Life expectancy doesn't factor in to who gets transplant
"Cystic fibrosis is a pretty lonely disease," says Robyn Pasquino, whose 16-year-old son, Tony, was born with the hereditary condition. "We don't have camps. We don't have a Jerry Lewis."
Too many people don't understand the nature of the illness, she says. "People are fearful because it is a lung disease," Robyn says. Mothers gather up their children on the playground to avoid the cough of someone with cystic fibrosis, failing to understand that CF is not contagious.
"Doctors become your family," Robyn says of the time spent in hospitals and clinics.
When Tony's liver disease became acute, making him eligible for transplant consideration, some tended to question whether Tony, whose cystic fibrosis will eventually kill him, should get a new organ.
"The misperception is that there's less need because he's sick anyway," says family friend Mary Ann Ridenour.
In fact, people with cystic fibrosis often live into their 40s. Some live longer.
Dr. Isabel Virella-Lowell, Tony's pediatric pulmonologist and the head of the cystic fibrosis clinic at the Medical University of South Carolina, says she knows patients who have gone on to college and careers.
Doctors who refer patients for transplant surgery take the disease into consideration, but it is just one of many factors, she said.
The decisionmaking process involves weighing a variety of concerns, says Dr. Angello Lin, transplant surgeon at the Medical University.
If the risk of death increases with transplant, doctors will wait until the condition of the organ worsens, relying instead on medical management, Lin says.
Outcomes for transplants are calculated according to what doctors call the "half-life" of the organ, Lin says. How long does it take before 50 of 100 patients will still be alive with a functioning organ?
The half-life of kidneys and livers is about 12 years. The one-year survival rate for liver transplant patients is at 90 percent. The five-year survival rate is at 75 percent.
Which is to say that a new liver could significantly improve Tony's quality of life. It will facilitate normal blood flow, which will help his spleen return to its normal size and restore some lung capacity. Tony's diabetes also could improve.
Lin says transplant surgeons at the Medical University don't perform trauma surgery and are not involved in getting permission from donors or their families when organs are needed. The perception that doctors don't work hard to save the lives of potential donors is a terrible myth, he said.
People who want to donate organs should be sure to indicate their wishes clearly, both in writing and in discussions with family members, Lin said. This can help avoid conflict or confusion should fatal trauma and hospitalization occur.
Dr. Robert Sade, a heart surgeon and bioethics expert at the Medical University, says comorbidities, or other diseases present, can be considered in deciding whether to put someone on the organ list, but only insofar as these other conditions might impact the results of the transplant surgery itself.
"In general, length of life is not considered to be a reasonable factor in the pluses and minuses of listing someone," he says.
All things being equal, a 55-year-old is just as eligible for a new organ as a 25-year-old. Age becomes a factor only when contemplating the dangers of the operation, Sade says.
Once patients are listed, they are positioned according to the severity of their disease, he says. When death is imminent, patients are reprioritized to get the next available organ.
The United Network for Organ Sharing links all organ procurement organizations, maintaining a central database accessible by organ placement experts. The network, under contract with the U.S. Department of Health and Human Services, places candidates into a pool, then classifies patients through an objective, mathematical process. An algorithm processes the myriad factors and places individuals on the list according to several criteria, Sade says. These criteria include geography, severity of condition, tissue and blood type, risk factors, medical history, length of time on the list, immune status and more.
When an organ becomes available, the system scrutinizes patients, finding the first eligible patient, who may or may not be at the top of the list.
The decisionmaking process for major medical procedures, like transplant surgery, is often adapted according to the age of the patient, Sade says. Adults, who govern over their own treatment, must be fully informed of the facts and risks and provide doctors with legal consent before an operation can be performed. But what happens when the patient is a minor? "Can he make decisions? Does he have a voice in all this?" she asks.
Very young children rarely participate in the decisionmaking, he says. But even a 5-year-old is capable of some understanding, and it ought to be the doctor's obligation to explain matters, at least in simple terms. Most teenagers understand well what's going on.
Medical ethics dictate that doctors should seek consent from legal guardians and assent from minors. Children capable of comprehending the details of their treatment should be offered the opportunity to say, "Yeah, that's OK with me," Sade says.
Virella-Lowell says she and her colleagues in the cystic fibrosis clinic keep parents from the examination rooms once children reach 13. This is done to encourage independence and honesty, she says. Children are less likely to filter descriptions of how they're feeling and what is happening physically and emotionally when parents aren't in the room. They're more likely to take responsibility for their own care, Virella-Lowell says.
Robyn Pasquino says her son is typically very cooperative and helpful. He knows he must take enzyme pills before eating and a slew of other pills each day, and he doesn't complain. He knows he has to protect his spleen by avoiding certain activities. He even self-administers a diabetes test, pricking his finger to draw blood.
"Tony is very responsible now," Robyn says.
Reach Adam Parker at 937-5902.
E-mail this story 
Printer-friendly version
Notice about comments:
The Post and Courier is pleased to offer readers the ability to comment on stories. We expect our readers to engage in lively, yet civil discourse. The Post and Courier does not edit user submitted statements and we cannot promise that readers will not occasionally find offensive or inaccurate comments posted in the comments area. Responsibility for the statements posted lies with the person submitting the comment, not postandcourier.com. If you find a comment that is objectionable, please click "suggest removal" and we will review it for possible removal. Please be reminded, however, that in accordance with our Terms of Use and federal law, we are under no obligation to remove any third party comments posted on our Web site.
Full terms and conditions can be read here.
Comments
This article has 0 comment(s)
