Saratoga News

Cover Story

Photograph by George Sakkestad

Audrey Sasso Stout's 19-year-old sister Sharon died in an accident in 1999, and the use of her organs helped save three people's lives and give sight to two others. Since that day, Audrey has dedicated herself to spreading awareness of the importance of organ donation, including speaking at events such as the Saratoga Transplant Awareness Night on April 6

Gift of Life

Donating an organ is the most precious gift one person can give to another

By Jennifer McBride

There wasn't a dry eye in the theater when Audrey Sasso Stout recalled the worst day of her life. The crowd listened intently as Audrey told a story both heart-wrenching and inspiring--how the loss of her sister Sharon, 19, had saved the lives of so many.

It was March 20, 1999, at 4:30 a.m. and Audrey's phone was ringing.

"The sound of my mother's voice on my answering machine [was] pleading with me to wake up ... something was terribly wrong," Audrey recalled. "When I answered the phone, my mother could barely hold back the tears long enough to tell me what had happened. She was at San Francisco General Hospital, and my sister Sharon had been in a serious accident."

Audrey later learned that her sister had suffered a bad fall. Attempting to enter her apartment from the fire escape outside her window, she had slipped and fallen three stories, hitting her head on the pavement below.

When Audrey arrived at the hospital, the doctors told her that Sharon's brain had suffered extensive damage. They had tried to relieve the pressure, but it was too severe. They didn't expect her to live past the next 24 hours.

Once the entire family had arrived at the hospital, it was time to decide whether to donate Sharon's organs.

"How strange for a family to be brought together and asked to act on a decision we never thought we would be confronted with, at least not so soon," Audrey said. She recalled a conversation she and her sister had had recently about the subject. "Ironically, we'd had a discussion about organ donation only months before, at dinner with my parents. Sharon had declared to us at that time that she would want to donate if anything happened to her. So we fully agreed to honor her wishes and donate her organs."

On March 22, at approximately 3 a.m., after being declared brain-dead, Sharon Stout was taken to surgery to remove her organs--organs that would directly affect the lives of five different people.

A 47-year-old Bay Area woman with two children, after waiting three years for a transplant, received one of Sharon's kidneys. Another woman, 42, with three children, received her other kidney and her pancreas. A 35-year-old man from Northern California received her liver, and a 79-year-old and 30-year-old were given the gift of sight again by receiving her corneas.

"It was at that moment that I realized this experience was about so much more than my sister, or me and my family. It was about the five lives that Sharon had just saved, in her time of death," Audrey told the audience. "The precious gift of life that had been given to us 19 years earlier, now went to those individuals."

Since that fateful day, Audrey has dedicated herself to spreading the word about organ donation. She volunteers at the California Transplant Donor Network, the National Kidney Foundation and the National Donor Family Council. She is also a donor family liaison for Team Northern California at the U.S. Transplant Games, an Olympic-style event that showcases the success of transplantation through various athletic events and honors the families that have donated. For the past several years, she has spoken at many awareness events; she says Sharon lives on through the lives she saved and through the telling of her story.

A night that touched many

Audrey's moving speech was part of Transplant Awareness Night, the first event of its kind to be put on locally. It took place April 6 at the Saratoga Civic Theater and drew a crowd of health-care professionals, city council members, local residents and teenagers. The event was the work of the Saratoga Youth Commission--in particular, Saratoga High School senior Kelly Burke, who spent more than six months preparing for the night.

Kelly's mother is an operating room nurse and her father, Mark Burke, runs Satellite HealthCare, a nonprofit organization that cares for more than 2,000 kidney patients. Satellite operates many dialysis centers, including one in Saratoga that serves residents from all over the Bay Area. Kelly has worked at the center with her father as a research assistant.

"I really got to see what it was like for patients waiting for a kidney and having to go through dialysis three days a week, for several hours at a time," she says. "I saw how their lives could be improved with a transplant."

In addition to celebrity speaker R.C. Owens, a former football player for the San Francisco 49ers who came to speak about his own kidney transplant, expert speakers that night included Dr. Brigitte Schiller, a clinical director at Satellite HealthCare, and Dr. Jane Tan, an assistant professor of nephrology at Stanford University who specializes in kidney and pancreas transplantation. Tan and Schiller helped to drive home the facts about organ donation and transplantation to those in the audience.

The facts

There are approximately 90,000 people in the United States on the transplant list awaiting an organ. Of those, roughly 65,000 need a kidney, 17,000 are waiting for livers and 3,000 are waiting for a heart or lungs. Another name is added to that list roughly every 12 minutes. Approximately 20,000 of these people live in California.

"This is real. That's as if all of Saratoga needed an organ transplant in 2004," Schiller said. "The number of patients exceeds the number of available organs 6 to 1."

In 2004, 27,000 people received organ transplants in the United States In fact, there are many more organs than just the heart, liver and kidneys that can be transplanted. The lungs, pancreas, corneas, parts of the intestines, the femoral and saphenous veins, skin, bones and bone marrow, and certain tendons can all be donated to another human being.

