Categories
Follow-Up Living Donor Research Living Donor Risks Living Kidney Donor

Surgical Complications of Living Kidney Donation

WARNING: It’s imperative to remember that during the years of this analysis (2008-2012), more than 1/3 of living kidney donors were reported “lost” to follow-up. Many living donors with post-donation problems have reported that their transplant center denied their symptoms were related to the donation, and refused to treat them. It’s not a stretch to assume these same centers never reported those symptoms to OPTN as they were required to do. It’s best to assume the numbers below are *under*estimates of the true incidence of donation surgical complications.

 

“Overall, 16.8% of donors experienced a perioperative complication, most commonly gastrointestinal (4.4%), bleeding (3.0%), respiratory (2.5%), surgical/anesthesia-related injuries (2.4%), and “other” complications (6.6%)”

African Americans had increased risk of any complication.

Other significant correlates of Clavien grade IV or higher events included obesity, predonation hematologic and psychiatric conditions, and robotic nephrectomy

Annual center volume >50 was associated with lower risk.
Ak?nc?, S. (2016). Re: Perioperative Complications after Living Kidney Donation: A National Study Journal of Urological Surgery, 3 (3), 103-103 DOI: 10.4274/jus.2016.03.023

Categories
Follow-Up Living Donor Research Living Donor Risks

adrenal incidentalomas in potential kidney donors

You’re probably asking “What is an adrenal incidentaloma?” Well, I took the trouble of googling it for you, and in short, it means a lesion or mass bigger than a certain size hanging out on one’s adrenal gland. Usually, these AIs are found incidentally, during a medical scan of some sort that have nothing to do with the adrenal gland.

In other words, asymptomatic folks can have AIs.

 

The researchers decided to look for these little buggars in potential living kidney donors. Makes sense since they’re already exposing them to a battery of tests and scans anyway. Apparently 4.2% of their 673 subjects did have these suckers, and according to the paper, that’s a lot.

What I’m wondering, and what the authors don’t say, is: Which adrenal had the AI and which kidney was removed for donation? And secondarily, if the AI was on the left kidney, and the left kidney was removed, did the severing of the blood to the left adrenal (in combination with the AI) cause the LKD any post-donation adrenal malfunction? Or vice versa? In other words, did any of these “healthy, asymptomic” people develop adrenal issues post-donation?

Something tells me the researchers never considered those things as possibilities.

 

 

Grossman, A., Koren, R., Tirosh, A., Michowiz, R., Shohat, Z., Rahamimov, R., Mor, E., Shimon, I., & Robenshtok, E. (2015). Prevalence and clinical characteristics of adrenal incidentalomas in potential kidney donors Endocrine Research, 41 (2), 98-102 DOI: 10.3109/07435800.2015.1076455

Categories
Follow-Up Liver Donor Living Donor Protections Living Donor Research Living Kidney Donor Psychosocial Risks

Living Donor Psychosocial Evaluations Are Inadequate

Seven European researchers, on behalf of the ELPAT Paychological Care for Living Donors and Recipients Working Group “performed a systematic literature review of guidelines, consensus statements, and protocols on the content and process of psychosocial screening of living kidney and liver donor candidatesThirty-four publications were identified, including seven guidelines, six consensus statements, and 21 protocols or programs.”

“Across 34 publications, 197 different psychosocial factors were identified that can be clustered into 42 psychosocial domains”. According to the researchers, this “broad spectrum” suggests that the transplant industry has no clear definition of what factors need to be identified and/or addressed.There was also a lot of discrepancy in terminology (e.g., psychological well-being, psychosocial stability, psychopathology) “and in the level of detail provided in defining each criterion: some authors only addressed broad “umbrella” terms, like psychiatric disorders, whereas others specified these (e.g., mood disorders (depression, anxiety), personality disorder (schizophrenia, borderline)). Moreover, some authors just listed factors without any clarification, whereas others provided detailed descriptions, together with examples from clinical practice. For example, Leo et al. explained why employment status is important, as employers are a principal source of economic support by providing sick leave or vacation time during postsurgical recovery.”

Here are some of the factors covered, from most common to least (From Table 4 in the paper):

  • Motivation-related factors: 73.5%
  • Coercion or Pressure to donate: 67.6%
  • Support before and after donation; 64.7%
  • Donor-recipient relationship: 58.8%
  • Current of Past psychiatric disorders: 50%
  • Competence: 47.1%
  • Financial Issues: 47.1%
  • Coping-related issues: 44.1%
  • Employment-related issues: 44.1%
  • Family-related issues: 41.2%
  • Ambivalence: 38.2%
  • Unrealistic Expectations: 32.4%
  • Cognitive Status: 29.4%
  • Health Behavior (eg. obesity, smoking, exercise): 23.5%
  • Potential Medical Risks and urgency of donation:: 8.8%
  • Health concerns during and after donation: 5.9%

“Most factors were not supported by evidence or were at least not referenced, making it unclear if they indeed predict poor outcomes in donor candidates.”

In layperson’s terms, this means no proof exists that any of the factors the evaluation examines (eg. drug abuse, history of depression] is linked to poor living donor outcomes. What this really means is that the transplant industry hasn’t taken the time to study living donors and quantify exactly how they fare post-donation and which attributes contribute to their well-being.

“Contraindications for donation [aka red flags, or reasons folks shouldn’t donate] were specifically stipulated in 18 papers (52.9%),of which only three indicated whether these were absolute or relative contraindications [‘relative’ meaning: well, maybe they shouldn’t donate, whereas ‘absolute’ means: no, absolutely not], and only one paper indicated that these were evidence-based”

 

Their final conclusion:

“At present, there is no consensus, nor strong evidence or concrete guidance on what to screen for, how to handle identified psychosocial problems, and how to perform the screening, leading to huge variability in screening practices,the risk that important psychosocial factors might be overlooked or that unnecessarily time-consuming and costly procedures are being undertaken.”

