| 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.
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 exacerbated 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 contact your transplant center or feel uncomfortable doing so, 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). 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)
A few researchers (and many medical professionals) have attempted to attribute these feelings to the transfer of attention from the living donor pre-donation to the recipient post-surgery, but is the phenomenon that simple? It's well documented that transplant centers (and UNOS/OPTN) lose track of the majority of 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".
And...
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: Its 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 and life will go on as before. 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).
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).
84% of living donors favored the transplant team offering mental health referrals to donors.(4) Note: Ten years later, The Cleveland Clinic are still not offering mental health referrals to living donors 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 morbidity (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?
Perspectives, Conversations and threads regarding sadness, anger, depression, and disillusionment post-donation: LODAP (Living Organ Donor Advocate Program) page on living donor depression, grief and adverse recipient outcomes. Mother to Daughter kidney donation. Anonymous donor's story of post-surgical depression and what she learned about her motives for donating.
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