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Depression in Living Donors
Post-surgical depression occurs for a number of living donors, regardless of whether the recipient assumed an improved quality of life or not. True numbers are under-reported because: 1. Transplant centers do not follow-up or provide aftercare for their living donors, instead referring them to their primary care physician, so there is no record. 2. Very few research studies have been done on the psychological and emotional effects of living donation, specifically the potentially negative consequences. 3. The studies conducted are rife with small sample sizes and high rates of non-compliance, meaning that targeted subjects do not respond to requests for more information. 4. The studies conducted are generally retrospective, meaning they are done a significant time after donation, and self-reports of complications and difficulties are 'remembered' less severely than at the time of the experience. 5. The follow-up forms required by UNOS/OPTN does not collect data on psychological or emotional ramifications.
This lack of data reflects a lack of priority on the part of the transplant community. In fact, under 'Psychological Concerns', Transplant Living (a website run by UNOS, who also manages OPTN) notes the 'concern' of 'depression and anxiety' and admits that a negative outcome of the transplant process 'can be devastating' for living donors. However, they offer no links, contact information, suggestions or support for such occurrences.
What is Depression? According to the DSM IV, symptoms include:
- feelings of sadness or emptiness *It is not uncommon in the first 6-8 weeks after donation to experience low energy, fatigue, lethargy and large amounts of sleep due to the body's attempts to heal and adjust to its new physiology (one-kidney, missing lobe of liver, etc). Other symptoms include:
- over eating or loss of appetite
While everyone experiences a day or two of
sadness and lethargy, the aspects of depression are longer-lasting
and significantly impair an person's ability to function.
Depression often co-exists with other illnesses: anxiety
disorders, social phobia, general anxiety disorder, and especially
PTSD (post-traumatic stress disorder). In a National Institute of
Mental Health (NIHM) funded study, 40% of people with PTSD also
suffered from depression at one-month and four-month intervals after
the traumatic event. (68)
More at
WebMd
What Causes Depression in Living Donors?
There are many reasons, known, speculated and unknown. Here are a
few:
1. Grief over the loss of the organ or the loss of the 'whole' self.
In the same way a woman grieves after a mastectomy or hysterectomy,
or a man grieves after losing a testicle, or a person grieves after
losing a limb or other body part, some living donors grief the loss
of their pre-donation body and health.
2. For some living donors, the surgery and recovery are more painful
and debilitating than expected.(92) This can cause extended time off
work, inability to function normally, and/or cause unanticipated
financial stress.
3. A sense of being abandoned - by the transplant center, friends,
family, and/or the recipient and recipient's loved ones - can
contribute to depression.(92) (See
Psych Recovery for more)
4. In some cases, the graft (transplanted organ) fails, the
recipient doesn't improve, or worse, the recipient dies. Feelings of
failure, grief, sadness, anger, and betrayal are a very common
result.
In one study, living donors had an adequate quality of life
perception but had a slight tendency toward depression.(32)
How Common Is Depression In Living Donors? "There is a
serious psychological component
to...transplantation," said Timothy
Pruett, MD, of the University of
Virginia Health System, Charlottesville,
"Many people are unhappy about their
donations and are depressed," Dr.
Pruett has reported that at his center
there has been 1 suicide from an
overdose of pain medication. (66)
A study of 391 living liver
donors presented at the 2006 World Transplant Congress found that
16 donors developed psychological problems
that required treatment and one donor committed suicide
more than a year after the procedure.
- Of 41 living related kidney donors over an 11 year period, 25%
reported experiencing depression afterward (94).
- The emotional reaction to surgery included a
period of depression for 7% of
donors.(4)
- One-year post-donation, 10.58% of living
donors were prescribed and taking antidepressants. (28)
- In another study that used the Beck
Depression Inventory, scores were significantly
worse three months after nephrectomy (15).
- Shortly after their surgery, 31% felt
depressed and 19% felt more like crying (2).
- In 25% of 161 donors, screening with the Hospital Anxiety and
Depression Scale revealed anxious and/or depressive symptoms above
the clinical cutoff score. (89)
- Anti-depressants were prescribed to 9.3% of 86 donors because
of severe depression. (91)
- 50% in one study had sufficiently high scores on an anxiety and
depression inventory, or symptoms judged sufficiently worrying, to
be referred to a psychiatrist. Of these ten, two were considered to
be possible suicidal risks, and one reported attempting suicide with
sleeping pills obtained from a local doctor. (104)
Of those donors whose recipients' grafts
have failed, 43% believed their role as donor made the failure more
devastating and 11% had experienced suicidal ideation. A majority of
donors (84%) favored the transplant team offering mental health
referrals to donors.(4)
In one study, two of four donors whose
recipients died considered counseling and one followed through with
it.(6)
Six percent of donors experienced an
increase in pre-existing depression or anxiety (31). One donor
reported feeling downhearted all of the time (5).
Perspectives, Conversations
and threads regarding sadness, anger, depression, and
disillusionment post-donation:
Mother to Daughter kidney donation.
Anonymous donor's story of post-surgical
depression and what she learned about her motives for
donating.
Treatments
Here are some
steps to take before obtaining a
prescription for anti-depressant medication:
- Eat healthy foods.
- Get enough rest.
- Express thoughts and feelings to friends, in a journal or some
other artistic pursuit.
- Exercise. Something as simple as taking a walk reduces stress and
releases endorphins.
- As difficult as it may be, try to be with other people. Isolation
breeds sadness and loneliness.
- Participate in activities: attend a movie, baseball game or
otherwise.
- Break large tasks into smaller, more manageable parts.
- Take it easy on yourself; too much responsibility or high
expectations will only create a self-fulfilling prophecy of failure.
- Recognize the negative thinking is part of the depression.
Interrupt and correct the destructive 'self-talk'.
-Ask for help if thinking turns suicidal.
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