Living with a chronic illness affects us physically and emotionally. Transplantation involves more than just surgery. It means lifestyle changes and a new life focus. No one said it would be easy.
We asked three members of the patient support team to reflect on the subject of recognizing when one’s emotional and physical resources need rebalancing and outside assistance. We present views from a Hopkins transplant psychologist, social worker, and a trained patient mentor.
Transplantation Has a Way of Finding our Emotional
Vulnerabilities
We are all human, and we all have physical and psychological vulnerabilities in our makeup. Transplantation—like life itself—has a way of finding those vulnerabilities and testing them. We can be tested beyond our endurance by physical, financial, and vocational challenges that never seem to end. We become discouraged, frustrated, and angry. We find ourselves striking out at the people we love most and sometimes we may feel like giving up.
These are the times when we most need the help of others. We need the support of our families, our friends, our churches. Some situations call for the help of our doctors or other professionals. In general, when we become confused or hopeless, when we feel that all of our personal resources have been exhausted or have failed us, or when we feel trapped and helpless to cope with the accumulating circumstances—these are the times when professionals can help us regain our balance, our sense of proportion, and our ability to manage things for ourselves.
Depression can be an understandable emotional reaction to overwhelming stress, or it can represent a physiologic response that becomes overwhelming and self-sustaining. The latter kind of depression typically brings with it three kinds of symptoms: change in our emotions (sadness, irritability, agitation, inability to experience pleasure), in our thinking (slowness, inattentiveness, forgetfulness, negativity), and in our physical functioning (energy, appetite, sleep, sex). Advice and support can help with this kind of depression, and often it will get better spontaneously if we wait long enough, but medication can restore normality much more quickly and return us to our normal competence and effectiveness.
If you have any doubts about whether you or your loved ones have developed such a need for professional attention, please don’t wait to speak with someone on your transplant team about it. Life can be tough enough with symptoms, medications, and insurance problems, and there are times when we need to use all of our resources to keep on top of it.
--David Edwin, Ph.D., Associate Professor, Psychiatry and Behavioral Sciences
Some Warning Signs for Patient and Caregiver
Various healthy coping mechanisms can help us deal with the ups and downs of illness. Coping mechanisms are unique to each person, however. How we handle what is happening comes from our history—who we are.
There are times when our personal coping strengths and resiliency aren’t enough. No matter how independent and capable we are, we may need to seek professional help in order to cope with stress. Remember, it is “normal” to feel a variety of emotions, both positive and negative, as you go through the transplant process.
If you answer “yes” to any of the following questions, your feelings are interfering with your ability to manage your life: Are you arguing a lot with others? Do you blame yourself or others excessively? Are you withdrawing or staying away from people? Are you turning to drugs or alcohol on a regular basis? Are you experiencing unusual sexual difficulties? Don’t feel happy or don’t feel pleasure in things like you used to? Can’t sleep or sleep all the time? Do you feel really bad about yourself or feel like a failure most of the time? Do you feel stuck? Is it hard to concentrate or make decisions? Have you let work take over your life? Are your emotions affecting you physically? Do you put yourself in unsafe situations? Do you think about death or about taking your own life?
If these feelings and behaviors continue intensely for a period longer than a few months, it may be wise to consult clergy, a licensed therapist, a clinical social worker, psychologist, or psychiatrist.
To endure the ups and downs of chronic illness you must believe in yourself—believe that you have what it takes to adapt to life with transplant— believe in your ability to succeed! But no one can do this alone. It is a myth that a person can handle chronic illness and transplantation on one’s own. It is not OK to say, “I’m fine” when you are not! We all need people to help when we are feeling overwhelmed, sad or anxious as well as when we are happy, someone to share our joy and accomplishments. Get support! Reach out to organizations, family, friends, and professionals.
Mary Kaiser, M.S.W., L.C.S.W.-C, Social Work, Kidney and Pancreas Transplantation
Social Outlets Can Help Tame the Emotional Roller Coaster of Chronic Illness
Having been a mentor for several years, I have seen situations where the transplant candidate and the family become overwhelmed by the emotional roller coaster they experience.
For example, I first spoke with Jean and her only caregiver, her mother Paula, right after they learned that Jean (not their real names) needed a liver transplant. They were reeling from the shock, trying to separate fact from fiction. We talked about problems Jean was experiencing including her frightening bouts of encephalopathy (a condition causing mental confusion). We discussed the telltale signs and I reminded her about what the doctor had told her to do to counteract these events.
I learned a little about the family. For instance, that Jean was Paula’s only surviving child, as Jean’s brother had died two years before in a tragic accident. I knew that her mother was having her own medical problems. So I asked Jean if I could speak with Paula.
When Paula got on the phone I could hear the stress in her voice immediately. First we talked about her daughter. Then, I asked how she was doing. Her voice began to quiver and I knew she was unsuccessfully fighting back tears. She told me she was crying all the time. It was obvious she was overwhelmed. Her entire existence revolved around her daughter and work. She desperately needed a break.
I asked Paula what she liked to do for fun. She told me she liked to play the piano but didn’t have one. She also liked to go bowling and to play bingo. I told her it was time to get back into the swing of things. I also suggested that she call Linda Darrell, the liver transplant social worker at Hopkins.
Shortly after that conversation, I called the family again. Paula told me Jean’s social worker explained how to deal more reasonably with her fears and that some of her fears were groundless. She also is now volunteering at the local church to play piano for the youth group. Paula joined a bowling league and plays bingo. Jean is still waiting, but her mother is better able to cope, and knows she can reach out to her mentor for support, and Hopkins for professional help.
Pat Barget, Volunteer Liver Patient Mentor
