A test of faith in strangers
Jenna Franks needs a new kidney but is too far down the transplant list. Her mother’s Internet plea brings frustration, disappointment, hope.By Alan Zarembo
Los Angeles Times Staff Writer
December 30, 2006
THERE are a billion people on the Internet, and perhaps someone, somewhere, had a kidney to spare.
"19 yr. old daughter needs O kidney," Karol Franks typed, specifying the proper blood type.
Her eldest child, Jenna, had a rare defect that destroyed her kidneys. She had been undergoing dialysis for more than a year, tethered to a machine three days a week, three hours a day, to filter toxins from her blood.
Exhausted after each session, Jenna usually retreated to her bedroom. "I'm fine," she would tell her mother before climbing the curving staircase of their spacious home.
Her daughter's youth was slipping away, Karol thought.
No friends or relatives were found to be acceptable matches for a transplant. Kidneys from cadavers are allocated primarily to those who have waited the longest, and Jenna was at least five years from the top of the regional transplant waiting list. Karol thought of getting an organ from one of her other children, but at 16, 14 and 9, they were deemed too young to donate.
With no alternatives, Karol last year turned to the Internet, though she couldn't imagine why someone would want to give a kidney to a stranger.
Money, guilt, salvation?
Karol continued typing: "Please consider donating a kidney so she can get off dialysis."
Her husband, Ed, was skeptical. He didn't place much hope in the Internet, full of scammers and kooks.
Disabled by a back injury, Ed was often resting in his room. Down the hall, Jenna was quiet in hers.
Karol remained alone downstairs at her computer.
"We are in Pasadena, CA. Thank you from a very grateful mom," she concluded and posted her message on the website
http://www.livingdonorsonline.org . The return address: kidney4jenna@yahoo.com.
She said nothing about it to Jenna.
Being on dialysis is like someone hitting the "pause" button on your life, Jenna said.
She was 15 when doctors determined that her kidneys were failing, the result of pressure in her urinary system from an inability to sense when her bladder was full.
At first, Jenna refused to accept that she was sick, stashing her medicine in her dresser until the housekeeper found it and told her mother. As Jenna grew more lethargic, her defiance waned.
At the dialysis clinic, Jenna was always the youngest patient. Flopped in a padded recliner, she usually placed a pillow over her face and fell asleep.
All around her were patients who had been on dialysis for years. That was her future, she imagined.
Karol, now 52, urged her to meet other teenage kidney patients. Jenna didn't see the point.
"That is my way of dealing with it — not dealing with it," Jenna said.
Karol gave up trying to talk to her daughter about a transplant.
In an office next to the dining room, she searched the Internet for a donor, advice or just somebody to talk to.
The statistics were depressing: more than 60,000 people in the U.S. waiting for kidney transplants. The list grows by nearly 5,000 patients a year.
Fewer than 17,000 kidneys are transplanted annually. Most come from accident and stroke victims or living relatives.
About 1,500 a year come from other unrelated donors, mostly family friends.
A tiny portion — no one knows how many — come from strangers, increasingly found on the Internet.
Many doctors feel queasy about such donors. Selling organs is illegal in the United States, and they worry that patients and families will buy organs from people desperate to sell — especially from abroad — or accept them from crackpots desperate to give.
In recent years, it has become easier to find donors through websites set up for people looking for organs.
Once a deal is struck, it is not uncommon for people to pose as old friends to avoid raising suspicions from the hospital.
Karol asked herself: Was she willing to lie? Would she pay for an organ? What would she be willing to do to persuade someone to give away a kidney?
Subject: i can donate
It can be some dificulties but i can donate to your daughter one of my kidneys, i'm 44 o+ good health, living in mexicoThe e-mails — some in faulty English — began trickling in the day after Karol posted her plea.
Subject: We need money to cure my kid $ 30 000! I am ready to become a kidney donor.
Dear, Sir/Madam!
I will send my kidney! Kidney on sale! … My age is 22, weight — 68 kg., height 175. Absolutely healthy. I live in Ukraine.another...
