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Questions to Ask
Most people wouldn't visit a hairstylist, or hire someone to tile their bathroom without a recommendation or research. So why do living kidney and liver donors entrust a hospital and surgeon they've never met or interviewed? Your health and life are more important than a hairstyle, so start asking questions!
(For info on Choosing a Transplant Center, click here)
1. How many donor laparoscopic nephrectomy (kidney removal) procedures has the surgeon personally performed?
'Proficiency' is defined differently in the U.S. than in other countries. U.S. surgeons are declared 'proficient' by OPTN after 15 cases as the surgeon *or* assistant, which is far fewer procedures than required in Europe. A 2015 review found the learning curve for laparoscopic donor nephrectomy (kidney removal) to be an average of 35 procedures (256), far higher than OPTN's minimum standard. These same researchers found "Improved intraoperative, patient and recipient outcomes [in] centers performing ≥50 [laparoscopic donor nephrectomies] annually".
Review US live organ transplant program standards
As indicated, not all surgeons utilize the same technique. Obtain as detailed of an explanation as possible, and research the specific technique. Do not be afraid to ask for a different surgeon or a different procedure (one-port versus hand-assisted laparoscopic, for example).
Meet with the transplant surgeon before the day of surgery!
Find out if the surgeon is a generalist or a specialist in urologic surgery. The latter is preferable. Also, while Final Rule 2007 requires separate teams for the transplant recipient and living donor, some living kidney donors have reported a husband-wife surgical team, one caring for the living donor and one for the recipient. This technically isn't a violation of the statute, but is something to be concerned about due to conflicts of interest.
2. If the transplant center is a teaching hospital, make sure a surgeon is doing the procedure and not a resident.
A living donor nephrectomy requires a much higher level of skill than a nephrectomy due to damage or disease. The less proficient the surgeon, the higher rate of complications. Do not allow yourself (or your kidney) to be a guinea pig.
Make sure the surgeon does not clip your renal vessel with a Hem-o-Lok or Weck clip. The FDA, as well as the manufacturer of the clip, cautioned against their use on 'high pressure' blood vessels in 2006 after 12 injuries and 3 LKD deaths, yet they are still in use.
In May 2011, the FDA issued another warning against their use after 3 more living kidney donors deaths (Michael King in 2008 and two in 2010).
And even after all that, surgeons still used the clip, resulting in Florinda Gotcher's death in June 2012.
3. What post-surgical complications has the transplant center and/or the surgeon experienced?
OPTN doesn't make living donor death and complication rates available to the public, so a prospective living donor will have to ask. Be suspicious if the center offers copies of published studies (such as those by Ibrahim or Segev) in lieu of real statistics.
Don't be lulled into complacency that a particular surgeon or transplant center hasn't experienced certain complications. Most transplant centers haven't 'lost a donor' until they 'lose a donor'. But also be suspicious of a transplant coordinator or other personnel attempt to offer a lengthy explanation for a living donor death or complication, especially if they try to place blame on the living kidney or liver donor (eg. something the living donor ate during recovery)
View living donor data from the UNOS/OPTN database with caution because their own task force has concluded it's 'woefully incomplete' and 'useless' for research or making predictions about living donors' health and well-being.(136)
In other words, obtain as much information on living kidney or liver donor deaths, mortality, complications, risks, and morbidity as possible, but understand that it cannot and will not tell the full and complete story, due to sixty years of US systematic neglect of living organ donors.
If anyone at the transplant center says, "Research shows that living donors live longer than non-donors", or any variation thereof, they are referring to the Segev et al. study "Perioperative Mortality and Long-Term Outcomes of Living Organ Donors".
A detailed discussion of the article's flaws is here, but in short, it only followed LDs for 6.2 yrs instead of the long-term (20+ years) it claimed, isn't prospective, and has no valid control group.
4. How many of the transplant center's recipients have a five-year graft survival, how many for 20 years, and what is the patient survival rate?
Yes, this refers to the recipient, but it's important for a prospective living kidney or liver donor to feel as if the surgeon and transplant center respects his/her sacrifice by ensuring the recipient and transplanted organ survive long-term.
