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The Importance of Accurate Living Liver Donor Data

If you’ve been following along, you know the articles about Ryan have claimed his to be the fourth live liver donor death in the US.

Danny Boone in NC
Mike Hurewitz in NY
Anonymous donor in Boston in late May 2010
Now Ryan in August 2010

Yet…

According to Surman (NEJM 2002): At present, there have been seven reported deaths among donors in the United States who have participated in all types of partial-liver donation.

A 2006 analysis* of adult-to-adult live liver donor literature lists Boone and Hurewitz, but also a liver donor that committed suicide AND 3 others that died ‘well after surgery’.

The 13th Annual International Liver Association Conference in 2007 revealed:

Exact data on morbidity and mortality are not known,” said Burkhardt Ringe, MD, of the Center for Liver, Biliary and Pancreas Disease at Drexel University College of Medicine in Philadelphia, Pennsylvania. Despite 4 independent reviews published in 2006, there are no accurate data on the number of donor deaths. Dr. Ringe also reported that there has in fact been a donor death at his center that is not reflected in the latest reports.

Trotter (2006) conducted a review of medical and lay literature, attributing 5 living liver donor deaths in the US as linked to the procedure#.

Yet despite repeated calls for a prospective registry, we still don’t have one. And despite the mandatory federal policy that transplant centers submit follow-up information on all living donors for 24 months, no reprecussions have come to those who don’t. Why is that?

ETA 8/20: I received an email from a long-term living donor activist who has been privy to some of the aforementioned medical records and instead of paraphrasing her sentiment, I’ll just copy/paste here.

“Not only is data important but so is the correct conclusion regarding cause of death. Neither Danny or Mike should have been in the OR. Danny had fatty liver and anatomic vascular issues noted on workup which the surgeon failed to tell him. And was only one surgeon for the donor and same one for the recipient. Danny was in trouble instantly.

Mike had two reasons not to be in the OR and they took him anyway. There were no culture reports in his medical record and was not an independent autopsy. Mt. Sinai did it. Mike died because they cut his liver in half and sent him to the surgical floor–not the ICU. He still had his epidural in when he died. He was numb so could never have told them he was in trouble. Had two sets of vital signs since left recovery room. The protocol for an epidural is every 2 hours. The surgeon never saw him postop–no medical notes in the entire postop chart once he left surgery until he arrested. They should have just thrown him to the curb. Someone on the street would have seen him in distress.”

*Middleton, Living Donor Liver Transplantation—Adult Donor Outcomes: A Systematic Review. LIVER TRANSPLANTATION 12:24–30, 2006.

#Trotter, JF. Documented Deaths of Hepatic Lobe Donors for Living Donor Liver Transplantation. Liver Transplantation 12:1485-1488, 2006.

Permanent link to this article: http://livingdonorsarepeopletoo.com/the-importance-of-accurate-living-donor-data/

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