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Living Kidney Donor Death/Mortality
The actual living organ donor death/mortality rate is simply unknown. Since no one collected identifying information on living donors prior to 1994, there is no way of discerning the fate of living donors from 1954-1994. Second, even when OPTN did begin collecting the social security numbers of living donors, there were no quality control safeguards put in place to ensure the data was correct. Third, the definition of death/mortality is not standard. Most commonly, it refers to death within 90 days of the surgery and in a manner that is directly attributed to the procedure itself (Decided by whom, and based on what criteria?).
Some would claim this strict definition makes sense, but it also excludes a lot: the living kidney donor put into a permanent vegetative state before dying some time later; Rita Kocian, who was accepted as a living kidney donor despite known mental health and drug abuse issues, later abandoned by her transplant center after suffering complications (including chylous ascites), and eventually overdosing; and others like 17-year-old Daniel Huffman who gave up a promising football career to donate to his diabetic grandmother then was forced to leave college to care for her, and eventually committed suicide.
The living donor experience is not as simple as some would like to believe.
Transplant centers are required to report all living donor deaths to OPTN, but because not all living donors live near their transplant center and/or some prefer to receive medical care elsewhere, some can and have gone unrecognized.
The mortality rate for non-donor nephrectomies (kidney removals) is 260 out of 10,000 or 2.6%(133); however, the transplant industry continues to insist the mortality rate for living kidney donors is 3/10,000 or .03%. The origin of this latter statistic is a study from 1992 wherein the researchers conducted a telephone survey and asked transplant programs if they'd had any living kidney donor deaths (172).
Highly unscientific, to say the least, yet it's been repeated ad nauseum for the past almost twenty years.
Just because the circumstances of a living kidney donor's surgery is different doesn't mean the risk lessens.
The following is a succinct illustration of the problem:
Patient One: A 40 year old with an isolated tumor of the left kidney. The options - remove the kidney laparoscopically or remove only part of the kidney to preserve kidney mass.
Nephron sparing surgery, the latter option, has become the preferred treatment because reduced kidney function is associated with higher long term risks for cardiovascular disease.
Note: It is difficult to get at the stats since for many years there
was no procedure code for lap nephrectomy so all nephrectomies were
under the same code.
Patient Two: A 40 year old is evaluated to donate a kidney. His risks are the same as the patient above if the entire kidney is taken, but also includes the delicate nature of removing a piece of artery, vein, ureter, etc. [all needed for transplantation into the recipient]
Ron Herrick, the first living organ donor, had a stroke in 2002, was diagnosed with diabetes, spent the last decade of his life on dialysis, and died two months after a cardiac procedure in 2010. He was 79 at the time of his death, and his older siblings attended his funeral.(209, 210)
Living kidney donors are people with one kidney. An isolated renal tumor does not make one 40 year old sicker than a living donor at time of surgery.
According to official OPTN data, in the years 2000-2009:
23 living kidney donors died within 90 days (2.3 per year)
44 living kidney donors died within 12 months (4.4 per year)
The notes from the August, 2010 ACOT meeting include a statement by Dr. Fung of the Cleveland Clinic Foundation regarding "four reported deaths in kidney donors this year in the U.S." While some would argue that not all living donor deaths are the result of the procedure, Fung is referring to those which have been attributed to the surgery itself. He also said, "The fact that there were four kidney deaths with almost no publicity is...problematic." (171) We agree.