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16 MARCH 2018

Living Donor Liver Transplant Webinar

In collaboration with University of Pittsburgh Medical Center (UPMC), the American Liver Foundation presented a webinar, Living-Donor Liver Transplantation: What Donors and Patients Need to Know, on March 8th.  Some of the statistics shocked even me–115,000 people are on lists and awaiting new livers or kidneys.  An average wait is two to three years and 1,500 of them will die each year without receiving one.  Transplantation from living donors could change this, but only 3% of the people on the list will receive a living-donor liver transplant.

Our first presenter, Swaytha Ganesh, MD, medical director of the UPMC Living Donor Transplant Program, shared these statistics.  She also conveyed that, although living-donor transplants are fairly common in Asia, the percentage in the United States is very low and not increasing.  Dr. Ganesh made the point that patients who receive a liver from a living donor make a quicker and fuller recovery and, if the donors are related (which is not necessary, although it is preferable) there is a better genetic match.  The donation is usually deeply satisfying to the donor and makes the waiting list a little shorter, giving yet another person a chance for life.

Dan Martinsen, who became his brother’s living-donor in 2007, provided his perspective.  His brother, diagnosed in 2006 with primary sclerosing cholangitis, rapidly developed bile duct cancer.  Although the cancer was treated successfully with radiation and chemotherapy, his brother needed a new liver.  Dan, with the support of all other family members, stepped up.  He pulled no punches in describing the level of commitment that living-donors need to make: removal of up to 70% of their liver, a 12 -14 hour surgery and four month recovery, with marked weakness in the early weeks while the donor’s liver regenerates.

Despite the donors’ challenges, Dan is very positive about living-donor transplants, saying, “As someone who was a living donor almost 11 years ago, I believe that raising awareness of the living donor option continues to be vital.  I applaud the American Liver Foundation and University of Pittsburgh Medical Center for hosting this webinar on the subject. With the demand for vital organs still far surpassing their availability — in particular, for those needing a liver — many, many more lives like my brother’s could be saved if more potential living donors and recipients are educated about the facts and availability of this option. It is truly a miracle of medicine and needs to be more widely publicized and understood.”

Finally, Donya McCoy described her experience as a liver champion for her daughter, Kennedy.  A liver champion takes the lead in locating a donor and acts as advocate and intermediary throughout the donation process.  In Donya’s case, her daughter was born with a rare metabolic liver disease and by age three needed a transplant.  It was determined that family members were not eligible to be donors. Donya reached out via social media, engaging friends via Facebook, Twitter, Instagram and LinkedIn.  Her contacts shared her post and within a week 27 people volunteered to be tested for their suitability as a living-donor.  Incredibly, an individual Donya had known casually as a classmate in high school became Kennedy’s donor and remains a close family friend, three years after the little girl’s lifesaving surgery.  Donya pointed out that word of mouth is such a valuable tool and recommends reaching out to faith-based organizations, sports and social groups.

The hour-long webinar ended with a question and answer session.  Help Line staff are also standing by to assist with questions.

ALF supported the webinar with numerous mentions on our own social media channels. Approximately 200 individuals logged on–medical professionals, patients, and family members. We have archived the webinar on the ALF website and numerous individuals have taken advantage of it in the first week.  If that doesn’t yet include you, please go to:

Tom Nealon
American Liver Foundation

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