Hawthorne woman's liver donation saves cousin, the 'big sister' she never had [video]
Sunday, September 9, 2012 Last updated: Monday September 10, 2012, 3:10 PM
The Record
****************
Over the last year, Jennifer Carrino had come back from the brink of death, survived internal bleeding and spent weeks in intensive care. Then came the hard part: asking her cousin for a part of her liver.
CARMINE GALASSO/STAFF PHOTOGRAPHER
Jennifer Carrino, left, and cousin Nina Walsh showing off their surgery scars. Nina donated a portion of her liver to her older cousin, likely saving her life.
In April, doctors told Jennifer that without a transplant she probably had a year to live. Jennifer, 37, was already on transplant waiting lists in two states, but it was going to take too long, they said. She needed to think about a living donor.
Jennifer turned to her younger cousin, Nina Walsh, a slip of a woman with an outsized sense of generosity.
She asked her to consider giving up part of her healthy liver. The procedure, pioneered 20 years ago, pushes the ethical boundaries of medicine because it goes against a basic tenet of medicine to “first do no harm.” If she agreed, her cousin — a perfectly healthy 27-year-old — would undergo risky abdominal surgery. But she might save Jennifer.
Though each is an only child, the two women grew up in Hawthorne like sisters under separate roofs.
Each was christened at St. Anthony’s Catholic Church, where their grandparents were married 65 years ago. All of them live within a mile of one another: the grandparents in a double-decker with Jennifer’s parents; Nina with her parents a few blocks away, and Jennifer and her husband one street over.
Sitting side by side on the sofa at Jennifer’s house, the cousins told the story of the last few months — a tale of Jennifer’s worsening medical condition and her decision to ask Nina to consider donation; of the scrupulous care taken to insulate Nina from feeling pressured by relatives as she was vetted and allowed to choose whether to donate; and, finally, the long day of surgery.
“I just can’t believe it’s been three weeks already,” said Nina, still sore and exhausted. Her scar is long, from chest to belly; all her energy goes to healing. Since the surgery, Jennifer has been using round-the-clock oxygen, wafting through plastic tubing from a machine that hums in the corner.
Their relationship is alternately feisty and tender. Of Jennifer, Nina said: “She was the big sister I didn’t have.” Jennifer quickly replied: “She was the little sister I never wanted.”
In their Mets jerseys with Mets pillows to hold against their midsections when they laughed, they were like salt and pepper shakers: The older cousin is blond and soft, the younger darker and edgier. Jennifer cries easily. Nina said she lacks the “crying gene.”
Jennifer said she and her husband, Vincent, a technology specialist at JPMorgan Chase, “were trying to get pregnant,” when this all started last year. She knew she’d have a high-risk pregnancy because of the injuries she’d suffered in a car accident 20 years ago. She also had cirrhosis of the liver, and its heavy scarring had caused varicose veins to develop along her esophagus. To prevent them from rupturing during pregnancy, doctors placed tiny rubber bands around the bulges. It would be the first of a succession of complicated and invasive procedures.
Nine days after the banding, Jennifer started to bleed internally, and was rushed to Englewood Hospital and Medical Center. It was her mother’s birthday in July 2011. Jennifer doesn’t remember much of the next few weeks — a period when doctors performed numerous procedures as they tried to stop the bleeding. A shunt was finally placed in Jennifer’s liver to reroute the blood flow, but even that required a couple of adjustments.
Nina visited Jennifer in the hospital’s intensive-care unit and was stunned. “I couldn’t imagine going on without her,” she recalled. “I said, ‘If there’s anything I can do, let me know.’Ÿ”
By October, Jennifer was out of the hospital and back at work as a recruiter for a Paramus company that organizes clinical trials. But she found herself short of breath after each telephone call — and she was on the phone all day. As a result of her liver disease and its treatment, she had developed a complication known as hepato-pulmonary syndrome, which affected her lungs and reduced their ability to oxygenate her blood.
“The only treatment, aside from supplemental oxygen, is a liver transplant,” said Dr. Michael Meininger, a gastroenterologist who treated Jennifer at Englewood. “The clock was ticking to get her a transplant.”
Jennifer’s name was added to transplant waiting lists in New York and New Jersey in December. The lung complications ensured a higher priority than she would have had otherwise, but it was still unlikely she’d get the organ in time.
Most people live about two years after a diagnosis of hepato-pulmonary syndrome, Meininger said. Jennifer’s chance of surviving for five years without a transplant: 23 percent.
“Most cancers have a lot better survival rate than that,” Meininger said.
But a transplant would improve her odds to 75 to 80 percent.
As Jennifer’s breathing worsened last spring, her doctors encouraged her to think about a living donation. The lung problems would end up damaging her heart. Without a transplant, Jennifer said she was told she would probably be dead in a year from congestive heart failure.
Liver transplants from living donors are uncommon: Only 247 of the 6,342 liver transplants performed last year came from living donors. People only have one liver, unlike kidneys, where a pair ensures redundancy. In a living donation, one of the liver’s two lobes is carefully cut away and removed for transplant. It’s major abdominal surgery for the donor, with a big incision and a long recovery.
The risk of dying as a result of the donation, although small, is real, and much greater than the risk of donating a kidney. The operation is much more complex, as surgeons go behind the ribs and gall bladder to extract part of a still-vital organ. Possible complications for the donor include liver failure, bile duct problems, and surgical infection.
