Monday, February 09, 2009

Wait for third heart is tough lesson for Alabama transplant recipient

Ann Noble Carlton waits for 2nd heart transplant

Ann Noble Carlton received a heart transplant in 2003 and must take dozens of pills a day. Now she needs another transplant.
Photo: Beverly Taylor/Birmingham News

This article emphasizes the importance of following doctors orders to the T because it could mean life or death to an organ transplant recipient. Not to take daily medications to prevent rejection does a disservice to the recipient but its also a great disservice to the donor, donor family, doctors and the entire medical team who all combined to make this wonderful second chance at life possible.

Posted by Tiffany Ray -- Birmingham News

Five years ago, Ann Noble Carlton got a second chance at life when doctors replaced her failing heart with a healthy donated one. Today, she needs another. The 23-year-old is suffering from coronary artery disease, a condition that leaves her susceptible to a massive heart attack. And Carlton contrib uted to her situation by occa­sionally failing to take the da ily medication that helps protect her transplanted or gan -- a problem common among young transplant re­cipients, experts say, but un­derreported.

Doctors predicted last fall Carlton had only months left to live. But a last-wish trip to New York City is helping the south Jefferson County woman defy those predictions with new medication and the hope of a second transplant.

"Before the New York trip, I went to bed crying, crying, crying because I thought I wouldn't wake up," Carlton said. "But when the New York doctors said 'there's hope for you,' it completely turned it around."

Carlton, a previously healthy athlete and scholar, got sick in 2003 as she was fin­ishing her junior year at Hoo ver High School. "On Satur day, I was playing volleyball. On Sunday, I couldn't breathe."

She soon discovered her heart was failing. Five weeks later, she received a heart transplant.

Carlton bounced back quickly, resuming practice with the school volleyball team 10 days after surgery, and since then she has done a lot of the things other people her age do. She graduated from high school, went away to college and even spent two semesters abroad, in Spain.

Missing pills

Like other transplant recipi ents, Carlton must take immu nosuppressants, medication that protects transplanted or gans from the body's immune system. Carlton said she now takes more than 30 pills a day, and they often make her tired and sick.

She said she's forgotten her pills only twice, but there were other times she just didn't take them. "My mem ory's fine. It's just, it's hard."

In her first semester at Emory University, for exam ple, she got fed up seeing other girls go out and have fun while she stayed in the dorm and went to bed early. "They thought I was boring." So she took a break from her pills without consulting a doc­tor.

Dr. Robert Ettenger is a pro fessor of pediatric nephrology and director of the pediatric kidney transplant program at Mattel Children's Hospital UCLA. He said failure to take medication is extremely com mon among teenage trans plant recipients, who find themselves totally dependent on prescription drugs, the medical community and their parents at the very time they are seeking independence.

Although widely occurring, this is "one of the most under appreciated problems we have" in transplants, Ettenger said. People don't like to ad mit when they are noncompli ant, making it a difficult prob lem to detect and document, he said.

Ettenger said new studies are under way to address the problem, including one he is working on with a grant from the National Institutes of Health.

Noncompliance is also one factor doctors use to decide whether someone is a good candidate for a transplant, said Anne Paschke, spokeswo man for United Network for Organ Sharing, which man ages the nation's transplant system. Transplant teams evaluate potential recipients to decide whether to add them to the waiting list for an organ.

Once a patient is placed on the list, however, the issue subsides. When a heart be comes available, a recipient is selected based primarily on compatibility, proximity and need, Paschke said. Potential recipients must be compatible in terms of blood type, size and other factors.

For hearts and lungs, recipi ents must also be close by be cause the organs will not stay viable long enough for lengthy transport. Among candidates meeting those criteria, priority is given to those with the greatest medical urgency.

As of Jan. 30, there were 2,753 candidates on the list for a heart transplant nationally, including 50 in Alabama, ac cording to UNOS data. Na tionally, 2,209 heart trans plants were performed in 2007, the most recent year with complete data available. The same year, 328 people died awaiting a heart, accord ing to UNOS.

Second heart transplants are relatively rare. In 2006, the most recent year for which data is available, only 3.7 per cent of heart transplants, 82, were repeat transplants, ac cording to Joel Newman, a UNOS spokesman.

Rejection episodes

Missing pills landed Carlton in the hospital on several oc casions with "rejection ep­isodes," but after a few days, she'd be OK again. Doctors warned that one day they wouldn't be able to fix things if she continued to miss her medications.

In June, that day came. Doctors detected the coronary artery disease that now threat ens to kill her.

Even then, Carlton said, "my mom and I weren't that worried about it. We weren't scared. The doctors knew what was coming, but we didn't understand."

In October, Carlton learned the gift she had received was giving out.

Told she didn't have long to live, Carlton said the first thing she thought to do was cancel the gynecology ap pointment she had scheduled for the following week. Then she thought she'd like to visit New York City.

She'd seen it countless times in television shows and movies, and her best friend lives there, but Carlton had never been. With help from her mother and sister-in-law, she began planning a pre-Christmas trip.

Meanwhile, Carlton's story made its way through family connections to the Dr. The­odore A. Atlas Foundation, a New York-based nonprofit that provides assistance to people and organizations in need. The foundation gave her a whirlwind tour.

"We were just going to go up there for the atmosphere -- see the lights, feel the cold," Carlton said. Instead, she met Brett Favre and other New York Jets, and Chris Noth, "Mr. Big" on television's "Sex and the City." She sat in the third row for a Rockettes Christmas performance at Ra dio City Music Hall, and in the fifth row for "Wicked" on Broadway. In between, she and her three companions -- her mom, an aunt and a cousin -- were ushered to some of the best restaurants in Manhattan.

New hope

Best of all, the foundation sent her to a team of New York doctors, who gave her new medication to slow the progress of the disease and told her she might live an­other year, or even two.

Carlton has used the time she's been given to seek out a new team of doctors willing to give her the chance to show she'd take better care of a sec ond transplanted heart. Two weeks ago, she received word that a team at Vanderbilt Uni versity Medical Center had agreed to take on her case.

Carlton said she thinks about the family whose dona tion has kept her alive for more than five years and wor­ries what they'd think if they knew she hadn't always taken care of the heart they gave her. She now says she is com mitted to taking her medica tion and hopes her example will be a message to other young transplant recipients.

"I have to take pills to stay alive," she said. "That's a huge responsibility."

Carlton said her new medi cation appears to be working; recent tests showed the dis ease is moving more slowly. Representatives for the trans plant team at Vanderbilt de clined to be interviewed for this article, but Carlton said doctors there will continue to track her progress, and, at some point soon, she will need a new heart.

In the meantime, she said, "I feel like I'm living instead of dying."

Already, she has lived to see the birth of her brother Kyle's first child, Ann Kaitlyn, and she's confident she'll get to be a bridesmaid in her brother Jay's wedding in July.

Carlton knows she's not out of the woods yet, and she still has some bad nights, but "now I have a lot of hope," she said. "I can watch my niece grow up for a little while."

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
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