Myth: Living Donation is perfectly safe. After all, you're only giving up a spare; a person can live a normal life with one kidney!

Truth: While the procedure to remove a kidney from a living donor has become more non-invasive, meaning that pain, time in the hospital and recovery has been lessened, no major surgery is without risks.

Some transplant surgeons, centers and national transplant-related organizations refer to the laparscopic nephrectomy as having 'minimal risk'. However, federal guidelines define the term 'minimal risk' as meaning "that the probability and magnitude of harm or discomfort anticipated in the research are not greater in and of themselves than those ordinarily encountered in daily life or during the performance of routine physical or psychological examinations or tests." (eg. having a  hangnail)

Living donation is not 'research', nor does it fit the definition of 'minimal risk'. Case Western Reserve University's Bioethics Program issued a statement at an ACOT May 2007 meeting protesting the misuse of the term in regards to living donors.(62)

The immediate as well as the—insufficiently known—long term risks of a unilateral nephrectomy in a perfectly healthy person cannot be called minimal or negligible (96)

The fate of living donors is still unanswered:

- Organs have been taken from living donors for 50 years, but there were no rules, regulations, policies or oversight regarding living donors until 2006!

In fact, current law in the U.S. really doesn't give any organization authority over living donor transplants, transplant programs, or the care of living donors themselves.  UNOS/OPTN is slowly developing policy but compliance is not mandatory. In addition, OPTN really doesn't have the authority to create or enforce rules regarding living donation and living donors.

- In the U.S. there is no long-term required follow-up for living donors, nor is there a database to keep track of living donors' health or well-being. 

- One study indicated up to 40% of living donors are uninsured. This means they will most likely not see a physician if a complication occurs. Consequently, the complication rate for living donors is severely underreported.

- After a kidney is donated, the remaining kidney will most likely grow to compensate for the missing organ, eventually providing 70-80% of normal function of a healthy person with two kidneys. (Apparently this does not occur in 'older' donors, or to the same degree).

However, kidney donation removes 50% of nephron mass instantaneously, and while the remaining kidney does work harder, it will never completely replace that loss of mass.

-UNOS loses track of 40% of living donors six-months post-surgery, and another 40% before the one-year mark. 

As for the idea of the donated kidney as a 'spare' - is a person's second eye, arm or lung a 'spare'? While a person can survive with one lung or leg, most would agree that quality of life is diminished as a result.

Myth: Living donor organs are better than deceased organs.

Truth: Living Donor organs have twice the life expectancy as deceased or cadaver organs, a prime reason why the transplant community is encouraging living donation over increased deceased donation rates, or even prevention of end-stage renal disease. However, living donors receive NO medical or health benefit from relinquishing an organ. In fact, we assume many health and psychosocial risks. So who is defining 'better'?

- Attempting to alleviate the 'organ shortage' UNOS/OPTN has allocated the use of 'expanded donors'. This is any donor 60 or older, or one between 50-59 with two of the following conditions: death due to a stroke, history of high blood pressure, or signs of less than normal kidney function before death. Expanded donor kidneys are a reasonable option for older recipients, to maximize the overall usefulness of all donor organs.

- The US Renal Data System's (USRDS) latest data reports the median age of ESRD (end-stage renal disease) to be 64.4 years of age. Should the kidney of a 25-year-old be transplanted into the body of a 70 year old? These are the questions surely to be asked as the 'organ shortage' continues, and ask Paired Kidney Donation becomes more widely used.

Myth: 17-20 people die every day in the U.S. because they don't get a kidney.

Truth: Studies have shown that 20% of people with end-stage renal disease make the decision to  stop the treatment of their end-stage renal disease due to advanced age or other physical ailments. Their deaths 'inflate' the final statistic.

Also, in 2003, UNOS changed policy allowing candidates/recipients considered 'inactive' (meaning they are ineligible to receive an organ, due to being too sick, not sick enough, or other reasons) to accrue time on the waiting list indefinitely.

This has ballooned the waiting list. At the end of 2003, 16.1% of candidates were inactive as compared to 32.8% at the end of 2008. (57) More telling, 52% of patients on the waiting list who died in 2007 were 'inactive' as compared with 31% in 2003 (81).

This bloating of waiting list registries and deaths has the effect of misleading the public in regards to the 'need' for donated organs and could falsely induce people to become living donors.

Finally, a transplant is not a cure. Most recipients will need at least one additional transplant within their lifetime, so a certain percentage of those on the waiting list have been there before.

It is not a lack of a kidney that kills people, it is their disease.

And P.S. deceased organ donation has increased 25% since 2004, but you don't hear groups such as the National Kidney Foundation or transplant surgeons crowing about that, do you? (81)

Myth: Only 5% of living donors will suffer complications.

Truth: Transplant surgeons prefer to use a very strict definition of 'complications' referring only to those physical issues that require re-hospitalization in the first week or so following the initial surgery.

Keep in mind that transplant centers conduct a one-month post-surgical follow-up and then have no contact with their living donors afterward. Also, many living donors live far away from their transplant center so their post-surgical issues would not be reported. And unfortunately, many transplant centers encourage living donors to seek out their primary care physician so they don't have to report any complications in their official data.

This statistic does not count any psychosocial (depression, anxiety, PTSD, financial difficulties, etc) or long-term complications (hypertension, chronic fatigue, renal disease, suicide etc.) related to living donation.  Ironically, some health insurance companies have refused to pay for a disorder/disease they feel is related to living donation, even if it occurs many years later, yet the transplant community as a whole refuses to acknowledge these same issues are related to living donation in any way.

The Living Organ Donor Network reported post-operative and wound healing complications of 23% and a one-year complication rate of 37.5% (28), and another study reported nearly 10% of male living donors suffer from testicular swelling and sensitivity. Since the overall majority of living donors are female, this particular statistic would be skewed downward when examined as a whole.

**Source: Insurability of Living Organ Donors: A Systematic Review. R. C. Yang, et al. American Journal of Transplantation (2007) 7:6, 1542-1551.

#Source: Carreyrou, John. "Doing a Volume Business in Liver Transplants" . Wall Street Journal; Nov. 21, 2008.

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