The folks at Beth Israel Deaconess Medical Center sent one-year and two-year post-donation surveys to the people who donated kidneys at their hospital from September 2005 through August 2012. Here are what they found:
- Surveys were only returned by half the living kidney donors (59% at one year; 47% at two years). In fact, only 37% of living kidney donors returned both surveys, while 31% returned neither.
- The non-responding living kidney donors were more likely to be young, non-white, and uninsured at the time of donation.
Non-insured living donors are less likely to seek post-donation follow-up and care, which puts both their short and long-term health at risk. It would be nearly impossible for transplant centers to justify the ethics of performing an elective and health-compromising procedure on an individual they knew doesn’t have access to healthcare – if they were ever asked to justify it, that is. Fortunately for them, there seems to be an implicit belief that living kidney donors don’t require healthcare maintenance and that any means necessary to “save” a recipient is perfectly acceptable. What happens to the person used as the sick recipient’s medical supply is rarely questioned.
- The kidney donors who reported physical health problems associated with donation were less likely to feel informed about donation risks than those without donation-related health concerns (63 vs.
16 %, p\0.001).
This is a no-brainer if you think about it. OPTN policy is deficient in regards to information about short and long-term risk. Consequently, transplant centers are notoriously lax in what they tell potential living donors. If you’re lucky enough not to experience immediate or short-term complications, there’s no reason for you, as the LKD, to think/believe you weren’t fully informed. It’s only when you’re a donor who *does* have post-donation issues, and you’re unprepared to address them, that it becomes obvious the hospital omitted some crucial information.
- 46% of living kidney donors report more post-surgery pain than expected.
- 8% reported worse scarring than expected.
- 30% described the recovery time as slower than expected.
- Compared to non-obese LKDs, obese donors were more likely to feel that surgical scarring was worse than expected (5 vs. 21 %, p = 0.03) and that the recovery took longer than expected (26 vs. 47 %,
p = 0.02).
It’s well known that obesity is an independent risk factor for surgical death and/or complications. Obesity also makes the kidneys work harder; many obese individuals with two kidneys experience hypertrophy. Consequently, if one is removed, the remaining kidney, already at 100%, has no capacity to further compensate, leaving the LKD with potentially dangerously low kidney function.
Just like the situation with uninsured living donors, transplant centers have *no* solid ethical ground for exposing obese people to this kind of risk. Luckily for them, no one ever confronts them on it.
- Employed living kidney donors reported being out of work an average of 5.3 (±3.1) weeks. Half were out of work for 5 weeks or more.
Take a gander at transplant-industry related websites and read what they say about recovery time and time off work. Kind of all over the place, aren’t they? Two weeks… six weeks… It’s no wonder people are ill-prepared.
- 18 % of living kidney donors reported donation-related health problems at one-year post-donation. 5 more living kidney donors reported new onset health problems in the second year after donation. These included persistent fatigue, chronic pain or discomfort, infertility, muscle weakness due to positional injury, and new-onset hypertension requiring medication.
- 31% of living kidney donors gained weight in the first year after donation. They gained a median 10.3 lbs, with an average mean = 2.2 ± 13.1, range = 6–93 lbs.
- 70% of living kidney donors reported out-of-pocket expenses. The most common expense was for travel (55%), medications related to donation (30%), meals during required transplant center appointments (27%), and lodging (10%).
Costs can be minimized by transplant centers not asking or expecting living donors to travel great distances to donate. But then again, they get paid for surgeries performed, so…
- Also, 20% did not have sufficient paid medical leave or vacation to cover the entire time away from work and consequently lost wages/income.
It wouldn’t be a stretch to think that part of this result is because transplant centers are minimizing recovery time. It’s also probably not a coincidence that approximately the same percentage reporting “insufficient paid leave” is similar to the percentage of LKDs that experience complications.
- 28% of LKDs reported a clinically meaningful decline in vitality at both follow-up time points, relative to pre-donation levels, which indicates a decline in energy and an increase in fatigue.
I didn’t intentionally save the best for last; the article was written that way. But this finding is quite important. The SF-36 Health Survey is a generic tool (meaning that it’s not targeted to a specific age or disorder), that measures eight quality-of-life dimensions.
“Vitality” is both a physical and mental component. The questions use words like “pep” and “nervous” and “energy” and “worn out” and “downhearted”; sentiments many living donors have expressed to me and elsewhere (online forums, etc). Transplant centers regularly minimize or ignore these symptoms, – or flat-out deny they’re associated with donation. (Or my favorite: claim they’ve never heard of such thing – not from their donors!).
But here we have one transplant center’s living kidney donors – folks who donated over a eight-year period – reporting a significant loss of “vitality”. Due to the kidney donation, of course, but still from varying origins: adrenal dysfunction, reduced kidney function, thyroid dysfunction, depression, etc.
Hopefully this result can be used to influence other transplant professionals’ attitudes and policies. Living donors deserve that much.
Rodrigue, J., Vishnevsky, T., Fleishman, A., Brann, T., Evenson, A., Pavlakis, M., & Mandelbrot, D. (2015). Patient-Reported Outcomes Following Living Kidney Donation: A Single Center Experience Journal of Clinical Psychology in Medical Settings DOI: 10.1007/s10880-015-9424-9