Subject: POTENTIAL DONOR AVAILABLE
Hi! I am 28 years old, a single mother of an 7 year old boy named Josh…. We are called Jesus Christians. We try to follow the teachings of Jesus Christ and practice these teachings in our everyday lives, which is why I am writing to you now.Karol pondered each message, forwarding some to her husband. Ed, now 54, had a doctorate in public policy and had been a financial analyst — the family pragmatist.
He knew about hope and disappointment. In the seven years since injuring his back in a skiing accident, he had seen dozens of doctors and undergone four surgeries to relieve the constant pain. Nothing worked.
The e-mails seemed only to confirm everything he believed about the world. "I was very worried that some con man would take advantage of the situation," he said.
He responded to his wife from a laptop in bed: "No." "No way." "Wacko."
Karol knew he was probably right. But she still thought of each new e-mail as a possible kidney for Jenna.
One message stood out. It was longer than most and exuded a sincere desire to help. In fact, the sender said that he had already started testing in hopes of donating in his hometown, Salt Lake City — through a program in which the hospital chooses a recipient from its waiting list.
Subject: Possible Donor
The reason I'm pursuing other possible recipients is because while my act is totally of an altruistic nature I still have the need in some small way to know that someone very deserving and most importantly very in need will receive my kidney. I am 39 years old, blood type O- and in good health.The message, which arrived May 1, 2005, was unsigned, but Karol could see from the e-mail address that the sender's name was Steven.
She responded an hour later: "I am grateful that you wrote and I admire what you are doing."
It seemed Karol was always on the Internet, searching.
Ed worried that she was becoming addicted. After years of trying to heal his back, he understood the obsession to find a cure.
But he feared his wife's quest was straining their marriage.
Karol felt alone. She began to confide in Steven, a medical courier and practicing Mormon with two children.
"I am fine most days, I have an optimistic nature, but it is just a very frustrating path and I stumble sometimes," she wrote.
Subject: Friend from Salt Lake
Karol, I realize the ups and downs of this whole process for you. You will have your hopes as high as a kite one minute and down in the dumps the next. I can assure you that I will do everything I can to help your daughter.Karol didn't know what to make of people who seemed to genuinely want nothing in return.
"Are they missing something?" she wondered.
Mostly, she came to realize that everybody wanted something, tangible or not.
One Kentucky woman was hoping to move to California with her daughter and, it turned out, was offering her kidney to anybody who could set her up with a job and a house — preferably near the beach.
Many of the messages came from people overseas seeking money.
Subject: kidney
"30 years old male from israel in perfect health condition, blood type o+ is willing to sell a kidney…. my availability to arrive anywhere in the world is allmost immidiatly [I have 2 passports, one of them is german-it means that i dont need any visa to most of the countries].
Karol asked Steven what he would make of some of the e-mails offering organs for sale. It was a way of letting him know that if it was money he wanted, she wasn't interested.
Subject: Friend from Salt Lake
I can't even imagine the frustration and disgust you must experience in reading a posting trying to negotiate the price for kidney to save your daughter. The sad truth is it is becoming more and more common. Human greed knows no boundaries and I think that is the main reason behind what I am trying to do.
Karol offered to tell Steven anything he wanted to know about Jenna.
He wrote back: "I would never put you as a parent in the position of trying to sell me on why your daughter is more deserving than another individual."
Still, Karol worried about how to present Jenna to the world.
She set up a Web page for potential donors —
http://www.xanga.com/i_korn — and posted a photograph of Jenna as a toddler wearing Mickey Mouse ears. She also included a recent shot of her at a charity debutante ball.
Pretty and slight, Jenna was a bright face among the older patients advertising online.
Some of Karol's friends said Jenna appeared too happy, leading Karol to add a picture of Jenna hooked up to a dialysis machine, an empty look in her eyes.
Jenna had only an inkling of what her mother was doing — and Karol didn't tell her about Steven, who was quickly becoming her biggest hope.
Jenna hated that her mother wanted everyone to know she was sick. All the sympathy didn't bring her any closer to a kidney.
She had always been something of a loner. Now, she spent hours each day in her room playing an Internet adventure game incorporating Japanese anime. She took the character of a cute schoolgirl with a hulking sword strapped to her back.
Jenna never mentioned kidneys to her virtual friends.
