Boston Globe Article

A Southern transplant
Globe Columnist / March 7, 2008
Laura Linehan's Web page depicts a vibrant and vivacious young woman surrounded by loving friends and family. In many photos, she looks as if she is having the time of her life.

Those images are in sharp but understandable contrast to the weary woman on the telephone yesterday who has liver disease. Among its ravages, the illness destroys energy. She sleeps as many as 20 hours a day.
Linehan, a Melrose native, is in Jacksonville, Fla., awaiting her second liver transplant. Even though she fell ill in a renowned medical center and was treated at one of the world's great hospitals, Massachusetts General, her best chance now to save her life is at the Mayo Clinic in Northeast Florida.
"I have my good days and my bad days," she said when I asked how she was feeling. "Some days I feel fine, and some days I feel like I'm absolutely going to die. Actually, I feel horrible today."
What on earth is she doing in Jacksonville? The answer is found in the country's convoluted system of doling out organs for transplants.
New England is chronically short on organs; Florida has a far larger supply. So in January, Linehan and her mother, Ann, moved to Florida, leaving behind family, an interior design business, and their entire support network.
"It's just crazy that you have to leave New England," Ann Linehan said this week. "We have the biggest, best hospitals in the world. It's just unbelievable."
Laura Linehan has not had a lucky life. She was born with a metabolic disorder that required a liver transplant at age 2. In the course of that transplant, she received a blood transfusion. This was before blood was screened for hepatitis, which she later contracted. By her late teens, it was clear that she would need another liver transplant.
Under the formula used to apportion organs, patients are assigned a score that roughly approximates the degree of their illness. Liver transplant candidates' scores range from 6 to 40, and the lower the number the healthier the patient is. The problem is, in New England patients have to be at risk of dying in a matter of months to reach the top of the list.
The situation is even direr for someone, such as Linehan, who needs a second transplant, because in these cases the new organ has to be nearly perfect. So, Linehan moved to Florida, where the list of recipients is shorter, and the supply of organs is bigger.
"Here, she would not be anywhere near the top of our list," her doctor, Dr. Daniel Pratt of MGH, said this week. "It would be many, many months. In Florida, she should have a transplant in the next few weeks." He added: "Our options were to let her stay here, getting sicker and sicker, or go to Florida, knowing she could get an organ much quicker."
Not everyone has the means to move to another state to improve his or her transplant prospects. That doesn't make it easy. Linehan's father and two sisters are in Massachusetts, visiting as often as they can.
While the system of distributing organs leaves much to be desired, the larger issue is a lack of donors, Pratt said. Not enough is done to recruit donors, and even some people who are willing to donate organs find those wishes thwarted by relatives after their death, Pratt said. Between 1,500 and 2,000 Americans die each year waiting for a liver transplant.
Having had liver disease virtually all her life, Linehan has seen what can happen to those forced to wait too long. Her lifelong best friend died during transplant surgery at 20. Linehan's outlook is far brighter. It seems cruel, though, that life and death can be decided so randomly. All she wants is what she has seldom had: a normal life.
"I want to go back to college," she said. "I want to get a job. It's been so long, and I've been so sick, that I just want to get my life back on track."
Adrian Walker is a Globe columnist. He can be reached at walker@globe.com.