Chris, who was diagnosed several years ago with Hepatitis C, developed cirrhosis of the liver, and was told that he would eventually need a liver transplant. In 1999, he had hip replacements in both hips, and the medications he was given exacerbated his liver problems. Although, a transplant was not yet imminent, it was quickly becoming apparent that it would be needed sooner rather than later.
Chris’s wife Linda, began researching liver transplantation and discovered that when it comes to cadaver livers, the demand in America far outstrips the supply. “There are some 15,000 people waiting for a liver transplant,” she said, “and only about 4500 cadaver livers become available each year. In fact, we had two friends from Albuquerque who were also awaiting liver transplants. One died while waiting and the other had been on the list for years – and was still waiting. We realized it could be years before a liver might become available for Chris, and the reality was that he might die waiting for it,” she said.
Linda began exploring a news item she’d heard about – a living donor, partial liver transplant. When she broached the subject with Chris’s doctor in New Mexico, he cautioned her. The procedure, he said, was still experimental, carried with it significant risk to the donor, and probably wouldn’t be covered by Chris’s insurance, anyway. Since Chris’s condition wasn’t yet critical, the doctor felt that they should wait for a cadaver liver.
Then in October, 2000, Chris took a sudden turn for the worse and was airlifted from Albuquerque to Cedars-Sinai where he was assessed by Dr. Shackleton and the liver transplant team there. He was placed on the waiting list for a cadaver liver, and Linda once again raised the question of donating a portion of her liver to her husband. Given the long waiting list for cadaver livers, the doctors at Cedars-Sinai felt that a living donor transplant would be viable for Chris. In January, Chris’s insurance company agreed to the transplant, and Linda started three days of testing. Everything went fine until the very last test on the third day. An angiogram showed that two veins on Linda’s liver were converged and could not be separated. It would be too risky to try and take a portion of her liver.
Making the phone call home to Chris and the couple’s three children was one of the hardest things Linda had ever done. But she had underestimated her children. Chris Jr., Becky and Angel had called a family meeting in Linda’s absence and had already decided that if she turned out to be unsuitable as a donor, the three of them would step forward. But by the time she arrived back in Albuquerque, they already had worked out the details: Because Chris Jr. was married and had a new baby, his sisters felt that he should be a “last resort” donor. On the other hand, Becky, the eldest daughter, was in good physical condition. “I want to try first,” she said.
But instead of moving forward immediately with testing, the family had to wait again while the insurance company approved Becky as the donor. After that, Becky went through the same three-day testing process that Linda had. Everything looked good, but the family was advised that there was one more evaluation, known as an intra-operative cholangiogram, that would need to be done at the time of the surgery. If everything checked out normally, the transplant team would move forward with removing the right lobe of Becky’s liver and transplanting it into Chris.
According to Dr. Shackleton, “the intra-operative cholangiogram involved assessment of the bile ducts draining the portion of the liver that would be donated.” In order to minimize the risk of post-transplant bile-duct complications, there should be separate right and left bile-duct systems. But in some cases, a major bile duct from the right lobe drains into the left-side bile duct. When this happens, it is known as a “cross-over” bile duct and donating a portion of the liver is considered risky because following donation, this duct system may die and increase the risk of serious biliary complications in the recipient.
On Feb. 15, the morning of the scheduled transplant, Becky was taken into surgery for the intra-operative assessment, while Chris and Linda waited in pre-op as Chris was prepped for his portion of the transplant. About two hours into Linda’s assessment, the surgeon came into pre-op and asked to speak to Linda. “Oh, my God, she died!” Linda remembers thinking. Chris’s reaction was similar. “What’s happened?” he asked. “Does she have cancer or is something else terribly wrong with her?”
But the surgeon explained that while Becky was fine, she did in fact have a cross-over bile duct, so would not be a suitable donor. While they were disappointed that the long-awaited transplant wouldn’t be taking place, Chris and Linda remember feeling overwhelming relief that there was nothing seriously wrong with their daughter. “Becky was OK,” says Linda, “but Chris still needed a liver.”