Sometimes, she said, she thought about what she would do if she finally got a transplant. Maybe she would go back to school, get a driver's license, rent an apartment, even visit New York.
But she feared that a surgery could not solve all her problems. She had never done well in school. She'd never had to work or known what she wanted to do in life.
"I've just been worried that I've been using this whole kidney thing as an excuse for not doing anything with my life," she said.
After many e-mails, Karol and Steven took the next step: contacting the transplant coordinator at USC, where Jenna was on the waiting list. They knew he had the right blood type, but they needed to see if Jenna's immune system was compatible with his.
Karol had been warned that some hospitals might turn down transplant candidates who advertised for kidneys.
She and Steven agreed to tell USC the truth about meeting on the Internet.
"I hope that we can become friends and there will be no question as to the 'how and why' of it all," Karol wrote.
"Karol, there is no need for us to be 'strangers' even though we have never met," he replied. "We are both human beings, loving parents and looking to help someone else other than ourselves. I think that makes us closer in some ways than individuals I have known my whole life."
USC eventually asked him to send his complete medical records.
He promised to do it, despite his complaints to Karol about the suspicions that hospitals had of donations from strangers.
"If I consciously and willingly make the informed decision to donate a kidney to save the life of a person I'm required to jump through hoops without end," he wrote.
Getting Steven's kidney for Jenna seemed so close now. Karol worried each time a few days would pass without a new message from him.
After one brief lapse, she dashed off an e-mail: "I am running out now — driving kids to school. Just thought of you, wondering how you are doing."
Six weeks after their first e-mail exchange, Steven sent a note saying he had to put his plans on hold for six months. His doctor in Salt Lake City, he said, wanted to monitor a mild liver condition.
Karol kept searching for donors as she began counting down six months.
She could wait if she had to. She had no choice.
Steven had been thinking about donating a kidney for a decade, ever since seeing a brochure during one of his frequent appointments to donate blood.
Over time, it became "a compulsion inside of me," he said in an interview in Salt Lake City.
He could not explain his motivation easily. It just seemed that if he had the power to help somebody, he should.
He spent months exercising — walking about five miles a day — to lose 60 pounds and resolve his liver problem, a fatty inflammation related to his metabolism. With 178 pounds on his 6-foot-4-inch frame, he thought he looked too thin in the mirror, but he hadn't felt better in years.
Finally, he got clearance to donate. He arranged for time off from work.
His wife, Nora, a school cafeteria worker, supported his decision. He told her it was something he had to do — to give his right kidney to a young woman he had never laid eyes on.
He waited for her in a hospital conference room for their first meeting. He introduced himself: Steven Paul Crump. They hugged awkwardly, and he kept thanking her for the chance to donate.
The surgery took place the next day.
The recipient was not Jenna Franks. It was a woman from Utah.
Nine days later, Steven was recovering at home when he got an e-mail from Karol. "I just thought I would write and say hello," it said.
He replied the next day: "I'm hoping that Jenna is still doing as well as can be expected."
It had been just a month since he had told Karol — falsely — that his donation plans were on hold. He knew the truth would be difficult for Karol and could not bring himself to tell her.
"I had been as honest as I needed to be," he said later in an interview. "Anything else was to spare her pain."
Four months passed before Karol found out. She had held off on contacting him, not wanting to be a bother. When she did, he finally told her.
"I hesitated in letting you know for some still unknown reason," he wrote. "Maybe I felt guilty because I wasn't able to help your daughter or maybe I thought you might think 'fantastic Steve, but what does that do for Jenna?' I wouldn't blame you for feeling that way."
Karol felt betrayed. She pored over all their messages. There were dozens of them. Maybe she had misread them.
The e-mails seemed clear. "I am in this for the long haul," Steven had written. "No second thoughts whatsoever and if I could do it this afternoon I would."
For the first time, Karol mentioned Steven to Jenna, who didn't know what to think.
To Ed, the news seemed inevitable. "I didn't really think it was going to work out anyway," he said.
In an interview, Steven said he understood Karol's desperation but not the wrong she felt. He never promised anything, he said. He was simply paving the way to donate to somebody.
