Generally speaking, by the time a would-be recipient is listed for transplant (or told they should start looking for a living donor because it’s “better” or their “best chance at life“), they’ve been dealing with their chronic illness long enough to have a legion of doctors, specialists and probably an affiliation with a transplant program already in place.
Because of this, and the fact that living donors are an accommodating, giving lot, the person who presents themselves as the prospective living donor usually decides to have their evaluation and surgery conducted at the same facility as the transplant recipient, even if that means great inconvenience and traveling thousands of miles away from home.
Most women won’t see a hairstylist unless s/he comes with recommendations, and most people won’t hire a contractor to tile their bathroom floor without researching them first. Living donors, meanwhile, blindly choose a transplant center based on what’s good/easy for the transplant recipient and then take whatever surgeon they’re handed.
We do this because we’re prioritizing the needs of the recipient before our own, and because we trust that physicians, surgeons, hospitals, and nurses will care for us in the best way possible. While this belief is admirable, it’s not particularly realistic.
|Remember: the transplant system was created and has evolved around the needs of the recipient. The living organ donor is a means to the end goal of obtaining a transplant for the recipient.|
The above sounds harsh, but it’s also the only philosophy that will fully protect the (prospective) living organ donor from the sometimes ignorant, or misinformed, or naive, or well-intended-but-misguided attitudes of everyone connected to a hospital’s transplant program. In other words, the only true and best advocate a prospective living organ donor can have is themselves (and/or a truly independent living donor advocate, someone not connected to a transplant center in any way).
A prospective living organ donor has the right to choose their surgeon and surgical facility like any other patient, independent of the transplant recipient.
Here are the practical reasons for a living donors to have their evaluation, surgery and recovery at a transplant center convenient to their residence:
1. This is a person’s life and health we’re talking about. A living donor is already undergoing a needless, major surgery with untold risks; having the best (most trustworthy, lowest mortality/morbidity rate, high level of expertise, etc) surgeon and facility only makes sense.
2. A living organ donor is often discharged after two days, but complications can and do arise. The transplant program who performed the surgery is legally and ethically responsible for treating and resolving any complications. That would be impossible if the living donor returned home, hundreds or thousands of miles away.
3. Continuity of care is important in any patient’s treatment. If a living organ donor does experience a complication and seeks treatment at a different facility, s/he will be under the care of different practitioners who may or may not have access to the treatment records at the other hospital. They also may have very little experience or knowledge about living donors and their medical issues.
4. The transplant recipient’s insurance is responsible for any expenses related to the living organ donor evaluation or surgery. Any facility other than the transplant center where the surgery was performed won’t have the recipient’s insurance information. They will demand the living organ donor’s insurance information and most likely, the living donor will be billed for the treatment (and imagine if the living donor doesn’t have insurance). There have been media stories of such things; real occurrences are much higher.
(See Insurance page for more)
5. There is also the issue of support. Despite some living organ donors’ warm-fuzzy mental image of recuperating with their loved one recipient, the recovery period can be difficult – pain, bloating, fatigue, etc. No one (recipient, living donor, caregiver) should have to fake being strong for the benefit of anyone else during this period. Some living organ donors in this situation have also reported feeling neglected, abandoned or simply not prioritized by their mutual caregivers because they are perceived as ‘healthy’ while the recipient is still viewed as ‘sick’. Living donors deserve the same consideration and attention as the recipient; they have experienced a major surgical procedure, and remain at risk for complications too.
And let’s be honest, it’s easier to relax in one’s own home, swaddled in one’s favorite blanket and in charge of one’s remote control.
Do not be surprised if a surgeon or transplant center balks at the idea of the procedures occurring at different facilities. Stand firm. Donated organs are transported every day. All the kidney swaps and chains that keep making the news, compliments of the transplant center’s PR machines – those exist because technology can take an organ from point A to B, and keep it viable for many, many hours, sometimes days.
As one study concluded: “…patients who receive live donor allografts with CIT [cold ischemia time] durations as long as 8 hours have a slight increase in the rate of DGF [Delayed Graft Function] but were unable to demonstrate differences in renal function, AR [allograft rejection] or long-term AS [allograft survival].(233)
There simply is no legitimate* reason why a living donor and a recipient must be at the same facility.
If a surgeon or transplant program’s true priority is the care of the would-be recipient, they won’t let something like geography stand in the way of a transplant. To do otherwise is putting the center’s ego and profits first. And the last thing any living organ donor should do is put their lives and well-being in the hands of such an organization.
|Choosing a transplant center shouldn’t be only about proximity. Take the time to review the US live organ transplant program guidelines, and ask the appropriate questions of any facility you’re considering.|
(Also see our Questions to Ask when choosing a surgeon)
*There are a lot of not-so-legitimate ones, such as: revenue from the living donor’s surgery, egos that get in the way of transplant center cooperation, etc.