Sipping an iced tea at an outside café, it would be hard to pick Linda Alcorace out of a crowd as someone who would need a liver transplant.
But while she may look healthy and vibrant, since 2002 she has battled the effects of a rare disease called Budd-Chiari, which destroyed her liver. The only hope for her to resume her formerly active, full life is to receive a transplant. While she's spent the last four years visiting doctors and waiting, she has no idea when the phone will ring, letting her know that a liver donation is near.
Though she is attractive, with bright hazel eyes and brown, curly, shoulder-length hair, she spends most of her time covered up in long-sleeve shirts and pants.
"My whole body looks like this," she said, rolling up her sleeve to reveal a plum-sized bruise on the inside of her arm, a side effect of her unreliable liver. "This is why I don't show most of myself. If you look at my legs and stomach, they're everywhere."
With her illness, she has to rest frequently and keep her workload light. Alcorace said she lives with her mother because she is only able to teach one class in English composition at Santa Monica Community College.
"I look good, but I am always lying down," she said. "I have good spurts, I'll have a spurt for about three hours, then I am wiped out."
'Weird intuition'
Until she turned 40, life seemed normal, though she said that she had a "weird intuition" for at least three years that there was something wrong. A visit to her doctor revealed a sudden spike in her blood platelets and he sent her to a hematologist. Eventually, her red blood cell count also jumped. Sudden, unexplained bruises started appearing on her body.
Then one Saturday in May 2002, she felt too tired to get out of the bed. Wrapped in blankets because she was cold despite the 85-degree weather, she had a pounding headache and extreme pain on her right side. She visited her hematologist on Monday, who made a diagnosis of either Budd-Chiari or a gall bladder.
"I went to the hospital," she said, "and all of a sudden, I was dying."
From there, she spent the next four months in and out of the hospital, with two operations to bring blood to her liver. Due to the effects of the Budd-Chiari disease, she was diagnosed with cirrhosis of the liver; a scarring that is irreversible after a certain point.
In late August, she found out she would need a liver transplant. She went from barely being able to sit up, to taking a treadmill test that would determine if she was well enough for the surgery. Though she once taught aerobics and used to run 10 or 12 miles at a time, she had to summon all of her strength to stay on the treadmill for the required length of time.
"They have to tell if you will survive the surgery," she said.
In the midst of her trauma, her insurance ran out. She said that from her first time in the hospital, her lab work charges alone were 64 pages.
"That is a great feeling," she said wryly, "lying in a hospital bed and the social worker says that your insurance ran out. It is terrifying."
She was able to apply for Medicaid and, after two years, she qualified for Medicare.
Waiting list
Today, nearly 1,500 people are waiting for a liver transplant in Southern California alone and 17,115 nationally, according to Bryan Stewart, communications director for OneLegacy, a transplant donor network in the region. In 2005, there were 294 recovered liver transplants in Southern California. Nationally, as of last month, there were 93,191 people waiting for some kind of transplant, either liver, kidney, pancreas, heart, lungs or a combination.
Alcorace said that she wouldn't be able to deal with her disease if it wasn't for her Catholic faith. Despite all of her trials, she said she hasn't questioned God.
"I never pray for a liver; I just have faith," she continued. "It is not for me to decide. For me to decide is to do the best I can do today."
Despite her weakness, she is a volunteer for OneLegacy and speaks locally to encourage people to sign up for organ donation after death. Alcorace also attends support group meetings with the Transplants Recipients International Organization (TRIO) based at UCLA Medical Center.
"They have been a great sense of support," she said.
According to Jackie Colleran, a volunteer for TRIO and a former liver transplant recipient, the organization began 20 years ago and is focused on support, education, legislation and advocacy for people receiving or waiting for all types of organ transplants. Colleran said that she had signed up to be an organ donor long before she thought she would ever need a donation herself. Then 10 years ago, on Nov. 30, a combination of medicines caused her liver to fail.
"I had liver failure, slipped into a coma, got a liver transplant and it took me six weeks at UCLA until I was on my feet enough to go home," she said.
Colleran said that though organ donation is an anonymous procedure, years later she was able to contact her donor's family and to thank them personally for their son's gift of life. Grateful for her second chance at life, Colleran now gives back by encouraging others to sign up to become organ donors, a process made easier now by applying through the website, www.donatelifecalifornia.org, or in Spanish at www.donevidacalifornia.org.
By choosing to donate organs, said Colleran, seven other people can benefit directly and up to 50 people may get heart valves or bone and tissue.
"In essence, it is being the ultimate good Samaritan," Colleran said. "The last act that we do before we leave this earth is this great gift of charity."
Colleran, who is Catholic, stresses that organ donation is sanctioned for Catholics and that in the Catechism of the Catholic Church, it calls organ donation after death "a noble and meritorious act to be encouraged as an expression of generous solidarity."
"Cardinal Ratzinger was very positive about organ donation before he became Pope Benedict XVI," she said. "There were many statements about organ donation from him and John Paul II that refer to it as being an act of love, an act of heroism."
She said that every time the phone rings, she hopes it's Alcorace, saying that she's going to have her transplant.
"She will have a great recovery," Colleran said of Alcorace. "She is young enough and vigorous enough."
But despite her great obstacles, Alcorace refuses to stop living while she waits for a transplant. She is now writing a book about her experience and hopes to eventually publish it.
"I think what inspired me to write the book was to help others, because there are quite a few single people who are not just in need of transplant, but have all kinds of illnesses," she said. "I am very tenacious."
For more information on organ donation, contact OneLegacy at (213) 229-5600, or go to the California Donate Life website at www.donatelifecalifornia.org or www.donevidacalifornia.org. |