"Transplantation—like life itself—has a way of finding our vulnerabilities and testing them," transplant psychologist David Edwin, Ph.D., says. He notes that most psychologists usually see troubled people who can’t cope with normal circumstances. "But in working with transplant patients, I usually see normal people who are demoralized by abnormal circumstances." |
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His observation is that individual personality traits, strengths, and vulnerabilities make a difference in how patients cope with the unusual situation they find themselves in. But those personal psychological vulnerabilities do not need to be pathological, he says.
Patients before and after transplant may go through difficult periods in following complex regimens and dealing with sometimes debilitating physical problems. And, they worry about a multitude of life’s issues. For some, on account of physical deterioration before transplant, the disease process can affect behavior and mental outlook.
He points out that poisons from kidney and liver disease could affect the mind and one’s emotional state. There are "stigmata" or other physical signs of illness that affect one’s appearance. There is boredom, tension, and conflict. Worry over the risk of treatment. Sometimes there is a loss of livelihood, social status, or one’s role in the family. Other illnesses can occur, including depression.
"A patient’s depression or negativism is not always a choice; it cannot be turned on and off," he notes. "But you can’t leave it unchallenged, either." He adds, "Patients’ families need to forcefully encourage them at every opportunity."
"Chronic illness affects finances and relationships, it causes physical changes that affect what patients can do for themselves and others. Self-esteem is affected. Illness becomes an unwelcome way of life. Patients wonder what their experience means."
He points out, "It is particularly difficult to be sick in this society. In our culture we expect to be healthy, we do not expect to be sick and disabled. Good health is seen as virtuous and is rewarded. Society tells us that if you get sick you are supposed to get better right away; people get impatient with the patient. It is difficult to perform one’s roles of spouse, parent, and employee, while dealing with a chronic illness."
Following transplant, there are additional concerns. There is a long road back. Organ rejection is always a worry. Patients wonder: Now what? What have I gotten myself into or out of? He notes, "Patients have traded one life for another—clinic visits and daily reminders that they are unusual, that life is not normal."
"Transplant," he says, "is not the easiest path in life. There are rewards as well as difficulties. Everyone’s goal is to go back to doing the things that life is all about. Patients seek hope and affirmation of their lives."
"It IS difficult to keep on keeping on when you are in this situation," he says. If patients or their caregivers, before or after surgery, feel as if coping is getting more difficult, they should ask for help, he advises.
Although it can be difficult to communicate with someone who feels down, caregivers can be firm in suggesting additional support and help. Dr. Edwin suggests that caregivers recall Winston Churchill’s admonition, to never, never, never, surrender. "Be patient and persistent—there is always reason for optimism in depression. Caregivers should communicate understanding and faith and be firm about the need for treatment."
Depression, he says, is a lasting change in mood, a change in body functions, a change in a sense of self. Other signs are if a patient is avoiding care and if the quality of life is a concern."Negativism is a symptom, not a choice, and you cannot argue it away."
Calling for help is important when a caregiver suspects depression, hears the patient giving up, sees self-endangering behavior, including substance abuse, non-adherence to the medical regimen, and notices avoidance and withdrawal. Talking to the patient about these behaviors should be the first step in dealing with depression.
"The vast majority of patients do well after psychological intervention. We can almost always make people better," he notes. "Depression is what we treat best. Still, the stress of living before and after a transplant can lead to additional emotional issues."
Not all treatment for depression is medical, he notes. The transplant center integrates psychology and social work into the entire transplant process. Social workers are always on hand to help families cope with the emotional strain and practicalities, like transportation. And volunteer mentors—patients who had transplants—extend the social worker’s role. Dr. Edwin can step in when depressed feelings escalate. He refers patients to a psychiatrist if he thinks medication is necessary.
"There is hope," Dr. Edwin concludes. "I have been honored to work with patients in some of their most physically and emotionally vulnerable situations. I have seen patients and their families cope with exceptionally complicated and difficult times with astonishing grace and dignity."
