Five years ago, Frank (name changed for anonymity) was put on an organ donation waitlist, which can take from 5 to 10 years. He and his wife focus on the present rather than on the future, he mentions how there is always a chance the organ will be rejected by the body: “Once you get a kidney your life will change completely.”
Waiting for a transplant can be a heavy emotional and psychological burden. Many struggle with the thought of receiving an organ and become increasingly stressed the longer they sit on a waitlist. There is a set of criteria that must be met prior to being put on the waitlist, and another to receive an organ. The lengthy process can cause a lot of anxiety and despair about the future.
How do people cope? A transplant psychologist and clinical associate professor of surgery at the University of Iowa, uses Acceptance and Commitment Therapy with her organ transplant patients. She encourages them to embrace their emotions by helping them accept their feelings with compassion. Jones explains that many are grieving the health they once had and are fighting to stay alive on a daily basis. Through this type of therapy, grief and feelings that arise during this time are channeled into behaviors that are healthy and motivating for the patient.
While coping, creating an environment that is open for patients to express their feelings can be a step in the right direction. For some, close relatives or friends can step in to provide emotional and physical support. The task of caring for someone with organ failure can be emotionally draining and life changing. Frank’s wife, Lisa (name changed for anonymity), explains how she once loved to travel with him. Since starting dialysis, travelling has become very difficult as treatment must continue wherever they go. And there is limited help in trying to find dialysis facilities in other countries, so they just don’t travel anymore.
Feelings of sadness, hopelessness, stress, and despair among family members are also common. Many are reluctant to express their feelings, as they are not the one suffering with the illness. Jones encourages family members to prioritize their own mental health and recommends taking time for self-care. This can be done through joining support groups within the community or by receiving counselling to help cope with feelings.
For some, organ transplants can be felt as a time for second chances, and a time of healing, both mentally and physically. Jones suggests organ recipients contact their donor’s families and express gratitude. This exchange can be a source of healing for both. And for those who lost a loved one, communicating with or meeting the recipient of their loved one’s organ can bring some measure of comfort and relief. Jones says: “I can assure you that all families think of their loved ones all the time. But by your very existence, you perpetuate the life of their loved one, and that’s your gift back to them.”
-Abigail Ramos, Contributing Writer