Anatomy Of An Activist
This Reno Ice Skater Wants To Get Her Hands On Your Organs
by D. Brian Burghart
When Hillary Schieve's heart stopped, her kidney was the last thing on her mind.
My heart stopped, they called 'Code Blue' and my mom was like, 'Goddammit, no, you're not going anywhere; if you go I'm going with you.' She was the psycho mom who totally watches out for her child. It was totally amazing, says the 26-year-old Reno native.
Those ticks of the second hand when a person's heart stops beating are often defining moments. If the heartbeat returns, you've had a near-death experience; metaphysicians would say you've been born again. If the heartbeat doesn't return, that's it; you're dead.
When Schieve's heart restarted, she was indeed born againas an activist. Schieve is active in raising awareness, advocation and promotion of organ donationsa field that is both individual and national in scope. Decisions to donate body parts are as personal as can be, but the forces that govern who gets donated parts are national or even international.
Many Reno residents may have recently seen Schieve on the ice-skating rink downtown; in addition to being an activist on organ donor issues, Schieve is a professional skater. She was temporarily training on the downtown rink while the rink at the Convention Center was being repaired.
Schieve may have her biggest impact on the lives of organ transplant patients. She uses her skating skills to spread awareness about inequities in the organ transplant business, which makes millions for hospitals nationwide and sometimes favors the powerful over ordinary people who need livers, hearts and kidneys.
Skating On Thin Ice
What preceded Schieve's birth as an organ-transplant activist was her birth into the world of skating.
We went on a big trip to Sun Valley, Idaho, and I was supposed to be skiing, but I saw someone skating and I was like, 'That's what I have to do.' I fell in love with it immediately. I was 8, she says.
Her skating career seemed to progress from that point as smoothly as a blade on ice.
She practiced for competition at Meadowood Ice Arena and Squaw Valley rinks, and after a couple of years, she went to a training camp where Carlo Fosse saw her. Fosse, who died last year, was the internationally renowned figure skating coach who trained champions Peggy Fleming and Dorothy Hamill.
He saw my skating and he said to my mom, 'If you ever decide to move, I'd like to bring your daughter to Colorado Springs and train for a while,' Schieve says.
She was a natural, her latent grace and vivacious personality projecting across the ice.
It was real easy for me, it was real natural, and it was something I loved to do, she says. So we moved there and trained for like five years and then while I was there, I was moving up in the ranks. I was Nevada State Champion, and I just wanted to win the nationalsI won Novice National Champion, which is the best you can be at that age. And I aspired to go and skate internationally.
But with all the medals and professional estimates of her potential, those aspirations were to be chucked into the closet with her skates a few years later as a series of mysterious illnesses forced her off the ice.
I was training heavily when I noticed that something was wrong with my body. I was tired all the time, but people around me would say, 'Oh, you're too young to be sick,' or 'You're just training too hard.' I was 15.
The discipline of skating was too much, so Schieve took nearly a year off to recuperate.
I went back and tried to skate again, and my body couldn't take it and I continued to get sickevery other month I got sick. Tons of colds and flus, she says.
It went on for year. Nobody knew what was wrong with me and everybody said, 'You're fine, you're fine.' So I had my tonsils taken out. I'd had strep throat, and no one knew about it, so I didn't get antibiotics and it attacked my kidney, she says.
Soul On Ice
That diagnosis was down the road. Schieve thought she was off the ice for good, the rigors of training just too much for her fragile health, so she went to Arizona State University to study acting. She was 18.
I went there two years, and I came home for Christmas, and I was sick. I was done. Something was definitely wrong. I mean, I looked like death. And finally, after five doctors, one doctor finally did an urinalysis, she says.
The results weren't good. Significant amounts of microscopic blood and proteins were present, indications of severe kidney disease.
So her family physician referred her to another doctor, a kidney specialist. A biopsy was performed and confirmed the worst: IgA Nephropathy.
The specialist told her her kidneys would probably someday fail, and that she didn't have a lot of optionseventual dialysis and replacement. I'm thinking, 'Oh, my God, I need a transplant. What kind of lives do people live? Are they normal?'
