Katie Margolis

Katie Margolis (left) and a friend enjoy the Arizona landscape.

When Katie Margolis was growing up in St. Louis, Mo., she didn't go to tea parties and sleepovers. Instead, "I lived my life around doctors," she says.

At the tender age of 2, Katie was diagnosed with focal segmental glomerulosclerosis, or FSGS, a disorder in which the body's immune system causes scar tissue to form in the kidneys and impede their function. The cause is unknown, and there are no prevention strategies. By age 5, both of Katie's kidneys had succumbed to the disease, and she was forced to spend up to 10 hours a day tethered to a dialysis machine.

When Katie was 6, her father, Rob Margolis, attempted to give Katie a normal life by donating one of his kidneys to her. However, that kidney experienced complications and stopped functioning less than 90 days later, putting Katie back on dialysis.

"Some patients handle dialysis very well," Katie explains. "I did not. You want to eat pizza on a Saturday night, but you can't. You want to jump in the pool, but you're wearing a catheter, so you can't. I felt like I couldn't live a normal life."

Katie dubbed her at-home dialysis machine "Freddy Krueger," a reference to the horror movie villain.

At age 8, Katie received a second kidney — this time from her mother, Shirley Brown. This second kidney allowed Katie to regain a measure of health, and although there were complications, she was able to live a relatively normal life for the next 11 years.

In 2003, Katie moved with her mother and stepfather, Fred Brown, to Scottsdale, Ariz. "I stayed busy," she says. "I went to school. I had friends. I had a boyfriend. Only a few people knew that anything was wrong with me." But even on good days, after only a few hours out, Katie would be exhausted.

In January 2004, just one month before Katie's 21st birthday, there were dramatic signs her struggles weren't over. Katie got very sick while driving, passed out, and wrecked her car. A few days later, while at a friend's house, she got sick again. "I was so sick, vomiting and with a horrible migraine," Katie recalls, "that he called my mom to come and get me, because he knew something was wrong."

Katie was admitted to Mayo Clinic Hospital in Phoenix, where she learned that her second kidney had failed, putting her again back on dialysis.

"Honestly, living with a disorder like this since age 2, you always expect the worst to happen," Katie says. "I knew I was going to get sick again. I was expecting it. But then, boom! It happened. Just like that. And it was hard. My boyfriend broke up with me, and my friends vanished. I had to drop out of school. Everything went bad, all at once."

Raymond Heilman, M.D., a Mayo nephrologist, says Katie's successful transplant was possible, despite antibodies that could lead to rejection, because of new therapies that are more effective in reversing antibody-mediated rejection.

Keeping up hope

According to Raymond Heilman, M.D., a physician in Mayo Clinic's Department of Transplant Medicine in Arizona, who coordinated her care, Katie's body had formed alloantibodies, or antibodies that fight against the proteins of another individual. These alloantibodies had attacked the grafted kidney, a condition known as antibody-mediated rejection.

Katie was determined not to live the rest of her life on dialysis. Although the alloantibodies in Katie's system increased the risk of a poor outcome if she had another kidney transplant, her age and determination, as well as her caregivers at Mayo Clinic, were working in her favor. "She's a young woman" says Dr. Heilman, "and we were determined to do what we could." And so the search began for a new kidney for Katie.

Dealing with Katie's condition was difficult for her and her family. "My mom took care of me most of the time, because my stepfather traveled for work," says Katie. "And my father, Rob, who's a doctor in Missouri, took care of me long-distance by helping me understand what was happening medically. But I wasn't exactly the nicest person. The situation took a toll on everyone."

However, family is family. And Katie's was there for her. Her mother, father and stepfather worked closely with the Mayo Clinic treatment team to care for Katie's immediate health and also to raise awareness of her need for a new kidney. Her father even flew in with donors from St. Louis. Fourteen people stepped forward to offer a kidney, but "donor after donor was turned down," Katie explains. One potential donor was approved but backed out two weeks before the scheduled surgery.

Meanwhile, Ann Vanos, transplant coordinator at Mayo Clinic Hospital, diligently continued the search for a non-living donor. "Each time the hospital would call, they would start out by saying, 'I'm so sorry,' when a kidney was not available," Katie recalls. "It was so frustrating."

David Mulligan, M.D., a Mayo Clinic transplant surgeon, urged Katie not to give up hope. "When you least expect it, it's going to happen," he said.

Just one week after that conversation, "when I had stopped dwelling on it," Katie recalls, a phone call came from Mayo Clinic Hospital. This time it was affirmative. A kidney awaited.

Good things ahead

Katie received her third kidney in a transplant procedure performed on July 21, 2004, by Mayo transplant surgeons Kunam Reddy, M.D., and Adyr Moss, M.D.

Although the surgery was a success, "her initial course was pretty rough," Dr. Heilman says. Katie's alloantibodies rejected the kidney. This time, though, her doctors were able to fight back.

Outcome rates for patients with antibody-mediated rejection used to be "horrible," says Dr. Heilman, "because there were no really good treatment modalities available." But in the last decade, medical research has designed therapies that are more effective in reversing antibody-mediated rejection.

Katie's treatment team responded by administering an aggressive modality called plasmapheresis. Plasmapheresis is a procedure similar to dialysis, in which blood is circulated through a machine designed to remove the plasma proteins, including the alloantibodies that cause rejection. The procedure is performed in conjunction with a medication program designed to prevent the patient's cells from producing the proteins that cause the allo-antibodies.

Despite her difficult path, signs today are positive for Katie, according to Dr. Heilman. "Katie has excellent kidney function. She follows a regular oral medication program for immunosuppression, and she's done very well."

Katie's transplant surgeons encouraged her not to give up hope, even though the wait was difficult with many disappointments. When a donor organ became available, Adyr Moss, M.D., (left) and Kunam Reddy, M.D., performed the transplant.

"A lot of people have a transplant and are on their way," Katie says in retrospect. "I've had the rough end of it. But I think it's made me a better person. Some people say they live their lives day by day. I go minute by minute."

And those minutes now are full of good things. "I'm having fun being 23 years old," she says. She's almost done with school and is enjoying time with friends, going out, being active, and occasionally heading off-road and enjoying the Arizona landscape.

Katie's also busy thinking about her future and exploring things that couldn't play a big part in her life before. "I love cooking. I'm really good at Italian food. Also, I'm learning about wine. My parents say, 'You need to learn about wine if you want to marry well,'" she laughs. "So I started, and I love it."

Katie believes that more work needs to be done to raise awareness about the need for organ donation, but she's most comfortable letting her experience tell the story. "If people ask about my experience, I'll tell them. But I'm also aware that life can go on," she says. "I don't want to be at the center of all that attention. I just want to live my life. And for the first time, I can."