"It is my organ," he said. "I do think I have some obligation to myself that if I am going to give that gift, I have some say in who it goes to."
Jenna was just one possibility.
Steven also had been corresponding with a young man whose girlfriend in Sacramento needed a kidney.
Steven had contacted her transplant program as well.
But he made no headway with either hospital. He said he felt he was being treated as if he were doing something wrong.
He wanted USC to arrange a blood test to see if he was genetically compatible with Jenna.
Frustrated that the hospital wanted medical records first, he never sent anything.
Then, LDS Hospital in Salt Lake City, where he had originally expressed interest in donating, called to say there was a match for his kidney — a 33-year-old mother of four who had been waiting for five years.
Her immune system was highly sensitive, making her an extremely difficult match. Steven's kidney was perfect.
He was moved by her story.
Steven "is a hero not only to me but also to my children," said Wendy McDonald as her boys ran through the house in the small town of Enoch, in southern Utah, where she is finishing a degree in education.
"He thinks about other people before himself," she said. "He is very Christlike."
She has stayed in touch with Steven and his family — though she said he sometimes seems distant and reserved.
When they talk, he always asks how the kidney is doing.
It took months before Karol could bring herself to begin trading messages with potential donors again.
Strangely, she felt herself drawn back to Steven. She realized that she had never learned his last name or heard his voice.
But, she told him in an e-mail, she didn't want to repeat her mistakes with a new potential donor, a woman from Houston.
She and Steven hadn't corresponded in four months, but he answered the next day.
Subject: Re: Salt Lake City
Karol, there is nothing that you said or did that made me decide to donate in Utah. You are a well spoken and considerate human being. Your interaction with this individual from Texas will relay the same feelings and sincerity I was so taken by.Karol switched transplant programs — Scripps Green Hospital in La Jolla seemed more receptive to Internet matches.
The woman from Houston, a devout Christian, flew out to undergo final tests. Jenna refused to meet with her, saying she'd wait until the donation was certain.
When the woman turned out to have a rare kidney defect, Jenna wondered if she had jinxed the deal: "Maybe God was saying, 'If you're not even interested in meeting her why should you get her kidney?' "
In September, Karol began corresponding with Patrice Smith, a 44-year-old secretary from Wooster, Ohio, who said she was inspired to donate after reading an article in her local newspaper about a man who needed a kidney.
She was scheduled to donate to him, but it turned out that their immune systems were incompatible.
Patrice figured she could help somebody else.
She was a mother of four, a marathon runner and long-distance swimmer. In some ways, she said, donating a kidney might simply be another test of her physical and mental strength.
Mail-in blood tests showed she was a match.
But the transplant team wanted to meet her to quell any skepticism that she was being coerced and to make sure she understood the risks.
Jenna and Karol met Patrice last month in the lobby of the Radisson Hotel in La Jolla.
Jenna worried that it would be an audition, that she would say the wrong thing. But at dinner, Patrice's easy manner erased her fear.
"I feel like this is actually happening — this transplant thing," 21-year-old Jenna said after dinner. "I've been worried about getting my hopes up."
Ed had come around too: "If [Karol] had listened to everything I said, we probably would not have made contact with Patrice."
The transplant is scheduled for Jan. 16. Karol posted the good news on the website.
But she still checks her e-mail, just in case. There have been more than 75 messages from more than a dozen countries since she first posted her appeal.
They keep arriving.
Subject: hi!
HI! My name is mario! i am 23 years old! i am in very good health! I am O+! i lost my mother 4 months ago! i really wanna help you! All i ask in return is to have a familly again!alan.zarembo@latimes.com
http://articles.latimes.com/2006/dec/30/local/me-kidney30COLUMN ONE
Unpleasant pause: Jenna Franks, with mother Karol sitting, undergoes three hours of dialysis. It’s like someone hitting the “pause” button on your life, Jenna said. (Mark Boster / LAT)
Solititude: Jenna Franks spends a lot of time at home in Pasadena in her bedroom. She sometimes thinks about what she would do if she finally got a new kidney. (Mark Boster / LAT)
Possible donor: Steven Crump had for a decade wanted to give a kidney. (Mark Boster / LAT)
...........................
~Karol
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