April 23, 2012

Cleveland Clinic hopes to use more living donors for liver transplants

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Associated Press file
The removal of part of a liver from a living donor is much more complicated anatomically than removing a donor kidney.
Published: Monday, April 23, 2012, 8:15 PM

By Angela Townsend, The Plain DealerThe Plain Dealer

Statistics on living liver donors

Since 1984, the Cleveland Clinic has performed nearly 1,700 liver transplants — more than half of Ohio's total. The University of Cincinnati Medical Center comes in second with 833 liver transplants. University Hospitals Case Medical Center has performed 526 liver transplants.

  • Nationally, just over 100 of the country's 170 transplant centers have liver transplant programs; only one-third have performed more than 50 transplants from living donors.
  • To date, the Cleveland Clinic has transplanted 49 livers from living donors, according to data from the Clinic and the Organ Procurement Transplant Network.
  • Nationally, the number of living donors has dropped over the years. At its peak in 2001, there were 524. The last year in which there were more than 300 was 2005.
  • Less than 4 percent of all liver transplants in 2011 came from living donors.

Source: Cleveland Clinic, Organ Procurement and Transplantation Network

CLEVELAND, Ohio -- After not performing liver transplants from living donors for a year, the Cleveland Clinic has ramped up its program to address a long transplant waiting list. The Clinic's goal for 2012 is to conduct 12 surgeries with living liver donors, at a pace of one a month.

That would be almost as many as the 14 liver transplants using living donors the Clinic did between 2008 and 2010. None of the liver transplants for 247 patients at the Clinic in 2011 involved living donors.

So far this year, four Clinic patients have received a portion of a liver from a living donor, equaling the number in 2010. For the past several years, the Clinic has been the only liver transplant center in Ohio to perform surgery using living donors.

Nearly 17,000 people are currently on the national liver transplant waiting list, 194 of them patients at the Clinic, said Dr. William Carey, director of the Hepatology (Liver) Center in the Clinic's department of gastroenterology.

"Only about one-fourth of patients [on the list] get a transplant every year," said Carey, who also is chairman of the Living Liver Donor Advocacy Team in the Clinic's Digestive Disease Institute. "There is a gap between the need and the reality that is almost exclusively the lack of donors."

Unlike people on the kidney-transplant waiting list who can have dialysis, someone with advanced liver disease who is awaiting transplant has no comparable option, and many are pretty close to death, Carey said. The removal of part of a liver from a living donor is much more complicated anatomically than removing a donor kidney, Carey said.

"This isn't restricted to just one center or one state," Carey said of the scarcity of living liver donors. Part of the decline has stemmed from highly publicized deaths of living donors, he said.

In 2010, two men -- one at the University of Colorado in Denver, the other at Lahey Clinic in suburban Boston -- donating parts of their livers died three months apart as a result of their surgeries. They were the third and fourth recorded deaths since 2000, out of the more than 4,500 living liver donors since 1989.

Those deaths, Carey said, are out of proportion to the relative risk.

"When it hits the news media . . . it does put a damp blanket over people's willingness to step forward and volunteer," he said.

Encouraging liver donors

The Clinic has taken steps to encourage liver donation, including a more user-friendly website, making sure all exam areas have brochures available that explain being a living donor and putting up informational kiosks.

"Volume makes a difference in terms of quality," said Carey, explaining what he calls the Clinic's "self-imposed" goal for 2012. There's no reason why other top transplant centers can't do the same thing, he said.

"There has to be an institutional commitment to get things done," he said. "That's really the only way we're going to make an impact.

"We as [an entire] community need to band together to increase donor-organ awareness," he said.

That increased awareness needs to include a closer tracking of all living donors after surgery, said Donna Luebke of Montville Township in Medina County, who has served as an independent donor advocate to Lorraine Hawks, whose husband, Paul Hawks, died in 2010 during surgery to donate part of his liver to his brother-in-law.

Since 2000, the follow-up on patient conditions has been mandatory for transplant centers, which must report to the United Network of Organ Sharing -- which manages the nation's organ-transplant system -- any problems experienced by living donors for a minimum of two years after surgery.

"There is no safety net for complications afterward," said Luebke, an associate in the Center for BioMedical Ethics at MetroHealth Medical Center. "Kidney donors at least can go on dialysis. But what can you do for a liver donor?"

Montefiore Medical Center in New York City has one of the newer liver transplant programs in the country, performing 65 transplants since its inception in 2008. Two have been from living donors.

"We would like to do about six [living donor transplants] per year," said Dr. Paul Gaglio, medical director of liver transplantation at Montefiore, one of New York's smaller transplant programs.