Data is available on OPTN's website, although it always lags behind*. SRTR also publishes rudimentary center-specific data. Do not be afraid to ask questions regarding the transplant center's statistics, especially if they are 'below average'. If your queries are met with hostility or defensiveness, this says a lot about the transplant center.
*OPTN's transplant recipient-oriented data is 95% complete and compliant, tracing back to 1986. Not so for living donor data.
If the transplant center cites or provides a study from the University of Minnesota (Ibrahim et al "Long-term Consequences of Kidney Donation"), ask them to provide you a comparison of their evaluation and selection criteria in comparison to U of Minn (programs make up their own rules). while Ibrahim claims that over 3000 LKDs were followed long-term, only less than 300 were actually seen by the researchers and given physicals. The remainder self-reported on a survey. Hardly conclusive evidence of anything.
5. Where is the transplant center's Independent Living Donor Advocate (IDA)?
Final Rule 2007 requires all transplant programs to have an IDA, but the role of this person is ill-defined. Some transplant centers claim their Living Donor Coordinator is the IDA, but this is not the intent of the Final Rule. A Living Donor Coordinator's job is to schedule appointments for a prospective living donor's evaluation. They are employed by the transplant center. Do not confuse a Living Donor Coordinator with an Independent Living Donor Advocate.
Other transplant centers do not feel an IDA is necessary for related living donors and/or will not make one available unless requested. Ask for an Independent Living Donor Advocate.
6. What are the IDA's qualifications?
There is a lot of misinformation out there about living donation, so it is a prospective living donor's best interest to gather as much information as possible. Do not assume the IDA knows everything and do not be afraid to ask questions. Do ask for a second (third) opinion, and don't swallow any misgivings.
A 'donor buddy' is not an Independent Donor Advocate.. They are volunteers who've undergone no training whatsoever.
7. Will the Living Donor Advocate (or Living Donor Coordinator) still be available post-surgery/discharge?
Some advocates feel their job is only to guide the donor through the evaluation process and surgery. After discharge, their responsibilities are over.
While the Advocate is considered 'independent', remember they are usually employed by the transplant center, thereby creating certain priorities.
Also, and this is incredibly rare but still something to be aware of, some individuals in this position believe their job is to 'support' the prospective living donor's decision to donate, regardless of the dangers, warning signs or contraindications. In truth, an Advocate should represent the prospective donor's best interests, even if they conflict with the donor's stated wishes. An Advocate should address uncomfortable but crucial topics.
8. Is the Living Donor Advocate a living kidney or liver donor?
9. Is the Living Donor Coordinator a living kidney or liver donor?
Most likely not. If this is the case, don't be afraid to ask if s/he has ever been tested, or why s/he would be interested in such a specialized position. It is important to 'get a feel' for their philosophy and opinions, and how likely they will protect your safety and well-being.
10. Some living kidney donors have ended up on the waitlist in need of their kidney transplant. What provisions does the transplant center have in place for that possibility?
Some LKDs have been told they 'go to the top of the list', which is factually incorrect. OPTN gives prior living kidney donors four priority points (they give certain other patient populations priority points too). Make sure everything told to you about this topic is IN WRITING by a person of authority.
11. What mental health or support services are available to living donors post-surgery/discharge?
Transplant centers are not requied to, nor do they, provide structured aftercare and/or support services for living donors. Most transplant centers will probably say they can make referrals to in-house mental health providers, but that has about as much significance as picking a therapist out of the phone book. Just because the provider is employed/referred by the transplant center does not mean s/he has any knowledge of living donors or living donor issues.
Many living donors who have experienced grief, depression, anxiety, anger, PTSD or other psychological complications have found professionals with PTSD specialties to be very helpful. Consider joining email lists or message boards or forums where living donors gather to find someone who could offer a suggestion or referral in your area.
See our page Living Donor Expenses and Living Donor Bills and Health Insurance for information on how to protect yourself from being billed for any living donation related expenses.