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A New Heart, A New Liver, A New Life: Rare Double Transplant Saves 23-Year-Old Palm Desert Woman
Los Angeles - March 23, 2007 – A new heart, a new liver, a new life. These are the poignant words Robert Jaunsen penned in an email sent to family and friends announcing that his daughter, Kelli, 23, would finally be heading home after a double organ transplant at Cedars- Sinai Medical Center—quite literally, her last hope. After nearly seven weeks of hospitalization, Kelli was discharged Wednesday, to begin a new chapter in a life nearly cut short.
In a 16-hour procedure that spanned Feb. 1-2, two organ transplant teams performed Cedars- Sinai's second heart/liver transplant—the fifth in the Western U.S. Though many of the nation's top transplant centers had been contacted by Kelli's family, only Cedars-Sinai was willing to take on such a complex case with so many inherent risks.
"Though this was an extremely risky procedure, it was her only chance," explains Ernst Schwarz, MD, Transplantation Cardiology.
Dr. Alfredo Trento, chairman, Division of Cardiothoracic Surgery, and lead heart surgeon, expressed similar sentiments: "It was a very high risk case but how can you say no to a young woman who's done nothing to deserve this fate."
Born with congenital heart conditions—tricuspid atresia, atrial and ventricular septal defects and pulmonary valve stenosis, among them—Kelli was in and out of operating rooms for much of her young life. Over the years, she suffered through a litany of related problems, including life-threatening arrhythmias, lupus-like symptoms and gallstones that required surgery. She also endured life-threatening peritonitis, an umbilical hernia and intractable ascites, which required an astounding 121 paracentesis "taps" to drain painful and disfiguring fluid from her abdomen.
"Her tummy was huge and her legs were swollen to four times their size—it was really painful to see," recalls Dr. Trento, who says her body is now back to near-normal size.
In 2003, came news that Kelli's liver was failing and, given her fragile heart, only a double transplant could save her life. In November 2005, as her health deteriorated, Kelli was accepted as a transplant candidate and placed on the United Network for Organ Sharing's waiting list. Not long after, Kelli and her family were overjoyed to learn Cedars-Sinai had agreed to accept her case, something countless other transplant centers had refused.
"Any heart or liver transplant by itself is risky," says Steven D. Colquhoun, MD, surgical director, Liver Transplantation, and lead liver surgeon. "But when you do a multiple transplant, as was needed for Kelli, the risk increases exponentially."
Finding a compatible heart and liver from the same donor was like looking for a "needle in a haystack," acknowledges Lawrence Czer, MD, medical director, Heart Transplant Program, and Kelli's cardiologist, who said that she required a "good-sized heart strong enough to handle the load" during surgery. The most challenging element of the process was finding a match since Kelli had been "sensitized" by blood products during previous surgeries.
"She'd been exposed to 90 percent of the antigens in the HLA (Human Leukocyte Antigen) system, so it was very difficult to find suitable donor organs," explains Dr. Czer. "We had to search literally hundreds of organs—it was a daunting task."
After waiting one year and two months, the Jaunsens finally got the call they'd anticipated for so long at 5:30 a.m. Thursday, Feb. 1.
"There was mixed emotion," Robert admits. "We were thrilled it had happened but also apprehensive."
"It was really hard when we had to separate for the surgery and the doors closed," Robert remembers. "The first couple of days, the tubing prevented her from talking but you could tell Kelli was thinking, ‘Wow, I'm still here.'"
The heart was transplanted first followed by the liver, explains Andrew Klein, M.D., Director, Comprehensive Transplant Center. "Because of the compromised condition of Kelli's heart, it was essential that she receive the new heart before undergoing the liver transplant."
Given her condition prior to transplant, Kelli has done "extremely well," her physicians report. Dr. Colquhoun deems her survival "a miracle," but also acknowledges the collaborative efforts of the transplant team as well as the family's support and Kelli's own resilience.
"The thoracic team is experienced and has a history of working together," explains Dr. Colquhoun, adding that in 1998, the same team members performed the first heart-liver transplant in the Western United States. Eight years post-transplant, that recipient continues to live a full, active life. Cedars-Sinai's transplant team, which has completed nearly 2,600 organ transplants in the past 18 years—has also performed heart-kidney, liver-double lung and heart valve-liver transplants, and is anticipating its first heart-double lung transplant in the coming months.
After discharge, Kelli will require routine monitoring, including regular heart biopsies to ensure no signs of organ rejections. These will become less frequent as time goes on. Her litany of medications should be cut in half within a couple of years, says Dr. Czer, though Kelli will remain on immunosuppressants the rest of life.
"You can see in her face that Kelli knows she's better," says Dr. Trento, who deems this surgery his most complex and painstaking to date—and one of the most gratifying.
Despite the odds, Kelli—an artist, photographer, musician, animal lover and more—has had something special going for her throughout this ordeal – family, friends and her own optimistic outlook on life.
"Her family has been very supportive from the beginning, which is a plus for us," explains Dr. Trento. "It made me wonder, ‘Wow, why did other institutions turn her down when there was such strong support?'"
Only certain patients could withstand the rigors of the transplant process, adds Dr. Colquhoun. "Whenever you've been this sick for this long, your mettle has already been tested, you've faced death, you're family has faced death," he explains. "The family support is what really impressed us along with their understanding of the risks involved."
Dr. Czer anticipates a period of adjustment for Kelli. "She's been sick all her life and finally has a chance for a relatively normal life—a completely new experience. There's bound to be an adjustment period since Kelli's never known a life outside of doctor's offices and hospitals."
Robert Jaunsen has high praise for the physicians and other staff involved in Kelli's care. "We couldn't have asked for better doctors—they were all amazing."
Kelli's plans for the future include school, travel, photography, art, music, outings with friends and family—all the trappings of everyday life. At the top of her list is feasting on seafood like lobster, crab and even octopus, favorites not allowed on her previous renal diet.
While Kelli's story is a happy one, she remains aware of the many patients awaiting organs.
According to Dr. Colquhoun, an estimated 2,000-3,000 transplant candidates are waiting for hearts in the U.S. and approximately 18,000 are awaiting livers. In January 2007, the number of registrations with UNOS, the national organ "clearinghouse," topped 100,000 for the first time.
Dr. Colquhoun and colleagues in the field attribute the increased demand to several factors, including better outcomes, more doctors trained in transplant surgery, added transplant centers, suitability for younger and older patients, and greater ability to transplant a combination of organs. These factors combined have made transplantation an increasingly viable option for more and more patients.