‘Bucket list’ banished: Homewood woman marks 20 years as liver transplant survivor

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Angelique Marseille, 42, of Homewood, reflects on the 20th anniversary of her liver transplant. | Brett Roseman~Sun-Times Media

Updated: March 16, 2012 8:04AM

Angelique Marseille was just 22 years old, a college student looking forward to graduation. But suddenly she had to confront the possibility she would die young, and soon.

There was a problem with her liver, she was told. She might have only 10 days to live.

“I told myself, ‘If this is my time, it’s my time,’ ” she said. “I had to be OK with that.”

That was 20 years ago. Clearly, it was not her time. Instead, Marseille has become a true survivor — anything but a given in the world of liver transplants — and the anniversary of her transplant surgery is celebrated like a second birthday.

Marseille’s second chance at life came Feb. 7, 1992. At that point, she didn’t think she would live to see her 23rd birthday on March 28.

“It’s been 20 years. I’m just so happy. I’m looking for 20 more years,” Marseille said jubilantly.

Today, the Homewood mother of two takes nothing for granted. She tries to live a good life and help others get that same second chance.

According to mayoclinic.com, 28 percent of liver transplant recipients die within five years, and a 20-year survival “is very unusual,” said Dr. Helen Te, Marseille’s hepatologist and the medical director for the adult liver transplant program at the University of Chicago Medicine.

“A lot of people don’t make it to 10 years, and very few see 20,” Te said. “But everything looks good for her. There’s no reason she will not keep on going.”

While this year was a milestone, Marseille marked Feb. 7 with her usual ritual. She spent some time poring over the United Network for Organ Sharing website, checking the numbers. This year, the number of people nationwide waiting for an organ donation was 112,946.

“My husband thinks it’s morbid. But I spend a couple of hours staring at that list. I was on that list, and 18 people on that list die every day waiting for an organ,” Marseille said. “Then I take a moment to think about my donor and his family. He was someone’s son or brother, and I’m sure they are remembering him on this day, too.”

‘It’s just awful to know you are dying’

Twenty years ago, when she walked into University of Chicago Hospital, Marseille had never really felt sick a day in her life. She was stunned to learn that without a liver transplant, she might only live another 10 days. Hospital staffers were stunned that she still was walking and driving, since her liver was only functioning at 5 percent.

“I knew nothing about organ donations,” Marseille said.

Now, she’s a trained volunteer with the Gift of Hope, and recruits donors, especially in black communities. But on that day, as she lay in the hospital waiting and reading brochures about organ donations, Marseille cried a lot.

“Someone would have to die and maybe I would get a liver. So many things had to be lined up, and then it (transplant) may not even work,” she said.

Her symptoms had surfaced in November 1991, when her twin sister Angenette noticed that Marseille’s eyes appeared yellow. But she was too busy to go to the doctor.

By December, the palms of her hands were yellow, there was a large bruise on her back and she felt fatigued. Still, she put off a doctor’s visit.

It wasn’t until her face broke out in a rash in January that she made an appointment with the family physician. He referred her to a gastroenterologist, who referred her to a specialist at University of Chicago Hospital.

Her body’s immune system had been attacking her liver. The destruction was so extensive, doctors are not really sure what caused her disease, Te said. The most common causes are autoimmune hepatitis and fatty infiltration of the liver, but Marseille didn’t have a fatty liver, Te said.

“Liver disease is quiet until it reaches the end stage,” Te said. “By the time symptoms appear, it is time to plan for a transplant.”

The liver is vital to the functioning of the entire body.

“It’s the powerhouse,” Te said. It metabolizes, detoxifies and transforms food into energy.

And it has nothing to support it when it fails, Te said. With kidney failure, there’s dialysis. When the heart slows, there are devices to help it pump. But there is nothing yet to help the liver, she said.

In searching for a donor, it was critical to match the blood type, age and the size of the liver, Te said. But the liver is not as picky as other donated organs, such as a kidney.

While waiting in the hospital, Marseille couldn’t imagine looking 20 years ahead.

