Living Donor Anxiety

Some anxiety and stress during the living donor evaluation and surgical process is normal and to be expected. In addition to the following, worries can include the possibility of being excluded (or approved) as a living organ donor, loved ones’ reactions to the decision to donate, the long-term risks of losing a significant part of one’s liver, or living with one kidney (including possible kidney failure and other physiological changes), financial constraints, and lifestyle limitations.

According to one study, 39% of living organ donors claimed the “overall experience was at least somewhat stressful” Furthermore, 8% were concerned about medical costs and 14% were worried about loss of income (10).

In other studies, more than a third of living donors reported feeling anxious about their own health, work, health insurance and recipient health after donation (23).

Across other studies, 50% of living kidney donors worried about the complications of nephrectomy (21)

Some living donors are unprepared for the reality of the actual surgery and physical recovery, especially if they’ve never been admitted to the hospital or experienced major surgery.

6-22% found the surgery and recovery stressful (7,13,14,15) and several found it unsettling (16). 

The physical postoperative state was stressful for 34% and 49% of living donors (4,5) and 53% experienced at least some physical distress at work (17).

When kidney donors who underwent laparoscopic nephrectomy were compared to those who underwent open nephrectomy, stress scores were not significantly different (11). 

It is not uncommon for prospective living donors to blind themselves to the possible negative repercussions of their choice in the weeks/months leading up to the surgery. According to Fellner’s landmark study: 

It appeared that not one of the living kidney donors weighed alternatives and decided rationally. 2/3 of the living donors stated that they made their decision immediately…, and “that once the decision had been made by the prospective kidney donor, he carefully refrained from considering further data and engaged in several maneuvers which permitted him never to vary in his decision or even to question it.” (82)

Consequently, for a number of living donors, ‘reality sets in’ during the recovery period.

Very Important: This is not to say the living donor is to blame for her/his lack of preparedness. Transplant centers are often not completely candid about the long-term risks of living donation, or about the lack of comprehensive data on living donors’ long-term health and well-being. The decision-making process of becoming a living donor is a very emotional one, and everyone’s first priority is helping the sick recipient. This is why a truly Independent Living Donor Advocate is paramount.  

Living Donors were more anxious about death 1 and 6 months after donation (9).

Having one kidney caused worry for 3 to 36% (4,5,15,18,19,8) and 31% of living kidney donors in two studies worried about their remaining kidney failing (20,21).

Across studies, living kidney donors worried about an insult to their own health (14% and 36%) (2,3), future kidney problems (6%) (22) and their future health in general (14%) (10).

Eight percent of laparoscopic kidney donors worried about needing a kidney transplant in the future (8).

15% of living kidney donors believed that donation impacted their health negatively, 34% worried at least once in a while about having only 1 kidney and 2% worried fairly often.(4)

 Symptoms of Anxiety

Emotional/Mood Symptoms

  • Anger or lack of patience
  • Dramatic mood swings
  • Emotionally blunted, flat or numb
  • A feeling of being under pressure constantly
  • Constant underlying feeling of anxiety or fear
  • Being ‘on the edge’
  • Depersonalization or detachment from people or events
  • Short-term memory impairment
  • Difficulty concentrating

Physical Symptoms

  • Difficulty sleeping or insomnia
  • Bizarre dreams
  • Waking in a panic
  • Nausea
  • Craving sugar, sweets
  • Lack of appetite
  • Lightheadedness
  • Frequent headaches
  • Shortness of breath
  • Chest pain
  • Tightness around the rib cage
  • Neck, back and/or shoulder pain
  • Racing heart
  • Chronic fatigue

Click here for a more expansive list.

Acute Stress Disorder: Occurs within 4 weeks of traumatic event, and lasts for a minimum 2 days to maximum 4 weeks.

Anxiety and stress-related symptoms can be linked to depression. According to the Anxiety Disorders Association of America (AADA), nearly one-half of people diagnosed with depression are also diagnosed with an anxiety disorder.   

Treatments for Anxiety

  • Relaxation techniques such as meditation and breathing exercises
  • Journaling or cathartic writing
  • Exercise is very effective in reducing the symptoms of depression and anxiety.
  • Be aware of and interrupt negative self-talk or circular thinking.
  • Cognitive-Behavioral Therapy (CBT) has been found to be particularly effective as part of a therapeutic relationship.
  • Medications

Anxiety can also be a symptom of Post-Traumatic Stress Disorder. PTSD is not relegated to veterans, but affects anyone who has experienced a life-changing and traumatic event.