As the numbers show, kidney disease is a serious medical problem that affects millions. There are a few potential causes that have been identified. These include high blood pressure, diabetes, some hereditary diseases and strep infection, which is one of the best-known causes, but actually is not that common, Tan says.

When kidney disease reaches a certain level in a patient, dialysis is crucial. For example, once a kidney patient's creatinin and urea nitrogen levels begin to spike significantly, dialysis cannot be put off much longer.

Dialysis consists of hooking up the patient to a machine that acts an artificial kidney flushing out toxins in the blood. Blood is pumped out of the patient's body through tubes, run through the machines to be "cleaned" and then pumped back into the patient's body. Dialysis patients cannot live more than two to three weeks without receiving dialysis.

Dialysis costs around $70,000 per year, per patient. Dialysis patients constitute half of
1 percent of all Medicare patients. It is paid for out of the Medicare budget and accounts for about 71 percent of that budget.

The number of dialysis patients has risen from around 50,000 in the late 1970s to 300,000 in 2005. Schiller says that number is expected to reach half a million by 2010.

Waiting for an organ

Living on dialysis and waiting for a kidney, can be a difficult life. Just ask Bill Hughes of Los Gatos.

Bill suffers from polycystic kidney disease.

"It's an inherited disease. Your kidneys totally shut down," Bill says.

"Bill's mother and his younger brother have both died from it," says Bill's wife, Patti Hughes.

Bill has been on dialysis for nearly three years. While it keeps him alive, it's certainly no cup of tea.

"Well, considering the alternative--dying--it's great," he says. "But you don't have a lot of energy, not as much as you'd like. Most patients have to take a nap after your treatment; I do. It changes you."

Because certain foods can raise the toxin levels in the blood, Bill says he has to keep to a very strict diet.

"Anything rich in phosphorus, potassium or sodium, I have to leave out. I've had to give up dairy; it has too much phosphorus. And I have to take a pill whenever I eat, to help break down the phosphorus," he explains. "Having high sodium makes you thirsty, but if I drink too much water it changes my level of electrolytes too much. So if I give in to my desire for that extra cup of tea I would like, I can pay the price."

Bill's doctors told him in January of 2005 that his wait for a kidney would probably take around 18 months. That time is up in July. Bill says the wait is taking its toll.

"My anxiety level increases, as that time gets closer. I start counting the days, the weeks, the months," he says. "See, the devil I know is dialysis. I have a life. But the devil I don't know is dealing with organ rejection. But I'm ready for it."

Bill says the thing he looks forward to most with his potential new kidney is more energy.

"A transplant surgeon friend of mine told me 'When you get your transplant, you won't believe the level of energy you've got,'" he says. "I'm looking forward to that. You bet."

With an average of 65,000 patients waiting for a kidney at any one time, many things determine one's order on the transplant list.

The federal government contracts with an independent organization to manage the national transplant list. Organs are distributed based on how long the patient has been waiting; need or degree of sickness; and other medical criteria. For example, patients must be in good health, aside from their need for the organ. Most importantly the heart must be healthy, and the body must be strong enough to survive major surgery and recovery. On average, one in every 10,000 transplant patients will die on the operating table.

Often, elderly patients are not considered candidates for transplant. Although kidney disease patient Lillian Silversteen of Saratoga did not wish to reveal her age, she knows she is not a candidate because of her age.

However, Silversteen is not sure she would want a transplant, even if someone were to offer her a new kidney tomorrow.

"I'd have to give it a lot of thought," she says. "Three to four hours [of dialysis] a few days a week versus major surgery is more appealing."

Elizabeth Keil, a registered nurse who works at the Satellite HealthCare Dialysis Center in Saratoga where Silversteen comes each week, says Silversteen's feelings about the subject are not uncommon.

"Some opt not to have the transplant, because maintaining the organ can almost be as hard as staying on dialysis," she says.

No one knows this better than the Perez family.

Special gift

Jason Perez, 36, of Campbell has dealt with kidney problems for more than 30 years. His problems are hereditary; nearly his entire family suffers from Alport syndrome.

"Basically, it's a degenerative disease. Your kidney fails," he says. "You can't tell when it's going to happen, though."

Jason says his doctors have explained to him that females carry the Alport syndrome gene, and they can pass it to males at birth. Jason's mother and aunt are carriers; therefore, Jason, one of his two brothers and a cousin all contracted the disease. Jason's other brother did not receive the gene.

Jason says he first started showing signs of the disease when he was 6 years old. It often reveals itself by blood and protein in the urine.

"My cousin's kidney failed at 18; my brother's at 22," Jason says. "However, mine didn't fail until [around October of 2004] when I was 35."

That October, Jason's doctors told him that his creatinin levels were rising, and that he would most likely need to go on dialysis within a year. True to their word, Jason began dialysis at the Saratoga Satellite center in October of 2005. A worthy candidate, Jason's name was put on the transplant list in January.

