Young Woman Awaiting Heart-Liver Transplant Finds Comfort
The following is background information on an outstanding feature story subject – Kelli Jaunsen, a 22- year-old woman who is awaiting a heart-liver transplant. To arrange interviews (Kelli and her physicians are available) and for more information, please contact Sandy Van at 1-800-880-2397 or e-mail firstname.lastname@example.org. Thank you.
Los Angeles - April 17, 2006 – Lulu the cat is a constant comfort to Kelli Jaunsen as she awaits a heart-liver transplant at Cedars-Sinai Medical Center. Just 22, Kelli has long found solace in her pets—a menagerie of three cats, a German shepherd, a cockatiel and a lizard—and in the support of her parents, Robert and Ana, who have devoted their lives to saving their only daughter.
“My animals don’t like it when I’m not happy,” says Kelli, who lives with her family in Palm Desert, Calif. “Lulu especially. She curls up next to me, snuggling, and then she jumps on me until I get up out of bed.”
Bed is where Kelli has spent much of her time in recent months, as her condition worsens. The young woman has endured a lifetime of surgeries and sutures, lab tests and blood draws, and now, an ongoing stream of paracentesis procedures to drain disabling quantities of fluid from her small frame.
“The biggest problem right now is that her abdomen goes from flat to nine-months pregnant because of the fluid build up,” explains Robert, who guesses her 72 paracentesis “taps” to date may be a record. It’s a painful proposition. “All her organs have to shift, and there’s more chance of infections and scar tissue.”
Kelli now contemplates the most perilous—and most promising—procedure of her short life: a heart and liver transplant to replace her failing organs.
“This case is particularly compelling because the patient is so young and has been sick so long and because of the complexity of a dual-organ transplant,” says Steven Colquhoun, MD, surgical director, Center for Liver Disease and Transplantation, who will likely perform her liver transplant.
Colleagues Lawrence Czer, MD, medical director, Heart Transplant Program and director, Transplantation Cardiology, and Robert Kass, MD, surgical director, Heart Transplant Program, were part of a team of physicians and other health professionals that evaluated Kelli and approved her transplant.
Cedars-Sinai was, literally, Kelli’s last hope. No other institution would accept such a complex case with so many inherent risks. This will be just the third heart-liver transplant in the Western U.S.—the first was performed by Cedars-Sinai in 1998.
“Though this is an extremely risky procedure, it is her only chance,” stresses Dr. Czer, Kelli’s cardiologist at Cedars-Sinai. “The patient could have any number of difficulties.”
These include excessive bleeding, complications related to adhesions from past surgeries, unstable blood vessels, and organ rejection, among them.
But Kelli does have something going for her. “It’s a testament to Kelli’s will and her father’s support and tenacity that they’ve made it this far,” says Dr. Colquhoun.
Together with family and friends, she waits and hopes, and waits and hopes again.
“Time is Kelli’s enemy,” says her dad, who each day anticipates the phone call that could change her life— and theirs. “They’ve got my cell, our home number and Kelli’s cell.”
Her family has been there for Kelli, quite literally, from the beginning, when a few weeks after birth she was diagnosed with congenital heart conditions tricuspid atresia, atrial and ventricular septal defects and pulmonary valve stenosis.
“They’re the best,” says Kelli of her parents and older brother, Chris, who’s also a great source of support. He’s the “left-brain” sibling—a whiz at math and science—juxtaposed against Kelli’s “right-brain” flair for the creative. “We’re really close and we talk a lot.”
Kelli underwent her first heart surgery, a Blalock-Taussig shunt, at just under one and, at three years old, an open-heart surgery, a modified Fontan. At six, she persevered through another open-heart surgery to close an atrial septal defect. Scar tissue from respiration tubes caused breathing problems that necessitated laser throat surgery.
The litany of medical interventions continued in 1997 with her final Fontan surgery—an event complicated by life-threatening arrhythmias followed by a mild stroke that left her with weakness on the left side. A pacemaker was implanted to keep Kelli’s heart rhythms regular.
Two somewhat uneventful years passed. Kelli attended school, though full days turned to part days and finally too many absences as she developed side effects from one of her medications, procainamide, which induced lupus-like symptoms. Later, debilitating pain diagnosed as gallstones led to surgery to remove her gallbladder.
Intractable ascites developed soon after and then the seemingly endless paracentesis taps began to drain abdominal fluid.
And the trauma to body and mind didn’t end there. Kelli’s liver and spleen became painfully enlarged, and she developed peritonitis, a frighteningly persistent infection almost impossible to control. Next, an umbilical hernia resulted in removal of Kelli’s navel.
