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Living Donor Death Rate, Part 3

Since I’m day four of flu recovery, I’ll make this a quick one….

I’ve talked about the mortality (death) rate of living donors before on this blog, mostly to point out that nobody really knows the true statistics and secondarily, to criticize the transplant industry for constantly minimizing and skewing the numbers to their benefit.

In a recent “see-living-donation-is-safe” piece of propaganda from Johns Hopkins transplant surgeons, this little nugget is buried deep within the Comment section:

“…Reported surgical mortality of approximately 260 per 10,000 cases for nondonor nephrectomy.”

A quick rehash: the transplant industry continues to claim the official mortality/death rate of living donors is 3 per 10,000 or .03%. This (loosely) translates into 1-2 living donor deaths per year*.

3 -> 260. That’s a big honking difference.

Unfortunately this is quite similar to the accepted overall hepatectomy (liver removal) rate of 4% while the living liver donor mortality rate is cited as much lower. It begs the question: why the discrepancy? (or in more cyncial terms: why the lies?)

The transplant industry will claim that since living donors are healthy, their mortality and morbidity (complication) rates will be different (ie lower) than other non-donor nephrectomies or hepatectomies. Certainly, the great majority of folks undergoing either procedure are suffering from some health problem deemed serious enough to warrant surgery while we are not. However, since it is considered unethical to perform surgery or organ removal on an otherwise healthy individual (except in the case of living donation, go figure), there is no way of knowing if there is a statistical difference between how a ‘sick’ person’s body reacts to a surgical procedure in comparison to someone who is healthy. In the interest of true scientific validity, one simply can’t make claims one presupposes to be true without evidence.

But herein lies the great contradiction. If we accept the transplant industry’s theory that living donors are their own population and not comparable to those dreaded ‘sick’ folks, then why have they been so lacksidaisical in collecting data on us? Why have they used us for over fifty years but not bothered to even gather our social security numbers until 1994? For scientific purposes, if nothing else, wouldn’t they want to know everything there is to know about us in order to crow about their success as life-saving surgeons?

Yet they don’t. They’ve actually resisted repeated efforts to implement a national registry (even though they’re quite capable of keeping one for transplant recipients and cardiac patients), and they complain whenever data collection is mandated. Now we find out they know, conclusively, the mortality risk of undergoing a nephrectomy but purposely hide it in order to make living donation sound safer than it really is. Hmmm.

ETA: I’m reading University of Virginia Health System’s document, “living kidney donor agreement of understanding” and they have risk of death listed as 1 in 4000.

3/10,000 – .03%
260/10,000 = 2.6%
1/4000 = .025%

 

*that would be within a 90 day period following surgery. OPTN’s own data reveals 3.3 lilving donor deaths in the US every year within 6-months of surgery, and 4.4 within the first 12 months.

 

Segev DL, Muzaale AD, Caffo BS, Mehta SH, Singer AL, Taranto SE, McBride MA, & Montgomery RA (2010). Perioperative mortality and long-term survival following live kidney donation. JAMA : the journal of the American Medical Association, 303 (10), 959-66 PMID: 20215610

Permanent link to this article: http://livingdonorsarepeopletoo.com/living-donor-death-rate-part-3/

2 comments

  1. Anonymous

    Hi. I just found this site, and am enjoying it. But on pg. 962 of Segev et al., they state that: "In our study of all live donors during a 15-year period in the United States, 25 of 80,347 donors died within 3 months of donation, for an estimated surgical mortality of 3.1 per 10,000 cases. This compares with reported surgical mortality of…approximately 260 per 10,000 cases for nondonor nephrectomy." So, if the higher, "260" figure is for procedures done *not* on healthy donors, why do you find that figure so disturbing for living donors? I mean, I'm sorry non-donors experienced that rate, and I am *all* for a proper donor registry, but I'm unclear about the significance for living donors. Thanks, from a person planning to donate.

  2. Cristy at Living Donor 101 dot com

    Some authors say the #1 cause of donor mortality is pulmonary embolism (blood clot) associated with pneumoperitoneum, which is the lap process of pumping the abdomen full of gas to perform the surgery. The risk of a blood clot is unpredictable and doesn't differ depending on the reason for the surgery. Instead of being honest about that little fact, the transplant industry obfuscates about the death rate by pulling comparison numbers such as these. Also in that same article, Segev stated "this [death/mortality] rate greatly exceeded the risk of death in the first 90 days for the NHANES III matched cohort compared with live donors."

    Segov's assessment fails to capture the foreign nationals who donate an organ then leave the country upon discharge (see the Rabbi in New Jersey who was arrested for ten years of organ trafficking), and limits the scope to 90 days – for a reason.

    OPTN's own data (which sucks; they lose track of 40% of living donors within six months AND they have no way of getting those pesky foreign nationals either) states that 4.4 living donors die every year in the US within 12 months of surgery. Why isn't that number used? A surgeon quoted in Deborah Shelton's articles for the St. Louis Post admitted that people can't comprehend statistics like 1 in 4000 or .03%; they need something more concrete. The surgeons, otoh, are afraid that if living donors hear "4 LDs die every year" less will choose to donate.

    I understand your need to believe no harm will come to you as a result of being a living donor; I was there once too. But the emphasis on mortality rates underscores the debilitating and lifelong complications that can also occur as a result of the surgery. Not to mention the psychosocial implications (depression, anxiety, PTSD) and the complete lack of support services for these issues. We know from studies on non-donor populations that living with one kidney increases the risk of hypertension, cardiac disease and death, and kidney disease and death. Yet as Housawi points out (Nephrol Dial Transplant (2007) 22: 3040–3045), only about 30% of surgeons discuss those matters with their potential living donors.

    It may give some people comfort to believe that because living donors are 'healthy', they are 'different' and won't suffer the same fate as others who have undergone a radical nephrectomy, but the truth is, data from people born with one kidney have reported an increased incidence of end-stage renal disease in approximately 20 years. The few studies done on living donors who have been diagnosed with ESRD disease have found the same thing. Despite what the transplant industry wants us to believe, we are no different than anyone else who loses a kidney. And that's the point.

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