For some living donors, the psychological and emotional aspects of recovery are much more difficult and lengthier than the physical recuperation. While the media and transplant industry have minimized its importance, the phenomena are very real.
- Acute Stress Disorder/Reaction (see PTSD page)
- Post-Traumatic Stress Disorder (PTSD)
Living Donors are incredibly generous people. They literally put another person’s needs before their own in making the decision to donate. Consequently, it can be very difficult for the living donor to admit to or talk about their struggles, to make themselves a priority. This can be worsened by family and friends who minimize the donor’s experience as unimportant compared to the recipient’s health and recovery.
Living Donors have the right to respect and consideration, to be cared for and have their needs met.
IMPORTANT: If you are unable to or comfortable contacting your transplant center, please do not hesitate to locate a mental health practitioner or facility if you are experiencing any of these symptoms. You are not alone.
According to studies, the psychological status and distress scores of ONE-THIRD of living donors worsened 1 and 3 months after surgery, with cases of depression, anxiety, sensitivity, paranoia, aggression, intractability and obsession noted (24).
Some living donors reported that they did not feel any better about themselves after donation, and others felt unappreciated. (1,6)
6% and 8% felt ignored (4,5), and feelings of abandonment were noted (7)
6% and 24% felt that they had given up something for nothing in return.(2,3)
4% were disappointed with the emotional experience of donation.(4)
2% percent of living donors reported disappointment related to the surgery (5)
9% percent of laparoscopic donors felt sadness and loss (8)
“Before the surgery, most of the focus is on the living donor. He or she receives a lot of attention is treated very well. After the surgery, however, the focus changes to the kidney recipient…The shift in attention may be hard for the donor…causing a feeling of abandonment”
The pamphlet was published by Roche, a pharmaceutical company that manufacturers anti-rejection medications.
It’s well documented that transplant centers (and OPTN) lose track of more than 1/3 of their living donors within a year post-donation (61, 95). In addition, many living donors have reported that their attempts to contact their transplant centers have resulted in a recommendation to see their primary care physician.
In one living donor’s words:
“The last time I spoke with my Coordinator was when I called to tell her that my sister’s transplant had failed – only one week later. She offered me a bunch of meaningless platitudes, told me she’d find out what was going on, and I never heard from her again”.
An additional concern for donors was that they appeared to be perceived as essentially healthy and well and thus tended to receive very little medical attention. As Martha said: ‘‘It’s as if once you have given the kidney you are shut away in a corner. You are just discarded.’’(92)
Living donors aren’t imagining their abandonment, nor are they behaving like spoiled children. They ARE being abandoned, and they have every right to be angry about it.
It’s important to address the impact of ‘adverse recipient outcome’. In other words, how does the living donor fare when their intended recipient does not regain their health, the transplant fails, or ultimately, the recipient dies?
In short, not well. While we all know, logically, that rejection does occur, unexplainable things happen, and that transplants are not miracles, we’ve still internalized the belief that the ‘gift’ will heal the recipient. If it doesn’t, a donor may experience survivor guilt, blame themselves, have profound feelings of failure, anger, isolation, disappointment and grief (just to name a few).
Adverse recipient outcomes may have lead to depression, feelings of waste or guilt and conflict in the donor-recipient relationship (5).
- 13% felt the procedure had been a waste (5)
- 5% felt guilty (4)
- Of those whose recipient died, only 50% felt that their experience had been worth it (6)
- 11% experienced suicidal ideation (4).
Of those donors whose recipients’ grafts have failed, 43% believed their role as donor made the failure more devastating.(4)
When assessed for hostility, donor scores at one and six months after donation were higher than pre-donation and control group scores (9).
Pearl Howie, a living kidney donor, writes: When they removed the kidney it was weird, to think that a part of me was dead, and there were moments when I felt like it had all been in vain.(147)
A sense of guilt in not having provided a good enough kidney was expressed… Another suffered from sorrow and mental depression for several months afterwards…Some…did not wish to have a continuing contact with the transplant staff, but the majority did. However, the establishment of contact depended on an initiative from the donor and none of them took this step. The lack of an active approach by a doctor or a nurse was a major complaint expressed by most donors (241)
84% of living donors favored the transplant team offering mental health referrals to donors.(4)
Sixteen of 20 living donors whose recipients’ outcomes was failure or death reported that the transplant medical team should offer mental health. (5)
It’s also been found that lack of support (25,15) may have contributed to distress, and early counseling may help alleviate psychosocial complications (4,5,17). The obvious question then, is – Why don’t more transplant centers offer psychological support or aftercare to their living donors, especially in unsuccessful cases?
Last Updated January 1, 2015