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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. Some transplant centers have been lax in providing aftercare for their living donors, instead referring them to their primary care physician (130). Also, many living donors do not return to their transplant center for treatment. Consequently, accurate records don't exist.
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 that have been 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 that have been 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 six-month, one-year and two-year follow-up forms required by OPTN do 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
- reduced interest in activities that used to be enjoyable
- sleep disturbances, including insomnia or excessive sleeping.*
- loss of energy or significant reduction in energy (aka fatigue)*
- difficulty concentrating or making decisions
- suicidal thoughts
*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
- irritability and restlessness
- loss of interest in sex
- feelings of pessimism or hopelessness
- persistent aches, pains, headaches, cramps, & digestive problems that do not ease, even with treatment.
- low self-esteem, negative self-image.
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)
23% of our donors admitted to feeling depressed after surgery and 15% admitted to feeling depressed or anxious during the 4 weeks before responding to the questionnaire.(10)
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, a man grieves after losing a testicle, or a person grieves after losing a limb or other body part, some living donors grieve the loss of their pre-donation body and health. (See Grief for more)
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)
One LKD reports: By Christmas my family had all but forgotten about the operation...but I ended up doing too much on Christmas Eve and my back started to hurt...So I went downstairs at about 2 in the morning, unable to sleep, upset and in pain, looking for paracetamol. I opened the kitchen drawer and saw a box of pain killers and in that moment I wanted to take them all – I just wanted it to be over.(147)
Note: She didn't take the pills. She got a good therapist instead.
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 (aside from medication and therapy)
- 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.