A holiday story of sharing: wife donates half of her liver to husband at Cedars-Sinai

December 13, 2000

LOS ANGELES (December 14, 2000) -- When Tom Stich and Debra Lex were married on Easter Day 1993, they had no way of knowing that in the closing months of the year 2000 Debra would have an opportunity to donate half of her liver to reclaim her husband's life. And they still have trouble comprehending the depth and breadth of the branches of an "e-mail tree" that brought together hundreds of strangers who donated blood, learned about transplants, and followed Tom and Deb's day-to-day progress.

On Nov 2, the couple, residents of Newport Coast in Orange County, each underwent four-hour operations at Cedars-Sinai Medical Center in which the right lobe of Deborah's liver was removed and transplanted into Tom. Christopher R. Shackleton, M.D., Director of the Center for Liver and Kidney Diseases and Transplantation, performed the operations together with Steven D. Colquhoun, M.D., Program Director for Liver Transplantation, bringing Tom's 18-year battle with liver disease to a healthy conclusion.

In 1982, the human resources professional was hospitalized with pneumococcal pneumonia. When lab tests revealed that his liver enzymes were elevated, he was diagnosed with primary sclerosing cholangitis (PSC). But after several months of follow-up testing, the diagnosis was changed to a resolving inflammatory process.

A liver biopsy in 1994 confirmed the original diagnosis of PSC and doctors told Tom that although the disease was progressing slowly, he would likely need a transplant at some point. Tom also had developed ulcerative colitis, a common PSC complication.

Since being referred to Cedars-Sinai's transplant program and being placed on the liver transplant list, Tom and Deb have driven to the medical center every six months to meet with a team of specialists. Among them were Dr. Shackleton, Dr. Colquhoun, John M. Vierling, M.D., Director of Hepatology and Medical Director of the Multi-organ Transplant Program, and Tse-Ling Fong, M.D., Associate Medical Director of Hepatology and Liver Transplantation.

The physicians kept the couple updated on the nation's liver transplant statistics. As has been the case in recent years, the need for organs grew at an astonishing rate but the number of available organs barely budged.

Furthermore, because of the way the nation's organ transplant system is set up - with patients in late-stage liver disease moving quickly to the top of the list - the type of liver disease Tom had, primary sclerosing cholangitis, reduced his chances of getting a cadaver liver in time. Livers affected by PSC rarely fail rapidly, but PSC often leads to liver cancer. Therefore, while a patient's liver function may be considered too "healthy" to qualify for a transplant, the risk of developing cancer is great. And once cancer is diagnosed, transplantation is no longer an option.

Drs. Colquhoun and Fong first mentioned the possibility of living donor partial liver transplantation, a technique in which one lobe of a liver is transplanted from donor to recipient. Because liver cells have the ability to regenerate, the organ grows back to normal size in both patients in a few weeks. Because the estimates of when Tom might receive a cadaver liver got longer with each visit to the transplant center, Deb says the decision to offer half of her liver took absolutely no thought. "It was last January when Dr. Colquhoun said, 'Look, if you want to avoid cancer, you need to find a donor.' And I just said immediately, fine, use me. Why not?"

Deb underwent the necessary testing, and it was determined that she was indeed, a suitable donor. Tom recalls the day in October that Dr. Shackleton gave them the good news. "Everything else was working out and this was all we needed to hear in terms of 'let's go for it.'"

For being as anxious as they were to go for it, however, Tom and Deb came up with several reasons to put off the surgery until after the holidays. They didn't have wills or estate planning arranged, for instance, just in case complications arose. Also, Deb, one of the world's top photographers of mega-yachts, had a large assignment on the horizon.

Dr. Shackleton urged them to consider an earlier date, and eventually the operations were scheduled for Nov. 2. But with only a few days remaining, Tom and Deb were sure that some important preparations would have to be left undone. To their amazement, a network of friends, friends of friends, and total strangers across the country sprang up almost instantly and rallied to their support.

First, a friend of a friend - a widowed single mother with three seriously ill children and severe health problems of her own - stepped in. "She said, you need a blood drive and you need a will. I have an appointment for you with my lawyer at 10 o'clock tomorrow and it will all be done within 24 hours," says Deb. "She just organized it and we did it because we would never have been able to get it together. It was all done for us."

Meanwhile, the same friend contacted another friend, the highest-ranking enlisted officer at Camp Pendleton, to see about arranging a blood drive for a war veteran. Tom had been drafted into the U.S. Army and served in Vietnam after receiving his undergraduate degree and before going to graduate school. Within a few days, young, enlisted Marines donated 150 units of blood.

At the same time, another friend of the couple, a reconstructive surgeon in Chicago, found out about the upcoming surgery and offered her assistance, telling Tom, "You're going to be deluged by calls from friends and you're not going to have the energy to deal with this after it's over. Why don't you give me a list of names and I'll send everybody an e-mail?"

As a result, friends added friends who added other friends to the e-mail tree. "A virtual community in excess of 250 people has been created through the Internet, and they're chatting about not only our health status but organ donations and the issue of blood donations. When the word went out that we needed blood, another 50 units were donated," says Tom, 56.

In cities where either Tom or Deb or both have lived - Santa Fe, N.M., Hanover, N.H., San Diego, Miami - friends went to local blood banks. And they took other friends with them. "People have come together, and we know of at least three incidents where stranger groups arrived at the blood bank simultaneously to donate blood for 'Tom and Deb'," reports Tom. "They did not know one another but they connected and said, 'None of us knows each other, and only a few of us even know who Tom and Deb are, but we're all here to donate blood.'"

As the couple later learned, blood donations usually stay in the area where they're donated rather than being shipped across the country or going as a "credit" to a particular patient in a distant part of the country. "When I realized this," Deb says, "I figured it doesn't matter because people everywhere need blood. As it turned out, we had lots of blood." In fact, only six units were needed for the two operations.

"Not only did they make blood available for their surgery but through the circumstances of the chain of events, they also made hundreds of units of blood available for other people," says Dr. Colquhoun. "Also, because she shared her liver with him, he did not use a cadaveric organ, which can be used for someone else who needs a transplant."

The doctors and Tom consider Deb's willingness to donate a heroic act. "We're still in something of a pioneer phase," says Dr. Colquhoun. "The people who are stepping forward to do this are doing so with the knowledge that it's pretty new - that all that could be known or will be known, is not known yet. They are aware that the risks they're taking are potentially very significant, yet they want to go for it. In Tom's situation, this was not only the best option but maybe almost the only option."

Deb, 43, firmly believes that her pursuit of Tom was destined - that they were meant to be together and she was intended, somehow, to give this gift. Before the operation, when events beyond the couple's control began to fall into place, they began to realize, "We've got something going for us which is more than just us," recalls Tom.

Since their surgeries, Tom and Deb have been told of some of the benefits brought about by their ordeal and the creation of the e-mail tree: People taking active roles in the lives of strangers; the sharing of organ donation stories among new friends across the country, for instance.

People of all walks of life and philosophies have offered the couple unconditional support. "We have Christians, Jews, Greek Orthodox, Quakers, Buddhists, agnostics and true non-believers pulling for us," says Tom. "In a sense, we're only witnesses to this virtual community. It's gone beyond just Tom and Deb. There's a tailwind behind it."
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Cedars-Sinai Medical Center

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