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Living Donor Myths
Myth 1: 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 or complications.
Some transplant surgeons, centers and national transplant-related organizations refer to the laparoscopic 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 over 50 years, but there were no rules, regulations, policies or oversight regarding living donation until 2006! Identifying information (aka social security numbers) weren't collected until 1994 (136).
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. OPTN is supposed to developing policy but has not done so. In addition, OPTN doesn't have the statutory authority to create or enforce laws 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/registry to keep track of living donors' health or well-being.
- One study indicated up to 20% of living donors are uninsured. Another reports that 78% of transplant center personnel prefer follow-up to be done by the LDs primary care physician (130). This reduces the likelihood of a living donor seeing a physician if a complication occurs. Consequently, the complication rate for living donors is severely underreported.
- Kidney donation removes 50% of nephron mass, which is never replaced (nephrons being the actual filters of the kidneys). The remaining kidney does not grow, which denotes cell replication, but begins to hypertropy and hyperfiltrate, meaning the individuals cells themselves swell in reaction to the added stress of doing all the work. (see Kidneys page)
According to some studies, this does not occur in older or obese donors, or to the same degree.
-Since 2000, OPTN has required transplant centers to submit one year of follow-up on all living donors, extended to two years in 2006. Yet 40% of living donors are lost by six-months post-surgery, and another 40% before the one-year mark. (61) In 1999, OPTN's own data task force called the OPTN database 'woefully inadequate' and invalid for analysis (136).
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 2: Living donor organs are better than deceased organs.
Truth: Living Donor grafts have a longer average life span than 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'?
- In an attempt to alleviate the 'organ shortage' OPTN/UNOS 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, but again, no one how an expanded donor's health is compromised by the loss of a kidney.
- 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? Or should an 84 year old be given a transplant at all? These are the questions surely to be asked as the 'organ shortage' continues, and Paired Kidney Donation becomes more widely used.
Myth 3: 17-20 people die every day in the U.S. because they don't get a kidney.
Truth: In 2003, UNOS/OPTN 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 2007. (57) More telling, 52% of patients on the waiting list who died in 2007 were 'inactive' as compared with 31% in 2003 (81).
- Studies have shown that 20% of people with end-stage renal disease make the decision to stop their treatment due to advanced age or other physical ailments. These deaths 'inflate' the final statistic.
It is not a lack of a kidney (or liver) that kills people, it is their disease. Transplants are not cures.
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 4: But the waitlist is growing exponentially, and people have to wait longer for an organ than ever before!
The rate of increase in the number of active patients has declined in recent years. From 1999 to 2003, there was a 23% increase in active patients (corresponding to an average increase of 5.3% per year). In 2004, there was a slight decrease, and the yearly percentage increase afterwards was 2%, 2%, 3% and 4% in 2008 (compared with 2007). (138)
Among new candidates listed between 1999 and 2005, there has been relatively little change in the median time to receive any kidney transplant, that is, from either a Deceased Donor or Living Donor. (138)
According to OPTN's 2011 presentation, the waitlist has been flat since 2007 (see our 'truth about the waitlist' page for more information)
Myth 5: Because of anti-rejection meds, HLA or tissue matching doesn't matter.
Graft (transplanted organ) survival is still correlated with degree of HLA match. See our Blood and Tissue Match Compatibility page for instructions on how to view the latest national data on OPTN's website.
Myth 6: Only 5% of living donors will suffer complications.
Truth: Transplant surgeons prefer to use a very strict definition of 'complications' referring only to those issues requiring 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 usually have no contact with their living donors afterward. Also, some 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 (130) so those complications may not show up 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.
Myth 7: Living Kidney Donors, if they ever need a transplant, go to the top of the waitlist.
The list isn't really a list in the truest sense; it is more like a lottery where each would-be recipient and each available organ has a list of particulars (blood type, HLA, etc) which must be matched as closely as possible.
According to OPTN's policies, a living kidney donor will be given four points of priority, but only locally, if s/he is ever listed on the wait list in need of their own kidney transplant. A point is approximately equivalent to one year on the waitlist. Since wait time on the list only applies to kidneys, these four points do not 'transfer' or have any impact on a living donor's (any organ/tissue) chances of receiving any other deceased donor organ.
As of 2011, there are also discussions to change 'wait time from listing' to 'wait time since dialysis'. Since transplant centers are encouraging pre-emptive transplants (prior to dialsysis), this will also affect perceived wait time.
** Source: Insurability of Living Organ Donors: A Systematic Review. R. C. Yang, et al. American Journal of Transplantation (2007) 7:6, 542-1551.
# Source: Carreyrou, John. "Doing a Volume Business in Liver Transplants" . Wall Street Journal; Nov. 21, 2008.