The target volume of any transplant center is driven not by the desires of those directing the program, but by the number of patients on the waiting list, Gaglio said.

"When we look at the option of living-donor liver transplantation, it's a very thoughtful process," he said. "Is it an appropriate option for the recipient? Is it a safe option for the potential donor? All decisions are made in a way to maximize outcomes and maximize the safety for the donor."

To help liver donors recover, the Clinic has a program that mirrors one begun in 2010 for kidney donors. Donor WIn (Wellness Initiative), helps patients regain their pre-surgery physical condition and activity.

Luebke, who also serves as a board member for Lifebanc, the organ-procurement organization for Northeast Ohio, said more work needs to be done to make available more organs from deceased donors. That means allowing organs to go anywhere in the country where they are needed most, not restricting their use to within their geographic region, whose borders are defined by the United Network of Organ Sharing.

"To me, the living are not the solution to the organ shortage," Luebke said.

When a living donor is the best option

For Roger Hartzell, however, the living -- specifically, his son David -- was the solution.

Hartzell of St. Clairsville (a few miles from the West Virginia border in Belmont County) is recuperating from a transplant performed by Drs. Bijan Eghtesad and Koji Hashimoto in January at the Clinic. David Hartzell, who lives outside of Lima, donated the right lobe of his liver.

Diagnosed in 2004 with liver disease, Roger Hartzell went through two years of testing before discovering cirrhosis that stemmed from his exposure to Agent Orange while serving in the Vietnam War.

The majority of patients who require a liver transplant have cirrhosis, in which scar tissue forms on the liver because of an injury or long-term disease. That scar tissue blocks the normal flow of blood through the liver that is essential for removing toxins.

Cirrhosis is caused by alcohol abuse, drug use and a couple of dozen other causes, including obesity and some inherited diseases.

For a year, a couple of different treatments helped Hartzell. Then he went to the Clinic for an evaluation. Doctors there decided to put him on the transplant waiting list.

A Clinic social worker in the liver-transplant department broached the idea of a living donor to Hartzell and his wife, Jane.

"We only have the one son," she said. The couple's response at the time? "Oh, no. We're not interested in that," she said.

But Hartzell's condition wasn't getting any better.

"I kind of realized that, after being on the list for a while, there weren't enough livers to go around," Hartzell said. His score in the Model for End-Stage Liver Disease system -- used to prioritize people on the waiting list -- wasn't accurately reflecting how sick he really was. Because his score was on the lower end, he wasn't moving up on the list.

"I didn't get really bad until the last year, and then I went down fast," he said, recounting being in and out of the hospital for the better part of a year. "If I didn't get a liver soon, I wasn't going to get one."

The last thing the Hartzells wanted to do, they said, was to put their son, a pharmacist, in harm's way.

"We went back and forth and finally came to the conclusion that David was probably his dad's only hope," said Jane Hartzell.

It took two weeks for Roger to muster up the will to ask David to consider being a donor.

"It is a major, major operation and something could go wrong," he said. "I wasn't really scared for myself. I was more concerned about David."

After listening to his father "hee-haw" around the question during a weekend visit last July, David said he didn't hesitate to say yes.

After tests to establish that father and son were the same blood type, he began the weeks-long process of a medical evaluation, and discussions with the surgeons and other Clinic staff.

"Understanding [the risk] was my biggest question at that point," said David, who exchanged emails and phone calls and spoke face-to-face with Clinic staff about the risks and potential difficulties.

With his questions answered, the surgery went forward.

Drs. Charles Miller, Federico Aucejo and Cristiano Quintini removed the right lobe (the larger of the liver's two lobes) of David's liver for transplant into his father.

David stayed in the hospital for one week. The following week, Roger was cleared to go home.

Both said they are recuperating well, albeit slowly.

Two months after surgery (the costs of both covered by Roger's insurance), David started gradually returning to work. He is exercising again, although nowhere near at his pre-surgery levels.

Roger no longer has to use a wheelchair or a walker, and he no longer has to take some of the medicine to deal with the effects of hepatic encephalopathy. That condition, which can occur when the liver is unable to remove toxins in the blood, affects brain function and causes confusion.

That has nearly disappeared.

On Monday, the Hartzells met for lunch before their follow-up appointments at the Clinic.

Father and son each received good reports from their physicians. Roger will return to the Clinic in July. And although David will have his blood tested every three months, his next visit won't be until January.

Before the Hartzells went home, they made one last stop together at the Clinic. They visited a man who, a few weeks after Roger's surgery, also underwent a transplant with a liver from his son.

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