I was 21. I didn't know anyone who ever had a transplant. You just hear about it and how frightening it is. I was like, 'This is unbelievable.' But on the other hand, I was thinking, 'Well, now that they know what's wrong with me, maybe I can go back to the ice.'
That wasn't meant to be. In an effort to run away from her illness and figure skating, and to get on with her life, she moved to Los Angeles. She was sick of being sick, but couldn't do anything about it. She slept a lot.
I was there for a month before I woke up one morning and I couldn't breathe, she says. I drove myself to the emergency room.
Doctors took an X-ray. Her heart was surrounded by fluid that was causing congestive heart failure. Her kidneys had already shut down. Again, the news was terriblethe transplant that doctors had told her was 10 years down the road was needed immediately.
They told me, 'You're so sick; your kidneys are so gone; you need a kidney right away. Anyone who can fly down here and get tested needs come down and see if we can match them with you,' she says.
Her mother Bobby, younger brother Noah, older sister Grady, and younger sister Amanda, all came down to UCLA Medical Center to be tested for possible blood and genetic matches. Her father, who was divorced from her mother, sent blood down. They were tested to see if any were physically similar enough to give Hillary the kidney she desperately needed.
That was really incredible, she says. You find out who is willing and ready to step up to bat for you. They're willing to put their life on the line for you, and that's also really hard because you don't know if you want to put your family at risk.
The stopgap measure for people without kidneys is called dialysis. Essentially, dialysis is a machine method of artificially filtering toxins out of blood. Those with long-term expectations of dialysis several times a week are hooked up to the machine through their arms. In an emergency situation, such as Schieve's, a catheter is placed directly into the heart. Two days after being admitted to the cardiac unit, in January 1995, she was hooked up to the machine that was supposed to save her life.
And that's when Hillary Schieve died.
For the 20 seconds that Schieve's heart was stopped, she was a common statistic. An average of 10 people a day die waiting for an organ transplant. To get to the heart of the matter, there are about 54,000 people waiting for transplants, according to United Network for Organ Sharing (UNOS), the nonprofit contractor that handles organ dispersion for the United States. There were fewer than 6,000 donors last year.
The breakdown on the waiting list goes like this: There are 38,387 people awaiting kidneys; 9,659 awaiting livers; 355 awaiting pancreases; 85 awaiting pancreas islet cells; 1,598 awaiting kidney-pancreas transplants; 100 awaiting intestines; 3,893 awaiting hearts; 239 awaiting heart-lung transplants; and 2,688 awaiting lung transplants (UNOS policies allow patients to be listed with more than one transplant center, which is why the number of registrations is greater than the actual number of patients).
UNOS came under fire nationwide when a five-part series of articles came out in the Cleveland Plain Dealer a year ago, with allegations that its monopoly on donations keeps the the organ supply unnaturally low.
The Plain Dealer series, among other things, alleged that U.S. transplant centers turn down many of the donor organs they are offered, often for non-medical reasons, such as the unavailability of doctors, or because doctors were too busy. The series also pointed out the large disparities in waiting time for transplants based on geographic area, for example, according to the Plain Dealer, the median waiting time for a liver in San Francisco in 1995 was 473 days. The median time at one center in L.A. was 87 days. The newspaper also said that low-volume centers had lower survival rates. In other words, with some exceptions, the fewer transplants a center does, the higher the likelihood of death for the recipient in the first year.
There is only one transplant center in Nevada, at the University of Nevada, Las Vegas. It's less than a year old, and statistics weren't immediately available.
When they say the organ allocation process is fair, it's not, says Schieve. When celebrities get organs, well, I have a hard time looking at Mickey Mantle and believing that they [missed cancer]. Mantle had cancer, and generally, transplants aren't given to people who have other illnesses such as cancer. But Mantle received a liver anyway.
When you go in for a transplant, they test you so extensively that they had to have known that he had cancer before they gave him a liver, Schieve says. They test you up and down. They wanted to save him so bad because he's Mickey Mantle that they gave him a liver and then they tried to put him through chemo. The system is not fair.
UNOS has a different point of view. It blames the huge numbers of deaths of people waiting for transplants on the lack of donations.