Even while Becky was still in the operating room, Angel was racing upstairs to the transplant center. There she told transplant coordinator Andrea Peterson, to start a work-up on her as a donor. In light of Becky’s cross-over duct, the transplant surgeons decided to do some additional testing on Angel, including a special, invasive test known as an endoscopic retrograde cholangiogram (ERCP). Because this test, itself, carries some risks, it had not previously been included in routine work-ups, but is now.
Four days after Angel’s testing started, she, Linda and Chris were waiting in the hotel room when Andrea called from the transplant center with the test results. “I could tell from the tone of her voice that something was wrong and that she really didn’t want to be making this call,” says Linda. The problem was that the fat level on Angel’s liver, combined with her weight, presented problems for a transplant. The transplant coordinator explained that if Angel could lose approximately 40 pounds and bring down her level of liver fat, they could do the transplant.
“That’s all the incentive I need!” Angel declared. The family returned to New Mexico and Chris and Angel both headed immediately to the gym and signed up. Initially out of shape, Angel could only swim a few laps, but she kept at it daily and steadily increased her stamina. At the same time she also started on the Adkins diet – no carbohydrates. “I couldn’t eat bread, potatoes, starches, rice, pasta, or anything like that,” Angel remembers. But she stuck doggedly to the diet, preparing and freezing her special meals ahead of time. Within two months Angel was swimming 100 laps per day, had lost 40 pounds and had reduced her liver fat level from 15 percent to just three percent. She called Andrea with the news, and Andrea was delighted. “I’ll schedule the transplant,” she responded.
On June 18, the day after Father’s Day, Angel successfully donated the right lobe of her liver to her father. Two-and-a-half weeks after the transplant, Angel says she feels good. “I don’t need pain medication anymore except at night to help me sleep.”
And as for her dad? He’s had almost no pain and felt energized immediately after the operation. “I’ve got a whole new life to go back to. I can do anything now – maybe even go back to school and get a new job. I feel like I’m 18 again!” he says with a laugh. “In fact, I think I feel better than I did at 18!”
As a result of their experience, the Molina family has become enthusiastic advocates of living donor organ transplants. “I’ve already gone and talked to another patient at Cedars-Sinai who recently learned he needs a transplant,” said Chris. “I gave him a little pep talk, told him about the great doctors here and how the living liver transplant has worked for me. Now his wife wants to be his donor and is being tested.”
Linda also is a strong believer and feels that if more people knew about becoming a living donor, lives could be saved. “I just know that if more people knew about it, fewer people would die,” she says with conviction. “People tell us that our story is remarkable, but my girls say, ‘What’s the big deal about what we did? If people knew this was an option, anybody would do it to save the life of their loved one.’”
SIDEBAR
According to Christopher R. Shackleton, M.D., Director of the Multi-Organ Transplant Program and Center for Liver and Kidney Diseases and Transplantation at Cedars-Sinai Medical Center in Los Angeles, living donor liver transplants offer the only real hope on the horizon for thousands of patients needing a new liver.
· While the procedure is relatively new and carries with it donor risk, in the hands of experienced transplant surgeons, the risks are reasonable, he believes.
· “Living donor liver transplants constituted 8% of all of the liver transplants performed in the United States in 2000,” he adds. At the same time, the number of available cadaver livers decreased, meaning even longer waits for patients who do not have a living donor.
· Ongoing research is needed on the physiological, psychological and social issues of living donor liver transplants, says Dr. Shackleton. Rather than restricting access to this relatively new procedure, it is important that we continue to study it, improve upon it and educate both the medical community and the general public on the issues surrounding it.
· “The bottom line,” says Dr. Shackleton, “is that living donor liver transplantation is considered only when an individual’s life is at stake and the likelihood of their receiving a cadaver-donor organ within a reasonable period of time is low. As the gap continues to widen between patients needing liver transplants and available cadaver livers, living donor transplants offer the only real hope for literally thousands of patients.”
· According to the United Network for Organ Sharing (UNOS), there were 17,983 patients awaiting liver transplants in 2000, but only 4,934 liver transplants were done.
· The number of cadaver liver transplants performed in the US peaked in 1998 at 4330 (including split procedures) and has declined slightly in subsequent years (4255 and 4208 in 1999 and 2000 respectively). In contrast, the number of living donor liver operations jumped from 86 in 1998, to 226 in 1999, and to 371 in 2000.