In 2003 came the biggest blow—Kelli’s liver was failing. This, combined with her fragile cardiac condition, meant only one thing—a transplant was necessary to save Kelli’s life.
Her physicians acknowledge that time is of the essence.
“We always want to perform the transplant while the patient is still relatively well,” explains Dr. Czer, adding that a candidate is placed on the transplant list when survival is estimated at a year or less. “The organs must be the right size and blood type—they must be as perfect as possible, given the high stakes.”
“It’s a slippery slope,” says Dr. Colquhoun of Kelli’s current state. “We can only hope there’s a family out there gracious enough to donate a loved one’s organs and give someone else a chance at a normal life.”
Timing is particularly important when transplanting multiple organs. In Kelli’s case, the heart will be replaced first, since the organ’s quality could be comprised after four hours outside the body. The liver, which has a longer “shelf life”—transplant within 12 hours is optimal—will be replaced next. The combined procedures, and required recovery periods, will run the course of a day.
Heart-liver transplants are a fairly rare phenomenon—just 40 have been performed in the U.S. Among them are shining success stories like Kelli’s friend, Christine Galan, now 36, who underwent the first such surgery in the Western U.S. at Cedars-Sinai in 1998. The Cedars-Sinai transplant team has previously performed heart-kidney, heart-liver, liver-double lung, heart valve-liver transplants, and is anticipating its second heart- double lung transplant in the coming months.
Galan’s full, active life and persistently positive disposition have been an inspiration as have Kelli’s interest in photography, art, music—Shania Twain and Neil Diamond are favorites—and, of course, animals and wildlife.
In between the bad days, Kelli heads to The Living Desert zoo and gardens to snap photos of her favorite creatures—birds and bobcats, among them. She also plays with abstract images on her computer to create digital representations of her own personal experiences, aptly entitled “Acute Pain,” “Transfusion” and “Deep Cold.”
Her images have been displayed at the Museum of Contemporary Art in Los Angeles, San Diego Natural History Museum and the online Pixiport Gallery and reproduced in the San Diego Union-Tribune, Desert Post Weekly, National Wildlife Federation webpage and a McGraw-Hill biology textbook.
“We live day by day,” says Robert. “Every time there is an opportunity we try to get her out.”
Camera in hand, there are outings to marine parks and zoos or a day at the polo field. Much like peers her age, she also likes going to the movies and playing video games like FFX and FFX-2. Kelli’s also been learning the violin, though she finds it a challenge.
There’s also been the fun and excitement of her friendship with actor John Stamos, famous for his role in the TV show “Full House.” In April 2005, Kelli shared one of the best times of her life with Stamos at Disney World. In Key Largo, Fla., a wish came true to swim with a mother and baby dolphin, her favorite creature. In July, she sang with Stamos and The Beach Boys in Las Vegas.
“Best of all we’ve become friends,” states Kelli’s dad. “We email and see each other. There’s no ego just a down-to-earth person.”
But the window of opportunity for fun is slowly closing as Kellie awaits her surgery.
“I don’t really plan,” Kelli acknowledges. “I just go day to day.”
Adds her dad, “She tries her best not to dwell on it.”
The former sheriff’s deputy, retired after a massive heart attack in 1991, has created a comprehensive website for Kelli at Eccoblue.org, named after a much-loved video-game character from her childhood, Ecco the Dolphin, and her favorite color, blue. It is a heartfelt testament to her life and the love that surrounds it.
He now sees his early retirement as a blessing in disguise, Robert says, “because otherwise I wouldn’t be with Kelli like I need to be.”
That’s meant serving as a support system and advocate through her many hospitalizations. His persistence and determination paid off with Cedars-Sinai’s agreement just after Thanksgiving 2005 to perform Kelli’s transplant. She’d been turned down by other institutions who felt the complications and potential outcome were too risky to attempt the surgery.
Despite increased awareness of the need for organ donation, demand still far exceeds supply. For Kelli, who needs both a heart and liver from a donor of similar size and age, availability is even more an issue.
Kelli and family face the transplant with mixed emotions.
“She’s on the list and we’re happy she has a chance, but there’s fear as well,” says Robert, whose devotion runs deep. “I tell people, she’s not heavy, she’s my daughter.”
Through it all, family and friends are supported by Kelli’s million-dollar smile.
“She must have some really powerful spirit,” her dad declares.
It’s a spirit he hopes will see her through to the future she deserves and the lifetime of happiness any parent would wish for their child.
Like the brilliant butterflies that perch upon her at The Living Desert—a moment caught on film not so long ago—Kelli hopes to be reborn, free to soar, to seek, to experience all the beauty life has offer.