According to its Web page (www.unos.org): The tragic truth is, despite continuing advances in medicine and technology, the demand for organs drastically outstrips the amount of organ donors. The numbers tell the stark story. For instance, in 1996: There were 5,416 cadaveric donors; 20,360 life-saving transplants; 50,047 registrations on the waiting list; and 3,916 people who died waiting.
Schieve sees it differently.
What's in it for the donor? What's in it for these families? They don't get a tax break; they don't get a burial service. Here's the organ procurement agency: They take the organ, they make money off of it. They turn around and sell it to the hospital and they make money off of it. What does the donor get? Nothing. And that's why the system fails, she says. There's no incentive. Obviously, you can't say 'Oh, we'll give the family $50,000,' because people would be knocking each other off. But why couldn't they give tax breaks? Why couldn't they give burial services?
Slowly, government seems to be noting problems, as evidenced by a three-pronged White House initiative designed to increase organ donations and availability, called the National Organ and Tissue Donation Initiative. Vice President Al Gore announced the program late last year.
Virginia Reese, the transplant coordinator for the northern Nevada area through the California Transplant Donor Network, the Organ Procurement Organization for the area says, UNOS affects everyone everywhere because they are the national agency over all transplants everywhere. I think that the good news is that we are in one of the most active areas in the country for organ procurement and placement. The real bottom line is that there are so many people who need organsthere's a real disparity between need and availability.
While nobody is dying to bequeath their organs, they usually have to. Luckily, in cases like Amanda and Hillary Schieve's, they don't.
Have A Heart
My sister, Amanda, walked into my room, and she started crying. And I looked at her and I started to cry and she said, 'Guess what? I'm going to donate the kidney.' And she was so happy. I was like, 'Oh, my God.' And still, it's the most amazing bond. You can't even imagine, she says, shaking her head at the memory.
Amanda turned out to be a nearly perfect donor for her sister. Five of six blood antigens matched. Hillary returned to Reno to do dialysis here, near her family, which allowed time to get strong for the surgery, which was done at Stanford Medical Center three months later.
It's really easy to do when you love somebody, says sister Amanda. Hillary and I have a really close relationship. It's very gratifying. For the first week, you're in a lot of pain, but it gets better every day. I live a totally normal life. I don't take medication, I don't feel like I'm missing anything. It's interesting when you lose a kidneythe other takes on both loads. It actually grows.
I was really lucky it was so successful, Hillary Schieve says. I went through one rejection period after the transplant when I lost all the nerves in my armI couldn't move it for six months. I stayed a year in San Francisco because of the rejection, to be monitored. Then I got hired by Dorothy Hamill [for her show]. I came back to the ice after a year.
If the story ended here, it would have been a fairy-tale ending. Schieve returned to competition in April 1996she now trains two to three hours daily on the ice and about the same time with cardiovascular and ballet. She competed at the United States Adult National Figure Skating Championship in Lake Placid, N.Y. She took the silver medal. Last year, she took the bronze in the same event.
However, a fairy-tale ending was not meant to be. Horribly, ironically, Hillary was faced with the same decision that other families of organ donors agonize over, when her mother suffered a massive stroke from a brain aneurysm and the doctors wanted to take her organs. Can the family assume the brain will not recover and donate the organs in time to help someone they don't even know?
When they brought her in, she was already paralyzed; she was already blind. She was totally unconscious. She looked dead. It was one of those thingsshe was only 49, and I get this call to come in off the ice to say goodbye to my mom, she says.
When Schieve got to Saint Mary's, she did not expect to find her mother alive. She'd been called from training on the ice at the Reno-Sparks Convention Center, and on the phone officials had said some decisions had to be made and they needed to talk about organ donation.
Against all hope, her mother was alive, although doctors weren't optimistic about her chances for survival. Her mother's husband was against doing the surgery, apparently fearful that she would end up in a coma or surviving with nothing left of her mind. They'd been married only a year.
The doctor said that she wouldn't recommend this for her own family member because it was such a bad bleed. It was such a bad stroke. She's like, 'Her chances for surviving through this brain surgery is just so nil.'