The wait for a kidney can vary by blood type. Someone of blood type AB will wait an average of three years for a kidney. For blood type A, the average is five years. For type O it is six to seven years, and for type B, the average wait is eight years.

Jason was told he would most likely have to wait three years, unless a living donor, typically a relative, came forward.

Whenever possible, a living family donor is sought for a patient waiting for an organ such as a kidney. First, the living donor has to have the same blood type as the recipient, and the donor's blood must also be type ABO-compatible. The donor must be absolutely healthy and have no pre-formed antibodies against anything in the relative's body, says Tan. Although it is rare, it is now also possible for someone to donate his or her lung, pancreas or liver while alive.

Tan says receiving an organ from a living family donor has several advantages for the patient. Not only does it mean he or she can get the transplant faster, but studies have shown that the long-term health results are better as well.

Jason's brother Josh, the only brother without the Alport syndrome gene, decided to donate a kidney to his brother.

"We knew since we were about 5 years old that someone was going to have to donate a kidney. So it was never an issue of trying to find someone else," Josh says.

When the time came, Josh went through screening to see if he was a viable candidate to be a living donor. The screening took months, he says.

"A lot of blood testing had to be done, and MRIs, an Ultrasound so we could look at my kidney, an EKG to test the condition of my heart. Also, urine tests to determine my kidney function," he recalls.

When all was said and done, Josh was deemed a worthy candidate. The two brothers underwent surgery one month ago.

Josh says adjusting to his now-delicate condition has been a little tough. It was about two weeks until he could walk normally and attempt normal activities such as going to a movie or going out to eat.

Josh decided to return to work on April 26, two weeks earlier than the doctors had predicted.

"I was supposed to be out of work for six to eight weeks, which is what the surgeon recommended. But they said if I felt better, I could go back earlier, so I felt like I could try returning at least part-time," he says.

By the end of his first day, Josh says he was getting a bit sore. Josh says it's been a tough adjustment, since he used to bike back and forth to work, a 40-mile roundtrip. It will be months before he can even think about returning to that routine, but he knows what he did for his brother is an amazing thing.

"I owe him my life now," Jason says.

With a new kidney, Jason is not completely out of the woods, however. He now has to self-monitor his blood pressure every day, and he is currently on 13 different medications. That number should go down to three within a year, but even those three medications are extremely expensive, he says. The threat of rejecting the kidney is very real, so Jason has to take his care very seriously.

"I have to make sure I take my medications on time every day, and that I take them with me wherever I go. It's a serious ordeal; before the transplant, I had an entire team of doctors and psychologists advising me, making sure I understood what it would all mean for me," he says. "Neglect can cause rejection. You've been given a gift, so to neglect it ... that's a slap in the face to all the doctors, and the donor."

Even though Jason was lucky enough to find a living donor, he is very passionate about spreading the word on organ donation.

"It's such a great gift," he says. "You can't even imagine how much we recipients appreciate it. Donors should be commended. It's giving me a whole new outlook on life."

Jason recalls a co-worker whose 2-year-old son received a heart transplant.

"Now he has a chance to grow," he marvels. "He could be the next Einstein, the next great contributor to our community."

How many people make it a point to register as organ donors?

Tan says, in her experience, the only religion she has come across that frowns upon donating organs in the time of death is Japanese Shintoism.

Although some may think that Judaism frowns upon the practice, Rabbi Melanie Aron of Congregation Shir Hadash in Los Gatos says that is not necessarily the case.

"In general, Judaism is very respectful toward the body and doesn't believe you should profit in any way from the body or treat the body of the deceased with any disrespect. But there's an overlying principle that saving another life outweighs that," she says. "So everyone agrees, where you're saving a life, we encourage organ donation. Some people also feel that donating an organ that doesn't save a life, but improves the quality of life, such as the corneas of the eyes, is also encouraged. Even among the Orthodox Jews and in Israel recently, there have been campaigns to encourage organ donation."

Becoming an organ donor

These days, becoming an organ donor is easier than ever. The California Department of Motor Vehicles now includes instructions on how to declare one's intent to donate on the front of every driver's license renewal form. All drivers are now automatically sent the pink organ donor sticker with their new licenses in the mail.

However, driver's licenses are only renewed every five to six years.

The California Transplant Donor Network says registering as an organ donor is just a click away at www.DonateLifeCalifornia.org. The network also recommends donors clearly communicate their desire to close family and friends.

Jeanne Butler, 33, a frequent customer at Great Bear Coffee in downtown Los Gatos, says she has been a registered organ donor for about five years, since she last renewed her driver's license.

"I didn't even know [the opportunity] existed until I saw the option on my driver's license," she says. "I'm really glad I'm doing it. I believe that if I could save another life, that would be phenomenal."

If the story of Sharon Stout is any indication, that choice could affect many lives. As Schiller put it, "Donors are silent heroes who make a huge difference in this world."