Daily Egyptian Sp03
Spring 2003
Waiting for life
Jackie Keane
Daily EgyptianTwelve-year-old Melannie Veliz died in the midst of National Donate Life Month in Chicago April 15. She died from respiratory failure caused by cystic fibrosis while waiting for a rare double-lung transplant.
Kyle Cortillet, 10, still waits patiently in St. Louis, where he fights cystic fibrosis. He waits for the same rare lung transplant that will add 10 years to his life.
Veliz brought national attention to the shortage of organs available for transplants in the United States today, a battle that those waiting for organs have to deal with on top of their disease. She was not at the top of the list. Cortillet, who is at the top of the list, has waited for two and half years for new lungs, which will not be a cure, but an addition to his life.
Sixty-seven patients have died waiting for a lung transplant from St. Louis Children's Hospital since its inception, according to Kim Groneck, spokesman for the hospital. The St. Louis Children's Hospital is one of the few hospitals in the world that performs lung transplants in children.
More than 75,000 Americans are waiting for life-saving organ transplants and hundreds of thousands more could benefit from tissue transplants.
Illinois Secretary of State Jesse White, an advocate for organ donation in Illinois, said that he believes the biggest myth that prevents people from donating is the belief that doctors will not use all of their resources to save an organ donor's life.
Organ donors are patients who have been declared brain dead. Donation is not considered until all efforts to save a person's life have failed. The transplant team has absolutely no involvement in a patient's care prior to their death. The team is notified only after the death of the donor has occurred.
White joined about 15 Jesse White Tumblers in an event to promote organ donation at John A. Logan Community College last week.
Aki Fort, SIU student in computer engineering, as well as a Jesse White tumbler was one of the many flipping, high jumping gymnasts who helped to promote organ donation.
"I was taught to believe if you could give, why not give?" Fort said.
There are currently 60 patients active on the waiting list for a pair of lungs, according to Groneck. One of these is Cortillet.
Cortillet and his family moved from their home in Chicago to St. Louis since he was wait-listed to receive a pair of lungs through St. Louis Children's Hospital. A person cannot be wait-listed until their lung function reaches below 40 percent. He is waiting for someone to die who is shorter than 5-feet tall, which means either a short adult or a child.
A person receives a lung transplant by the order in which they have been on the waiting list. This is because doctors have yet to agree exactly what determines a medical urgency, something that is taken into account in other transplant surgeries.
From a time that a person has relocated closer to the hospital, no child has waited as long as Cortillet for a transplant, said Michelle Frankiewicz, Cortillet's mother said. Frankiewicz said that she understands parents not willing to donate their kids' organs.
"It is hard to hope for people to donate because it means that someone else is losing their child," Frankiewicz said.
Cortillet still waits, though, having gone further than 30 minutes from his home only once since he has moved to St. Louis. He said he sometimes gets tired of St. Louis.
"St. Louis is cleaner, but that's probably the only thing I like about the city more," Cortillet said.
He is homebound for school because of how frequently he gets sick, and his inability to be involved in gym and recess because he needs oxygen 24 hours a day. Cortillet has an oxygen tube through his nose that feeds him oxygen from a tank that he carries with him. The most exercise doctors want him to do is walking.
Right now walking seems to be all right for Cortillet, because his favorite thing to do is playing video and computer games, but his dreams of serving his country will never be reached.
"I want to be in the Army, but I can't," Cortillet said.
Once he receives his transplant, Kyle plans to go to a different state, such as Arizona or Florida.
"We've been there once or twice and it is nice there. We want to go again, but we can't," he said.
One of the many things people do not understand about organ donation is that it is rare for someone to actually die in a manner that would allow their organ's to be transplantable. According to the Chicago Sun-Times, fewer than two of every 100 hospital deaths are a medically suitable candidate for organ donation.
Pam Ingram, the southern Illinois regional coordinator with the Secretary of State's Office, had to make a decision on whether to donate her husband's organs when he passed away in November 2001.
With only a few spoken words, Ingram and her children made a decision that saved six other people's lives. Her husband's liver, kidneys, heart, lungs and corneas were given to those across the country who needed them to survive.
"It gives us a sense of peace. It gives us a sense of order. It makes us feel very privileged," Ingram said.
Ingram believes a lack of education to be the biggest problem. People don't understand, she said.
Ingram may work to keep people educated, traveling to high schools, but the need for donors remains greater than the amount of willing donors.
"It's all about education. All about knowing the value of their gift," White said.
In Illinois, the next of kin to the deceased is who gives the OK for organ donation. Registering is not enough, although it is encouraged by the Secretary of State's Office. According to White, 50 percent of people who come to license facilities sign up to be organ donors. But more importantly, organ donating is something that needs to be talked about with family member so a decision does not have to be made while in the hospital.
"The key is talking it over with family," White said.
Cortillet may only be 10 years old, but he thinks people need to be more educated on organ donating. This is the only thing that can save his life. His mom continues to go to school to become a nurse and his dad continues to work as a manager. But the lives of this family are far from what they used to be. They have mastered patience.
"You have to learn how to wait," Frankiewicz said. "Personally, I think I have grown because of it."
Reporter Jackie Keane can be reached at jkeane@dailyegyptian.com
Today's News | Sports | Voices - Editorial | Letters
Newsbriefs | pulse - Arts & Entertainment | Calendar | Photo Staff
Apts & Rentals | Photo Personals | Live DE NewsCam | Classified Ads
Last update: Tuesday, May 6, 2003 at 2:11:25 PM
Copyright 2009 Daily Egyptian Sp03