So here I am living on the other side of organ donation. But my mom and I had talked about it, and that was something she had wanted. But when she was lying thereI thought, 'I need a sign from God or something. Should I be doing this? What if she does live like a vegetable?' The thing we were worried about is that she could understand what you were saying, but she couldn't tell you.
Hillary's sign from God was as simple as the surgeon's name: Hillary Fleming. She fought with her mom's husband until he agreed to go ahead with the surgery on her mother's brain.
She survived the surgery, and she was in there for three months. And now she's learning how to read and write and walk again. But this is a much longer process. This is going to be years. People who have strokes, it takes a long time. She's coming along, and it's only been a yearfor a brain injury that's not very long. There are times when she's different, but she is? still my mom. It's weird.
She's a miracle. She wasn't supposed to walk, talk or ever see. She's learning how to write and read againit's really frustrating.
Give Till It Hurts
Schieve quite literally wears her heart on her sleeve.
Her activism got its start from a bad experience with a nonprofit organ group that was supposed to be helping others, but seemed more interested in helping itself.
Hillary started exploring ways to elevate awareness to promote organ donation on her own.
What I started to do was look at the statisticshow many people die in the U.S., and how many people get organs and how many people don't get organs. So I started looking into it and digging up a lot dirt, and I found that someone needs to speak up. Often patients don't do it because they are so sick, and so while I'm well, I feel that this is something that I really need to do and I need to make a difference somewhere.
Her activism takes several forms: She has a foundation called H.O.P.E. (Hillary's Organ Placement Endeavors) Sports; she plans to tour and perform at professional hockey events to raise signatures for the world's largest organ donor card, an Internet site where people can register if they want to donate organs.
It was the slogan she came up with to raise awareness of the the organ donor card that generated considerable controversy in the figure-skating world and the organ donor world. It was a campaign that pictured the skater with the phrase, I want to get my hands on your organ.
For Schieve, with her quirky, off-the-wall personality, it was perfect, but Reese and some hospitals didn't feel she was treating the topic with enough gravity.
They thought it was tacky, says Schieve.
But that doesn't stop them from recognizing and accepting the help Schieve gives with raising the community's awareness about organ donation.
Schieve is a common sight at the dialysis unit at Washoe Medical Center.
Justin Frazier, 17, is one of her friends at the dialysis center. He gets dialysis while he waits for a kidney.
Sometimes I wish I didn't have to do it, because it gets very tiring, he says. Small for his age, he's into pool and roller hockey. Schieve is trying to get him some gloves and a new hockey stick.
Frazier had one transplant, a kidney from a 2-year-old who had died. The transplant lasted for a year.
It failed, he says. He anticipates the next call and the rush to San Francisco. You've got to get there in four hours. In a way, I'd like to have another transplantthen I wouldn't have to worry about anything but taking my pills.
In fact, transplanted organs frequently fail, although it usually takes longer. Recipients often get two or three donations, according to Schieve.
The boy says the waiting is hard, but he only really gets down when the dialysis makes him sick. It's hard on you because it's a drastic change to your body.
This cause has a cure, says Schieve, ever outspoken. The way that organs are procured and the way the system is and the way the government handles the whole organ situationit doesn't work. It's the system that fails us. There are plenty of organs.
For many, the idea that there are enough organs to go around becomes secondary when they are faced with the prospect of no transplant and the end resultpossibly dialysis for the rest of their life for kidney hopefuls or death for people waiting for a heart or a liver. Schieve hopes that her example will give others hope.
I got active after I knew that I was doing well. I went to a support group and became good friends with the peopleone person needed a heart and one person needed a liver; a couple people needed a lung. You meet these people, and you are touched by their lives, and you grow to like them a lot. And then the next week you come back and they're not sitting there, because they died. That was my wake-up call. I was one of the lucky ones. I didn't know how lucky I was that I had a family member available. I didn't know that people waited years for organs.
People think there are two sides to mesome people look at me like I'm a really good advocate, and then other people look at melike when I said I want to get my hands on your organand said, 'Well, she's skating on thin ice.' If I have to say something controversial to get people to donate, then I will. And that's the bottom line.