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Ethical Considerations Informed Consent Living Donor Protections Living Donor Research Living Donor Risks Living Kidney Donor

Levey’s Living Kidney Donor Transplantation in the US, part III

Yep, I’m finally getting back to this….

These data are consistent with the excellent long-term outcomes of young adults who underwent nephrectomy for trauma

The reference to this:

Forty-five year follow-up after uninephrectomy.
Narkun-Burgess DM, Nolan CR, Norman JE, Page WF, Miller PL, Meyer TW.

Even though it was published in 1993, this is the famous report on 62 WORLD WAR II veterans (all male, median age of 25) that has justified fifty years of kidney harvesting from the living. Bear in mind how much different Americans’ lifestyles were then.

However, there remains some uncertainty because kidney donors typically are screened more carefully for comorbid conditions than controls in these studies.

This is actually important. It means that the control populations compared to living donors not only have two kidneys as opposed to one, they may have undiagnosed or undetected health risks (cholesterol, BMI, hypertension, etc). Once again, as many living donor advocates have argued, all of these studies are invalid because living donors are not being compared to their two-kidneyed counterparts.

Values for GFR were lower and values for albuminuria were higher with older age and longer time since transplant. In our opinion, these data are adequate to provide reassurance of the long-term safety of kidney transplantation from living kidney donors.

The sentence prior to this quote refers to a study conducted a median 12 years post-donation. We know that LKDs wait listed were usually 20 years out, and we know that GFR naturally declines with age, especially post-50. We also know that in the general US population, the average age onset of end-stage renal disease is 64.5 years of age.

SO, if the average living donor was 35 years of age in 1988 and 41 in 2008 (see Cooper/Davis reference below), 12 years just isn’t a long enough time to draw any decent conclusions.

And just how in the hell are lower GFRs and higher protein readings a good thing?

Approximately 12% and 4% of donors have estimated GFRs or urine ACRs that meet the definition for chronic kidney disease (GFR 60 mL/min/1.73 m2 or urine ACR 30 mg/g)

This statement is gleaned from a meta-analysis done in 2006 which covers only a small percentage of all living kidney donors. Truth is, since NO ONE bothers to collect data on living donors (OPTN/UNOS just started in 2000, but only for one year, expanded to two years in 2006), there is NO WAY TO KNOW HOW MANY LIVING KIDNEY DONORS HAVE CHRONIC KIDNEY DISEASE.

It is now widely accepted that these kidney measures are associated with an increased risk for future adverse events in the general population, including all-cause and cardiovascular mortality and kidney disease, even after adjustment for known risk factors

And yet how many prospective living kidney donors are warned of these possibilities during the informed consent process? Very few. And how many would-be recipients are told they are exposing another person to these sorts of risk? None.

However, there have been no large studies of cardiovascular and kidney outcomes in kidney donors.

Exactamundo.

In our view, the uncertainty may be large enough to cause discomfort in counseling some potential donors and in medical decision making after donation.

Discomfort? Could that be more minimizing? Why don’t we be honest and say it what we really mean – we have no idea what happens to living kidney donors long-term, but we know there are serious risks (especially in specific populations), yet we’re going to ignore all of that because our priority is obtaining a transplant for the recipient.

Uncertainty in the decision-making process potentially compromises both donor autonomy and protection, thereby threatening the present system of living kidney donation.

The following sentence begins “in our opinion…” and the very next uses the verb “suspect”. Last time I checked, the justification for performing an unnecessary surgery on a healthy person, and removing a crucial organ for the treatment of someone else wasn’t to be based on opinions and suspicions. That is not good science.

The first line of the authors’ conclusion says this: It is a privilege to counsel potential kidney donors and recipients and see first hand the benefits that accrue from the gift of life.

Some time ago, an employee of a transplant center made a remark on a living donor-related email list about her living donors’ positive experiences. I emailed her off-list (she was a Transplant Coordinator, sometimes the double-hatted Living Donor Advocate), and cautioned her about making such statements, because not all living donors fared well, and such declarations served to disenfranchise their experience.

She responded in a very defensive manner, saying that HER donors hadn’t expressed any problems at all. I posed the question, “Why would those living donors contact you? You were complicit in causing their trauma.”

Obviously, I never heard from her again.

But of course, this is the problem with the transplant industry in general. They are divorced from the consequences of their actions, especially in regards to living donors. Instead, they surround themselves with other transplant center employees (see NKF’s newest email list solely for ‘living donor advocates’ for example), which only serves to reinforce their very one-sided perspective.

We would never abide a substance abuse counselor who had never been exposed to the consequences of addiction. Why do we accept it in regards to those who mentor and counsel living donors?

Davis CL, & Cooper M (2010). The state of U.S. living kidney donors. Clinical journal of the American Society of Nephrology : CJASN, 5 (10), 1873-80 PMID: 20634322

Levey AS, Danovitch G, & Hou S (2011). Living donor kidney transplantation in the United States–looking back, looking forward. American journal of kidney diseases : the official journal of the National Kidney Foundation, 58 (3), 343-8 PMID: 21783290

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