“If there were enough livers to go around, we would never dream of taking a perfectly healthy person and subjecting them to a possibly life-threatening operation,” said Dr. Sandy Florman, director of Mount Sinai Medical Center’s Recanati/Miller Transplantation Institute in New York City.
But the liver is also unique among the body’s organs in its ability to regenerate. The portion left in a donor and the portion transplanted into the recipient will both grow into fully functioning livers, if all goes well.
“It’s like a lizard,” Meininger said. “You cut off a lizard’s tail, it will regrow.”
Jennifer thought about what to do for two days. “Torture,” she cried, when asked to describe her thoughts, adding emphatically: “I did not want to ask her [Nina] to do that.”
Vincent, Jennifer’s husband, encouraged her to approach Nina. “We have to at least see if she’s a match,” he said.
She called Nina at her job as a medical assistant on Good Friday and gave her the telephone number at Mount Sinai to set up the screening tests.
The death in 2002 at Mount Sinai of a man who was recovering from donating part of his liver to his brother led to a soul-searching review of the standards — or lack of them — to protect the interests of living donors. The Mount Sinai program was temporarily suspended. In February 2004, the New York State Department of Health enacted a 31-page set of regulations, covering everything from staffing and pain management for the donor at the hospital to the responsibility for life-long health monitoring.
The cousins’ first brush with the regulations was this: only Nina — not her potential recipient, not a family member — could make the call to schedule the screening appointment.
A few days later, Nina picked up the phone and scheduled the screening for mid-May.
Nina met the initial criteria handily: she was between 18 and 55 years old, and had “a vital emotional relationship” with the recipient. New York State does not permit donations of livers by unrelated strangers, because of the risk of complications.
To be precise, the risk of death for liver donors is 0.2 percent, or 2 out of 1,000 donors, Florman said — “still really rare, but much greater than a kidney.” Since the procedure was first performed in the early 1990s, 23 donors around the world have died, he said.
“The risk is real,” Florman said. “We do this because the people are going to die without this. Their loved ones want to help them.”
Nina’s medical team — the “donor advocate team” — was kept separate from Jennifer’s doctors.
Nina had a thorough physical, blood tests and imaging studies to ascertain that she could survive the removal of more than half her liver, and also that the portion donated would be big enough to save Jennifer’s life. She met with a psychiatrist. She talked with a woman who had donated part of her liver to her father.
She passed all the tests. Then came a mandated two-week cooling-off period — a time “of reflection and reaffirmation of the decision to donate,” according to the regulation.
During that blackout, “I went back and forth, I can’t deny that,” Nina said. But “all it came down to was I love my cousin. If there’s something I can do to help her, I’m going to.”
Nina knew there was a chance of death, she said. But she believed she was “young and … healthy.
I’m going to beat it. And Jen — she’s just a fighter. She doesn’t give up for anything.”
On June 4, Nina said yes.
Jennifer said she felt happy and horrible at the same time.
“Now I knew it was guaranteed I was going to live,” she said. “But again, I felt horrible because I … just didn’t want her to have go through all this.”
Day of surgery
A photo taken on July 31 in the holding area before the two teams of surgeons began their work at Mount Sinai shows the two women holding hands, in hospital gowns and caps as their beds were wheeled side by side. Jennifer, on oxygen, looks drained. Nina, smiling, looks spunky.
As surgeons removed 60 percent of Nina’s liver and transplanted it into Jennifer, the families waited. Nina’s operation took six hours; Jennifer’s 10.
Mary Anne Ottens, Nina’s mother, said she never tried to influence her daughter’s choice about the donation.
“Of course, I was more hoping that she would go through with it, because Jennifer is my niece and also my goddaughter,” she said.
Ottens said she believes things happen for a reason. “This may be the very reason I had Nina,” Ottens told her sister back in April, when Jennifer asked Nina to donate.
Michele D’Angelo, Jennifer’s mother and Ottens’ sister, sees the last year as a long journey whose darkest moments she’d rather not think about. “I just want her [Jennifer] to have the happy, healthy life she deserves,” she said.
It was a couple of days after the surgery before the cousins saw each other again. Post-op, “I felt horrible overall, I really did,” Nina said. When she could talk, she asked for Jennifer, her cellphone, and ice chips.
Jennifer doesn’t remember Nina’s visit to the ICU. She woke up five days later and said “Nina,” said her mother.
Despite the pain, Nina said she had “no regrets — none whatsoever.” She’ll keep that scar on her belly covered for a year, but then it will be back to bikinis, she said.
Her liver started to regenerate as soon as surgeons cut into it, Florman said. Since the operation, it should have grown back almost completely. The donated portion inside Jennifer is also expected to grow into a full-sized, fully functioning organ over the next several months.
Jennifer will stop needing supplemental oxygen in two to three months, Florman said, and ultimately will make a complete recovery. And in a year’s time, he added, she can go ahead and get pregnant, noting that organ recipients have had successful pregnancies.
At a checkup after the surgery, Jennifer learned that she could one day have a baby. She surprised her mother with the news a day later.
“I’m happy for you, because I know it’s what you want,” said her mother, choking up as the rest of the family gasped with surprise.
“But me, I have you.”
Email: washburn@northjersey.com
http://www.northjersey.com/community/family/Hawthorne_womans_liver_donation_saves_cousin_the_big_sister_she_never_had.html?page=all-->
