Living Donor Research Living Donor Risks Living Kidney Donor Psychosocial Risks

Fatigue, Decreased Quality of Life in Living Kidney Donors

This one is from 2012. 74% of living kidney donors who donated between 1997 and 2009 at the Leiden University Medical Center filled out the questionnaires, including the Short-Form 36 (yep, that one again; popular with the researchers);the Multidimensional Fatigue Inventory; and the Utrecht Scale for Evaluation of Rehabilitation-Participation (regarding societal participation).


The following is important, in regards to analyzing the results (emphasis mine):


The component summary scores are standardized to the general Dutch population, using the Dutch regression coefficients, so that a score of 50 is the reference value (the expected HRQoL) for the Dutch population of that age and gender. A reduced HRQoL was defined as a PCS or MCS lower than 45, because a 5-point difference is regarded as clinically relevant and which is 10% lower than the average expected HRQoL in the general population (standardised for age and gender). Given that the average HRQoL in living kidney donors is known to be higher on average than the general population, a cut-off of 45 means that these donors do not only have a 10% lower score than the general population, but can be considered very low compared to the average HRQoL scores among other donors.


Fatigue was measured with the Multidimensional Fatigue Inventory (MFI-20) [21], which covers the following dimensions of fatigue: (i) general fati- gue; (ii) physical fatigue; (iii) mental fatigue; (iv) reduced motivation and (v) reduced activity. In each of the five subscales, scores range from 4 to 20, with higher scores indicating greater fatigue.

And finally:

the Utrecht Scale for Evaluation of Rehabilitation- Participation (USER-Participation) [22]. The USER-Participation covers three aspects of societal participation: frequency of participation, restriction in participation and satisfaction with participation. In each of the three sub-scales, scores range from 0 to 100, with higher scores indicating higher frequency of participation, fewer restrictions in participation and more satisfaction with participation.



Of all donors 35% were male. The mean age at donation was 51.7 years and the mean time since donation was 5 years (range 0.9–13.5 years). Most of the donors had donated a kidney to a first degree relative (child, father/mother) or to a second degree relative (brother, sister).

Note: in the U.S. the average age at donation is 40/41. More women than men, but not this lop-sided, and yes, most donate to a first-degree relative (and overwhelming majority donate to someone they are emotionally related to).


Results (all emphasis mine again):

A reduced PCS was associated with a higher BMI and smoking prior to donation.

18% of LKDs had a reduced Mental Component Summary. “They did not differ in BMI, blood pressure, kidney function, percentage of cardiovascular events compared to donors without reduced MCS, but on average had higher expectations regarding interpersonal benefits, health consequences and quid pro quo prior to donation.”

“No difference was found between donors of whom the recipient had graft failure (immediate or later), graft loss or died, with the other donors in the expectations they reported to have had prior to donation. This suggests that donors who reported more negative expectations are not just donors with worse outcomes in the recipient.

Donors with reduced PCS (physical component summary) and MCS subscales reported significantly higher fatigue on all dimensions of the MFI-20 (multidimensional fatigue inventory) and lower societal participation both in terms of frequency and satisfaction, as well as more restrictions.”

“…donors with reduced PCS/MCS clearly have higher fatigue scores indicating more fatigue than the general population, particularly for general and physical fatigue”


About that fatigue:

“Donors with reduced MCS had a lower blood hemoglobin level post donation.”

Hemoglobin carries oxygen from the lungs via red blood cells throughout the body. Low hemoglobin is commonly known as anemia. Some of the symptoms of anemia include fatigue, paleness, and shortness of breath. Anemia forces the heart to work harder to distribute oxygen, which can cause an erratic heart rate or other heart problems down the road. Having only one kidney also puts a strain on the heart, so anemia would be sort a double-whammy.


This is the fourth study I’ve run across recently (three of them published quite recently) finding that a significant chunk of living kidney donors experience a reduced quality of life post-donation. So when will the transplant industry begin to care for us?

de Groot, I., Stiggelbout, A., van der Boog, P., Baranski, A., Marang-van de Mheen, P., & , . (2012). Reduced quality of life in living kidney donors: association with fatigue, societal participation and pre-donation variables Transplant International, 25 (9), 967-975 DOI: 10.1111/j.1432-2277.2012.01524.x

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-

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