Renal Disease & Kidney Failure in LKDs

Risk of Renal Disease and Kidney Failure in Living Kidney Donors

The true rate of kidney disease and renal failure in living kidney donors is unknown for a number of reasons:

  • Inequality and lack of access to health care.
  • OPTN didn’t exist until until 1987.
  • OPTN didn’t begin collecting social security numbers of living donors until 1994, making it impossible to track prior donors.
  •  OPTN didn’t require transplant centers to submit follow-up data until 2000, but only for one year (extended to two years in 2006).
  • OPTN, SRTR and independent studies have indicated that transplant centers are not complying with the follow-up policy and as of 2014, OPTN has done nothing to enforce it.
  • OPTN policy to award 4 points* to waitlisted living kidney donors didn’t begin until September, 1996. And transplant centers must indicate that a candidate is a prior donor in order to receive the points.

*This allocation is local, not national. Living donors DO NOT go to the ‘top of the list’.

These statistics do not include living kidney donors who are dialysis but not on the wait list, or those who have severe chronic kidney disease but have not been added to the wait list. In other words, this is not the totality of the incidence of living kidney donors affected by chronic kidney disease.

Muzzale et al (2014): “Among live donors, with median follow-up of 7.6 years, ESRD developed in 99 individuals in a mean of 8.6 years after donation. Among matched healthy nondonors, with median follow-up of 15.0 years, ESRD developed in 36 nondonors in 10.7 years… Estimated risk of ESRD at 15 years after donation was 30.8 per 10?000 in kidney donors and 3.9 per 10?000 in their matched healthy nondonor counterparts“(262)

Mjoen (2013) found: “Compared with controls, kidney donors had a significant 11.4 times increased risk of ESRD, 1.4 times increased risk of cardiovascular death, and 1.3 times increased risk of death from any cause, after adjusting for potential confounders.

The median time from donation was 18.7 years. ESRD was mainly caused by immunologic renal diseases.”(261)

As of December 31, 2012, 324 living kidney donors have been wait listed in need of their own kidney transplant, per OPTN data request.

This is a 10.2% increase since March 2011.

This is an increase from prior reports:

  • 294; 9 from 1987 through 1993, according to OPTN. 195 from April 1, 1994 – March 31, 2011 (185).
  • 194 from Jan. 1, 1996 – Feb 28, 2009. Median age at donation was 30.5 years; median time from donation to listing is 21 years (109) 
  • 177 between Jan. 1994 and May 2008. 63% were male, 42% were White, and 45% were African American. The mean age of those on the list was 47 years, compared to previous kidney donors, who had a mean age of 51. SRTR found that the time from making a donation to being listed was about 18-20 years. (60)
  • 148 between January 1, 1996, and March 31, 2007. Most LKDs later listed for a kidney had donated between the ages of 18 and 34 and to a full sibling. Of special concern was their finding that the median time from donation to listing was 21 years for white donors and 16 years for black donors (86)
  • 126 between 1988-2006. 5- were African-American. For both African-Americans and whites, males and those who donated before age 35 made up a larger proportion of the kidney donors on the waiting list than would be expected by proportion of overall kidney donors.(71)
  • 56 between 1990-2000. One died after transplantation and two died on the waitlist. UNOS admits this is an underestimation renal failure in LKDs (27)

[Note: The above numbers differ from those in a July 2011 blog post here because the above are published numbers while the blog post indicates numbers from requested OPTN data sets, which cover different time periods. For more info on LKDs wait listed for transplant, see here, and for minority living kidney donors’ risk here]

A presentation at the American Transplant Congress in 2009 revealed 88 living kidney donors now on dialysis. [not all people with end-stage renal disease on the waiting list are undergoing dialysis]

-47 (53%) Male
-46 (52%) White
-34 (39%) Black
-7 (8%) Hispanic
-1 (1%) Other

Also, 23 were also identified on the OPTN kidney waiting list during 1/1/96-7/31/08. Of these 23, 15 (65%) were male, 8 (35%) were White, 14 (61%) Black, and 1 (4%) Hispanic.(59) 

In the OPTN database, 58% of total Living Kidney Donors are female and 42% male, 71% are White and 13% Black.

Most patients in the earlier stages of CKD do not progress to kidney failure because of death due to cardiovascular disease (174)  

In Kido’s 2009 study of living kidney donors with end-stage renal disease, ESRD developed irrespective of pre-donation renal function or absence of risk factors such as proteinuria, hypertension, obesity or diabetes. In most cases, renal function stabilized for a long period (13.1 years) before declining after an initiating event. (67)  

Glomerulonephritis was the underlying cause of 33% of U.S. living kidney donors’ end-stage renal disease; hypertension was 25%; diabetes 9%; and other 33% (225).

In the case of isolated tumors or other kidney dysfunction or disease, current medical opinion holds that a nephron-sparing surgery should performed as opposed to removing the entire kidney. This is due to the real risks of nephron loss and renal insufficiency. In fact, five years after undergoing a radical nephrectomy (removal of entire kidney and surrounding tissue), patients had a 17% increased chance of death due to kidney failure (99).

If this is the case, why does the transplant industry continue to insist that living kidney donors are not harmed by the donation?

Below is a chart describing the stages of Chronic Kidney Disease. Based on transplant industry accepted calculations that living kidney donors maintain 70-80% of their pre-donation GFR, all living kidney donors leave the operating room with Stage 2 CKD.

It is imperative this information be included in a prospective kidney donor’s Informed Consent.

–More study results–

Of 167 living kidney donors from 1983-1995 at The Cleveland Clinic as of 1997, 4 donors (2%) had kidney disease (4).

In a long-term follow-up study of 464 living kidney donors, 84 were dead. Of those, 3 had kidney failure. Of the still living donors, 3 had abnormal kidney function and 2 had undergone transplantation themselves. (30)

Out of 400 living kidney donors, three developed renal disease, and one was on dialysis. (41)

In longitudinal study of 70 living kidney donors, one died of renal failure 13 years after donating to his brother. (106)

Last Updated: January 29, 2017