Read the whole thing at the link

 

Duerinckx, N., Timmerman, L., Van Gogh, J., van Busschbach, J., Ismail, S., Massey, E., Dobbels, F., & , . (2014). Predonation psychosocial evaluation of living kidney and liver donor candidates: a systematic literature review Transplant International, 27 (1), 2-18 DOI: 10.1111/tri.12154

Categories
Follow-Up Living Donor Research Living Kidney Donor Psychosocial Risks

Living Kidney Donors Decrease in Qualify of Life Measures 10 years Later

ETA: I was able to get the entire article.

 

This is brand new so I can only get the abstract.

A prospective cohort of 100 living kidney donors at the University of Heidelberg were followed for a median of 10 years. [Note: median means mid-point, so half were more than ten and half less than ten. ETA: 2-11 years, per the study]

 

Clinical data was available for 97 donors and QOL [quality of life]  data for 74 donors.

Nine donors died during follow-up of unrelated causes to donation, and one donor was lost to follow-up.

I’m dubious of the claim “unrelated causes” without knowing the actual causes. For example, if a living kidney donor experiences depression, anxiety, etc post-donation and begins self-medicating with alcohol and dies in a alcohol-related accident, isn’t that related to the donation?

Or if a pre-existing mental illness or drug abuse problem goes undetected during evaluation and subsequently causes the person’s death?

Or an LKD that begins behaving in a self-destructive manner because of trauma-related issues?

My gut says that transplant professionals are quick to dismiss things/events/symptoms as “unrelated” because they don’t want to acknowledge the potential harm they’re doing to their living donors.

 

ETA: One donor died after two years of follow-up due to a car accident, one died after four years of
follow-up of metastasized colon cancer, two died after seven years of follow-up of which one due to
metastasized breast cancer and the other of metastasized lung cancer, one died after eight years of
follow-up due to a cerebral vascular incident, one died after nine years of follow-up due to recurrence
of breast cancer, two died after ten years of follow-up of which one to an aspergillus infection during
chemotherapy for acute myeloid leukemia and the other of a cutaneous malignancy, and one died
after 11 years of follow-up due to a ruptured aneurysm of the descending aorta

Jiminey, that’s a lot of cancer.

 

(emphasis mine below)

QOL showed significant clinically relevant decrease of ten-year follow-up scores in SF-36 dimensions of physical function (p<0.001), bodily pain (p=0.001), and general health (p<0.001).

Here’s an explanation of the SF-36.

 

MFI-20 [Multidimensional Fatigue Inventory] scores were significantly higher for general fatigue (p<0.001), physical fatigue (p<0.001), reduced activity (p=0.019), and reduced motivation (p=0.030).

ETA: On average donors did not return to baseline during ten-year follow-up for any dimension of the MFI-
20:

On one hand, this is more confirmation of what many living kidney donors have been experiencing. On the other, it’s a far less rosy picture than the transplant industry would lead the public to believe. What’s even more troubling is that even in the face of these results, the Dutch researchers still conclude “Donor outcomes are excellent ten years post-nephrectomy”.

Exactly how much do we have to be maimed before they stop ignoring us?

 

ETA: I was able to obtain the full article.

 

A big red flag regarding the researchers’ attitudes toward living kidney donors is evident three sentences into the Introduction when they say “While the donor is not the patient, he or she is willingly exposed to harm of the surgical procedure to improve the well-being of another individual.”

Newslfash: Living donors ARE patients. We put ourselves in the care of a medical team (who gets paid!) and we undergo a major surgical procedure to remove an important organ. That, by definition, MAKES US PATIENTS!

 

The LKDs experienced a median 14% loss in eGFR.

18.9% had eGFR between 30-60. More interestingly, the baseline GFR of the 18.8% was significantly lower than those with eGFR >60, a median of 60 and 94 ml/min respectively. I interpreted “baseline” to mean “pre-donation” but it is possible they accepted someone with a GFR of 60 as a living kidney donor?? That seems dangerously low. Granted, kidney function does decline with age,so it’s possible many of these donors were significantly older than the U.S. average of 41?

 

After ten years 35 donors (38%) have lost over 6-34% of their creatinine levels as compared to their
one year follow up. Within this group, creatinine at follow-up was significantly lower when compared to
donors who lost less than the expected five percent of their creatinine, a median of 98.5 and 112.5
ml/min respectively

More on creatinine clearance and relation to kidney function.

 

25.6% developed high blood pressure after ten yearsThese donors had a median eGFR at follow-up of 68.7 ml/min, the median eGFR in the group of donors without hypertension was 79.9 ml/min

 

The researchers continue to categorize these results as “excellent” because they’re comparing kidney donors with the general population. As I’ve discussed many, many times before (and so have many research articles), this is an inappropriate comparison. Living kidney donors are screened for various physical and mental health issues, therefore they skew “healthy” in relation to the general population. If we are suddenly the “general population” post-donation, then our health is being downgraded by the process of donating, and that’s unacceptable. If we’re not, if we’re still considered “healthy”, then we cannot be compared to those who would never be accepted as a donor.

 

Klop, K., Janki, S., Dooper, P., Weimar, W., Ijzermans, J., & Kok, N. (2015). More than a decade after live donor nephrectomy – a prospective cohort study Transplant International DOI: 10.1111/tri.12589

Categories
Ethical Considerations Follow-Up Informed Consent Living Donor Research Living Donor Risks Living Kidney Donor Psychosocial Risks

Living Kidney Donors Lose Vitality

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