Waitlist Zero - living donor petition

Support Waitlist_Zero’s efforts to support living donor kidney donations! Currently they have put together a petition to push the Health Resources and Services Administration (HRSA) to do more. One reason they haven’t is they believe transplant surgery is risky. One place this is addressed is here (myth number 14). As a living donor from 14 years back, this one hits home for me (my daughter is still doing great by the way)

Plugger, I am glad to hear that you and your daughter are doing well. But, the reality is, there IS an increased risk of death and ESRD to kidney donors compared to people who were healthy enough to donate but chose not to. Here is the abstract of a recent study from the Netherlands that found this. There are lots of comments, which I can’t see, so I don’t know what they said or how the authors answered. At any rate, the takeaway for me (and everyone has to decide this for themselves) is that it still makes sense to donate to someone you love, but not necessarily to push for altruistic donation…

Kidney Int. 2014 Jul;86(1):162-7. doi: 10.1038/ki.2013.460. Epub 2013 Nov 27.
Long-term risks for kidney donors.
Mjøen G1, Hallan S2, Hartmann A1, Foss A1, Midtvedt K1, Øyen O1, Reisæter A1, Pfeffer P1, Jenssen T1, Leivestad T3, Line PD1, Øvrehus M4, Dale DO1, Pihlstrøm H1, Holme I5, Dekker FW6, Holdaas H1.
Author information

Abstract
Previous studies have suggested that living kidney donors maintain long-term renal function and experience no increase in cardiovascular or all-cause mortality. However, most analyses have included control groups less healthy than the living donor population and have had relatively short follow-up periods. Here we compared long-term renal function and cardiovascular and all-cause mortality in living kidney donors compared with a control group of individuals who would have been eligible for donation. All-cause mortality, cardiovascular mortality, and end-stage renal disease (ESRD) was identified in 1901 individuals who donated a kidney during 1963 through 2007 with a median follow-up of 15.1 years. A control group of 32,621 potentially eligible kidney donors was selected, with a median follow-up of 24.9 years. Hazard ratio for all-cause death was significantly increased to 1.30 (95% confidence interval 1.11-1.52) for donors compared with controls. There was a significant corresponding increase in cardiovascular death to 1.40 (1.03-1.91), while the risk of ESRD was greatly and significantly increased to 11.38 (4.37-29.6). The overall incidence of ESRD among donors was 302 cases per million and might have been influenced by hereditary factors. Immunological renal disease was the cause of ESRD in the donors. Thus, kidney donors are at increased long-term risk for ESRD, cardiovascular, and all-cause mortality compared with a control group of non-donors who would have been eligible for donation.

Dori,

You and the people associated with Home Dialysis Central have been GREAT over the years answering questions I’ve had, and so many others have had about home dialysis and dialysis in general. However I wasn’t sure what to make of the above study, so I asked the people from Waitlist Zero what they thought of it - they and others felt it was flawed (they are very familiar with it).

American Journal of Transplantation quotes:

“the mean age for donors was 46 years and that for controls was 38 years”
“age difference alone could account for the difference in mortality”

http://onlinelibrary.wiley.com/doi/10.1111/ajt.12804/full

Also I believe the AJT article mentioned the Kidney Int. study didn’t take into account whether the donor and the person receiving the kidney were related or not, heredity sometimes being a factor in kidney disease as you know.

However, Waitlist Zero did admit there could be a slight increased risk of ESRD. But I’ll let you look at the numbers - most from a JAMA article they gave me:

Estimated lifetime risk of ESRD:

3.26% - General Population
0.90% - Living Donors
0.14% - Healthy Non-donors (screened potential donors)

http://dialysisethics2.org/open_images/studies/JAMA%20ESRD%20after%20Donation.pdf

I’ll add the odds of me getting ESRD are lower than the odds I’ll die in a car crash (1.18%) - not going to stop driving!