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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. Sometimes it includes *all* deaths, no matter the cause, and sometimes it only encompasses deaths directly attributed to the procedure itself (Decided by whom and based on what criteria?).
These definitions excludes a lot: Patti McRoberts' four years on life support (250); 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 a kidney 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).
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. A 40 year old with an isolated renal tumor is not necessarily less healthy or more ill than a living donor at time of surgery.
The more recent use of 3/10,000 or .03% relies on OPTN's database. The one begun in 1994 when identifying info was finally collected, and the same one deemed "woefully incomplete" and "useless" for research or analysis in 2009 (136).
The statistic is derived by taking the number of living kidney donors in OPTN's database who have been reported dead (numerator) over the total number of living kidney donors in the database (denominator). Using approximate numbers, here's what this looks like:
39 living kidney donors died within 90 days
130,000 living kidney donors in the OPTN database
39/130,000 = 3/10,000
Is this the best way to determine a potential living kidney donor's risk of surgical mortality or death? Techniques have changed during that time, from open to hand-assisted or one-port laparoscopic, and living kidney donors aren't as “healthy” as they were 25 years ago (251). If we are to determine an individual's risk, we have to find a comparison cohort that matches the potential donor as closely as possible.
Using the entirety of OPTN's reported living kidney donors as the denominator in this equation also serves the purpose of keeping the mortality rate minimized. Put another way: Even if *all* of next year’s annually estimated 6000 living kidney donors died within the stringent 90 day time frame, it would only raise the mortality rate to 4%. I think we can all agree that’s a very disingenuous interpretation of a very disastrous scenario.
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.