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Online Liver Transplant Group Offers Support Regardless of Health, Schedule or Distance
Los Angeles - May 18, 2006 - Lori Dunn, who received a transplanted liver on July 24, 2005, attends weekly support group meetings at Cedars-Sinai Medical Center as often as possible to share her experiences and offer encouragement to other patients. But because distance and schedules don’t always cooperate, she often turns to an online offshoot of the group, which enables everyone to participate, no matter how far away they live or what their physical limitations may be from week to week.
The idea of the online support group came to John Pappas, licensed clinical social worker in the Liver Transplant Program, because only a few patients are able to come to the face-to-face meetings; attendance ranges from about seven to 17 patients each week. About 70 have signed up for the online group so far.
“We have quite a few patients who are really sick and unable to attend, and we have patients who are working. The support group meets every Wednesday at noon, and it’s hard for some people to attend a mid- day group,” Pappas says, adding that many of the online patients participate from the Inland Empire and Ventura and Orange counties.
In fact, with patients on Cedars-Sinai’s liver transplant waiting list scattered throughout Southern California and in several other states, the Internet seemed an ideal vehicle to keep communication flowing. For its
nnovative use of technology, Cedars-Sinai has been named one of the “most wired” hospitals in the United States by Hospitals and Health Networks, a journal of the American Hospital Association.
Lori Dunn received her transplant just six months after being diagnosed with liver disease. She was sick enough to rise to the top of the donor organ waiting list and fortunate enough to have a compatible liver become available at the right time. But she knows other patients who have not been so “lucky” – people she met through the Wednesday support group. Now, when she can’t meet with them in person, she catches up electronically.
“I try to check in daily with the online group, especially for those individuals who are pre-liver recipients. A lot of them have been on the waiting list for quite some time,” Lori writes in an e-mail. “I started going to the (actual) group in September, two weeks after my release from the hospital. I’ve watched some of them decline in health since I’ve been attending. … It breaks my heart. They become like family. We share something so personal with each other.”
Lori developed cirrhosis of the liver even though she did not drink heavily, use drugs or have hepatitis C – “the things I thought would cause liver problems.” She did take quite a bit of acetaminophen over the years and wonders if that may have led to her liver damage. Whatever the cause, her health deteriorated rapidly, her thought process became clouded, and the Chatsworth resident was afraid she would not live to see her 50th birthday, which came and went last September.
“I feel the need to attend group meetings and to communicate online with those who are unable to attend in person, to share with them my experience and hope it will help them to understand what’s happening to them when they get certain symptoms,” says Lori, who describes a recent conversation with a woman who has been on the waiting list for a year.
“She said she is afraid to have the transplant,” Lori writes. “I told her I was afraid, too. But I was tired of feeling sick and weak. That gave me the incentive to be strong and accept the fact the surgery is going to make me feel better. She stated that she was tired. I told her the surgery will give her the energy she once had. I was also tired, but now I’m a ball of energy. I explained to her that you have to be a fighter when dealing with liver disease because of the confusing state of mind you’re in. The ammonia levels give you ‘the crazies’ and hallucinations.”
Another pre-transplant patient, Leslie Bohn, 51, of Los Angeles, has a couple of candidates willing to provide a partial liver donation. Because of the liver’s regenerative capacity, a friend or relative can sometimes donate part of his or her liver, with the organ growing back to its original size within a few months.
In 2002, after becoming increasingly aware of tingling and pain in her feet, Leslie underwent a series of tests to rule out diabetes, multiple sclerosis and other conditions that could precipitate these symptoms. In 2003, a liver biopsy performed at Cedars-Sinai found she had liver disease. Now waiting for testing and paperwork to be completed on the potential donors, the mother of a 19-year-old son and four stepchildren says her medical condition has declined, and she dreams of someday resuming a normal lifestyle, free of the dietary restrictions liver disease imposes.
“I am still in pain and my feet are really worse so that I often need a wheelchair. My stomach retains fluid and I have to limit my sodium like a hawk, as well as watch my intake of fluids. A transplant couldn’t come (soon enough) for my liking. I would just love to have an artichoke with a piece of baguette and a sliver of quality parmesan,” she writes. “I used to go to the (support) groups every week until I became too debilitated with my feet, etc., but I do check in on a regular basis (online) and think that John came up with a great idea.”
The virtual support group, in existence for about five months, is completely confidential and restricted to those on the liver transplant waiting list at Cedars-Sinai. Lori and Leslie agreed to allow their names and situations to be made public.
“It is basically an e-mail distribution list,” says Pappas, noting that the online group is currently exclusive to the Liver Transplant Program. “When a member sends an e-mail to the Cedars-Sinai Liver Transplant group, it goes to everyone in the group. And when someone in the group receives that message, they can either respond to the individual who wrote the e-mail or to the whole group.”
Although all of the specialty areas in Cedars-Sinai’s Comprehensive Transplant Program – heart, lung, liver and kidney/pancreas – provide support and educational groups, not all transplant centers do.
“It’s great that we have a high level of interest and are able to extend support to the online community,” Pappas says. “This is just another avenue for our patients to get more support and stay connected to the transplant program here at Cedars-Sinai.”