantation Network, or OPTN. OPTN's membership includes transplant coordinators, hospitals, volunteers and other groups that act as local links: They find donors and transport organs to recipients matched by blood type, genetics, organ size, medical urgency, time on waiting list, and geographic proximity.

The goal is to keep the transplant system fair and fed.

"In the very early days, there was no national organization and there were very few transplant centers. It was kind of a club. The doctors talked to each other," says Dr. Richard Howard of Shands at the University of Florida. He is president of the American Society of Transplant Surgeons.

When surgery centers and patients proliferated, the government set up a national network. "It's not perfect," says Howard, "but I think it's the fairest system."

The problem is the gap between viable organs and desperate patients: Despite a record 27,000 organs transplanted last year, the waiting list increased to almost 88,000.

"We've noticed this trend," says Fox, who chairs UNOS' ethics committee, "of people using different media, from a classified ad to chat room, to find an organ. It has changed the landscape" of organ donation.

Todd Krampitz, who got the liver transplant in Houston Aug. 12 after advertising on two billboards, did multiple media interviews, often with his wife, Julie. His Web site includes a Bible verse: "With God all things are possible."

A family in another state, after seeing the publicity, donated their deceased loved one's liver specifically to Krampitz. Such directed donations are permitted. But critics say Krampitz "cut in line." When he got his liver, there were 17,000 people on the waiting list for one.

The need for kidneys is the most urgent.

Howard, a transplant surgeon for almost three decades, operated on a woman on dialysis 26 years. Most patients cannot wait that long before their health deteriorates, he says. Drugs have cut the initial risk that a patient's body will reject a transplanted organ to less than 20 percent. But almost half of those transplanted will be dead within 15 years due to loss of organ function and other complications.

A kidney walks into a bar

If Dolores Smith is almost bashful about asking for a kidney, Alex Crionas broadcasts for one. A 19-year-old community college student when he was diagnosed with a progressive kidney disease called focal segmental glomerulosclerosis, the 29-year-old has been on dialysis 20 months.

He has no siblings to donate and O-type blood.

So he created a Web site, www.selflessact.net - "You only need one," reads the headline.

He moved to Florida because the wait for a transplant here is one-third as long as in New York.

He phoned an Orlando radio show granting wishes to announce he wants a kidney.

And that was before he got a lot of publicity.

In October, Crionas says he met Patrick Garrity at a party. The 23-year-old offered to be a donor and the two were tested at LifeLink. Then communication with the transplant coordinator abruptly ceased, says Crionas. In February, LifeLink told him it would not proceed because he has a Web site, he says.

Crionas complained.

Loudly.

He's been featured in a dozen Florida newspapers and on CNN. He's received more than 200 sympathetic e-mails. He threatens to sue.

"I went to the media because I wanted to change LifeLink's mind. I wanted them to approve me."

LifeLink officials declined to comment on Crionas' case, citing medical privacy laws.

"Having a Web site in and of itself does not rule out a living donation" at LifeLink, says Bell.

Crionas, dressed in an orange polo shirt and jeans, stretched out in a recliner inches from his computer keyboard in a one-bedroom apartment in Orange City, north of Orlando, says he is being punished for initiative.

"Some ethicists imbue Web sites with some kind of hypnotic power. I think people want to donate to someone they know. Simply by reading my story, they've established a relationship with me."

He is what some experts fear: "You can't decry it (the Web) on its face, but it does give some people a leg up," says Howard of the American Society of Transplant Surgeons. He and others worry that billboards and Web sites give the physically attractive, the technologically adept, the financially flush, dibs on an organ another person needs more.

Garrity, Crionas' friend and would-be donor, says if he needed a kidney, "not only would I have a Web site but a commercial on the Super Bowl."

He works undercover security at a Winn-Dixie and lives with his grandmother in Apopka. In March he met with his Army National Guard commander to find out if he'll have to quit if he's minus a kidney. Maybe, the commander says. Probably.

But Garrity's real calling is standup comedy. He does the best Christopher Walken impression, bar none, says Crionas.

"I love being on stage," Garrity says. He jokes about the military, and dating, and, likely some day, surgery.

"Basic training sucks. You lose all your privacy," he says from the stages of Orlando improvs and a Holiday Inn in Altamonte Springs. "And why the hell do people who snore fall asleep first?"

Crionas does comedy bits, too.

"People ask me, what do you want for Christmas? I think I'd want a sharp knife and a ticket to India."

Rescue me

Dolores Smith remains cautious with her Internet debut. She does not want to reveal too much to strangers.

"Oh c'mon now," she says. "No one is doing this out of the goodness of their heart." Yet that is whom she hopes she'll find on www.MatchingDonors.com

After LifeLink said it will not handle the site's matches, Smith moved her paperwork to Northwestern Memorial Hospital in Chicago. Alex Crionas and Patrick Garrity are transferring their files to TransLife, the coordinator for the 10-county Central Florida region.

Still angered by the implication that his efforts are somehow tawdry, Crionas corrects those who use the word "solicit."

"A kidney," he says, "is not a quarter."

Susan Aschoff can be reached at 727 892-2293 or aschoff@sptimes.com

Copyright © 2005 St. Petersburg Times.

This article posted May 16, 2005.