“It’s just awful to know you are dying,” she said. “I was thinking ... ‘Will I go back to work? Will I have kids?’ I was praying I could just see my baby’s face.”

With treatment, her liver function improved to 10 to 12 percent, just enough to keep her hanging on until a donor could be found three weeks later.

Early on Feb. 7, her doctor brought her the news: A donated liver became available from a young man who was killed in an accident. Marseille began praying for his family.

The transplant surgery lasted 14 hours. Marseille woke up one week later.

“It was Valentine’s Day, and I woke up smelling roses,” she said, recalling that her senses were much more alert.

She never got a chance to thank her donor’s family.

“I wanted to thank them for saying ‘yes’ in their tragic moment. It was a courageous thing for them to do,” she said. “I want them to know that life has been good to me because of what they did for me.”

Recovering, helping others

During the weeks of recovery — still unsure of the transplant’s success — Marseille took at least 16 different anti-rejection medications and created a “bucket list.” She wanted some simple things: to go for a walk, enjoy a glass of lemonade. She also wanted to visit the Grand Canyon and have a son.

And she struggled with “survivor’s guilt.”

“I kept thinking, ‘I’m here and he’s not,’ ” Marseille said. “I cried a lot.”

She talked with another young liver recipient and attended a support group.

The survival experience has been life-changing. Marseille earned her master’s degree in counseling, married her boyfriend who was by her side through her ordeal, and gave birth to two healthy sons, now 11 and 17.

Twenty years later, she no longer checks items off her bucket list, and her meds have been reduced to 1 1/2 pills per day.

Although she can’t be around sick people because her immune system is compromised — she had to leave her house for two weeks when her son had chickenpox — the side effects have been minimal.

“She’s really been blessed,” Te said.

“I’ve been really fortunate,” Marseille said. “I take good care of myself. I don’t plan to do this again.”

But while she may not be a transplant patient again, she wants others to have the opportunity.

A few years after her transplant, she began to volunteer with Gift of Hope, an organ procurement organization, to spread the word about the need for organ donors.

“This is my way of giving back because I never had a chance to personally thank my donor family. It helps me deal with it,” she said. “Every time I do a presentation, I do it from the perspective that they are there in the audience.

“No one wants to think about it. But I tell them if it was happening to you, you would want someone to give you an organ,” she said.

One donor can save or enhance the lives of 25 others, Marseille said.

She works with Gift of Hope’s African-American task force to erase the stigma about racial donations. Some believe that no one would want an organ from a black person, or that no one would want to save a black person, she said.

“I’m living proof that they give African-Americans donated organs,” she said.

According to the Gift of Hope website, which features Marseille’s story, blacks make up about 12 percent of the U.S. population, 29 percent of people waiting for organ transplants, 16 percent of all donors, and 21 percent of organ transplant recipients.

Kidney failure occurs more frequently among blacks than any other race, and blacks have an increased risk of high blood pressure, diabetes and heart disease — all of which can lead to organ failure and increase the need for organ transplants.

Te hopes Marseille can increase awareness about the need for black organ donors.

“Survival is greater when it’s the same race, but we don’t really understand why,” she said. “If we had to match race, we would wait forever for an organ donor. A mismatch on race is not prohibitive but it is riskier. It’s a matter of how many risks are you willing to take.”

Race affects immunology, but with the liver, it is not a deal-breaker, Te said.

“Transplants are risky, so we try to minimize the risks,” Te said.

Marseille especially enjoys sharing her experience with students and has given presentations in local high schools.

“The kids get it. They are the next generation of givers,” she said. “I never thought about being an organ donor in my 20s. Who does? But my boys do. When my son turns 18, that’s the first thing he wants to do.”

She also encourages students to take care of themselves and pay attention to their bodies.

“I was so busy, I did not pay attention to my body,” she said. “Your body tells you everything. You have to listen to it.”

She also tries to inspire those waiting for an organ, and does what she can for donor families.

“I know it is emotional. It tears at their heart,” she said. “I do my best because I know someone’s child is waiting, someone’s husband or wife. There is still a list.”