Dear Sherri,
Imagine my surprise to see that the full article is available:
http://onlinelibrary.wiley.com/doi/10.1111/j.1600-6143.2011.03609.x/fullYou ask, "The first sentence states there is limited data pertaining to ESRD after living donation. Is this because data has not been collected, living donors are not followed up or other reasons?"
The authors write: "To more precisely evaluate the risk of developing ESRD after kidney donation, we used the OPTN and Center for Medicare and Medicaid Services (CMS) databases to comprehensively determine the number of LKDs who donated between October 1, 1987 and March 31, 2003 and subsequently developed ESRD. We compared the characteristics of LKDs who developed ESRD with LKDs in general. In addition, we calculated the incidence of postdonation ESRD for LKDs who donated between April 1, 1994 and March 31, 2003."
and
"Segev et al. (10) found that LKDs had similar mortality rates compared with healthy age matched controls from the National Health and Nutrition Examination Survey (NHANES) after a median of 6.3 years postdonation. However, lack of comprehensive follow-up of donors precludes definitive assessment of the long-term risks of kidney donation. OPTN data collection currently only captures data through 2 years postdonation and no other national sources of these data exist."
You ask, "The other question I have as a living donor is, these 126 donors who developed ESRD, would they have developed ESRD regardless of donating a kidney or did having one kidney contribute to their ESRD?"
The authors write: "Notably, the median time from donation to ESRD was only 10.4 years and nearly 20% of the cases progressed to ESRD within 5 years. This rapid loss of renal function after intensive predonation evaluation raises questions about incomplete donor screening, inappropriate donor acceptance and inadequate postdonation follow-up and care. Our analysis of the relationship between LKDs with ESRD and their recipients did not suggest that postdonation ESRD was due to unrecognized familial renal disease."
and
"Unfortunately, we cannot definitively determine if kidney donation confers increased risk for ESRD. Annual ESRD incidence for the U.S. population cannot be extrapolated to LKDs as the extensive screening for renal disease for this group would be expected to dramatically lower the risk of renal failure. Estimates of ESRD rates for ‘healthy individuals’ from survey data such NHANES are incompletely validated and such data sources cannot provide a comparison group with similar levels of testing for renal disease."
You ask, "Why did they develop ESRD? Was it due to hypertension, diabetes, subsequent glomerular disease?"
The authors write: "While glomerulonephritis (33%) and hypertension (25%) were the most common diagnoses, analysis was limited by incomplete data as ‘other’ was reported as the etiology of ESRD in 33% of the cases. A significantly higher proportion of Black LKDs had ESRD from glomerulonephritis (39% vs. 22%) and hypertension (32% vs. 22%) than White LKDs (p = 0.02). Comparison of LKD and recipient ESRD diagnosis was also limited to 62 (49%) of LKD/recipient pairs where both diagnoses were specified. Of LKDs with specified diagnoses, 50% had the same cause of ESRD as their recipients (18 with glomerulonephritis and a total of 13 with hypertension or diabetes)."
and
"We also attempted to compare the etiologies of LKD ESRD with those of their recipients to ascertain whether certain recipient diagnoses were associated with higher postdonation LKD ESRD risk. Unfortunately, the analysis was severely limited by incomplete data as the etiology of both LKD and recipient ESRD was available in fewer than half of the cases. Excluding those with ‘other’ or ‘unknown’ recorded as the etiology of ESRD, the most common reported diagnoses among the LKDs with postdonation ESRD were glomerulonephritis and hypertension. When compared to White LKDs, a higher proportion of Black LKDs had ESRD from glomerulonephritis (39% vs. 22%) and hypertension (32% vs. 22%). Clearly, additional follow-up data is needed to determine if specific diagnoses entail increased risk to related donors."
You ask, "Were these donors educated on the importance of maintaining a healthy lifestyle, were they followed up yearly so disease could be caught early?"
Not addressed, except the notation of the limited follow up.
You ask, "Did these 126 donors get transplanted?"
The authors write: "Of the 56 458 LKDs who donated during October 1, 1987–March 31, 2003, 126 LKDs (0.22%) developed ESRD. One hundred and one (80%) of these LKDs were identified through records of initiation of maintenance dialysis, 24 (19%) were matched through placement on the OPTN kidney waiting list, and one received a preemptive kidney transplant without being waitlisted. Of those identified initially through dialysis records, 37% were subsequently placed on the kidney waiting list by the end of the study period."