“The process of losing capacity and becoming reliant on others is hard. Don’t ignore or deny your limitations, work with your loved ones, they can see your struggle.”
During stage 4, the challenge for the individual is to stay as healthy as possible. This is difficult as the individual loses muscle mass, becomes malnourished, fights against water retention due to ascites, and trips to the bathroom necessitated by encephalopathy medications. Diet and exercise are important as better physical health is associated with fewer problems and shorter post-surgical recovery. Individuals are encouraged to maintain a typical daily routine. S/he is told to remain in constant contact and close to the facility should an organ become available. Both mental and physical capacity is compromised and the person experiences feelings of being in ‘limbo’. The candidate and his/her health have taken center stage in the family situation. There is nothing normal about their lives.
This is a time of building stress. There is a feeling of loss of control, both by the candidate and others. Stress can exacerbate underlying disorders and preexisting interpersonal problems. Depression, adjustment disorder, and anxiety are commonly seen in individuals waiting for transplant . The individual is now seen by others as in the ‘sick’ role. The individual’s fear of loss of competence and helplessness is now reinforced as others start to respond to them as unable to meet basic role demands. The ability to perform basic daily activities may be compromised due to increasing fatigue, health related quality of life and encephalopathy. Literature about this period addresses interpersonal strain and decreased role performance in basic activities of daily living.
It is during this waiting time that the individual and supportive others start to reformulate their image of health and wellness. Information about the outcome of the transplant and contact with others who have had transplants influence beliefs about what their life will be post-transplant.by