The onset of liver disease may be acute or insidious. That is, it may come on quickly, or gradually. The person may or may not have a diagnosis, much less know what will happen, therefore; the idea that they may be referred for a liver transplant is likely unknown. When the onset is acute, very little or no time may be spent in this stage with movement rapidly into organ failure. At first, performance problems are not usually seen unless individuals have a pre-existing, debilitating condition, independent of liver disease. However, with the experience of “illness,” individuals search for a reason for their symptoms and may become frustrated because they are unable to perform at prior level of competence. Because the symptoms of liver disease are not visible, others, including significant others, family members, friends, and co-workers, may perceive them as complainers or hypochondriacs.
- The impact of liver failure, and the pre-transplant waiting time on you and your relationships with your loved ones;
- Strategies to be pro-active and maintain emotional and physical strength such that you will experience less problems with the transplant recovery;
- Ways to maintain involvement in valued activities and roles; and
- Finding a comfortable fit between the previously sick you—and the newly transplanted you.
A couple of comments about the 7 stages of the liver transplantation process:
Everyone experiences these stages differently. Many people go back and forth. For example, you can be listed for a liver transplant and then be removed because your disease status change for the better. Some people experience fulminate liver failure, which means the liver fails quickly and they receive a transplant before they have time to prepare. I know a young woman who went into labor with twins, and woke up 1500 miles away in a strange hospital with a liver transplant–and no twins –they were back at her home hospital. The process of waiting for, receiving, and recovering from a liver transplant can completely disrupt your life! It is my hope the information here will help you to prepare and handle the challenges that you may face.
The details about each Stage are linked here:[/vc_column_text]
In this stage, the liver fails to remove toxins from the body and some of the following symptoms may occur:
- Increasing fatigue
- Forgetfulness and confusion
- Depression or anxiety
- Trouble sleeping
A diagnosis, if not already known, generally takes place during this stage and the person may struggle to understand medical information. Other people, close to the person with liver disease, start to become more aware that a serious illness exists. Transplantation, as a possibility, may now be mentioned. News of a possible transplant is overwhelming, and reactions of denial or fear are common.
The individual, although they may look the same, is unable to maintain the same levels of energy and concentration as before the liver started to fail. The demands of usual responsibilities start to exceed abilities as physical and cognitive abilities decline.
The person with liver failure, now must balance the role of a patient with performance of other roles and responsibilities. Loss of the sense of competence and the ICF frustration experienced in stage 1 increase.
In the best scenario, treatment leads to remission or cure, in the worst to death. If transplantation is seen as the best likely course of treatment the person moves to Stage 3.
My experience: I was working as the Director of Adjunctive Therapy at a psychiatric hospital in Oklahoma. The hospital conducted medical screenings as part of a wellness program. I was told I was very healthy and physically fit yet I should follow up with my family Dr. about my high liver enzymes.
After nearly two years of continuous testing and head scratching, I was diagnosed with non-A non B chronic active hepatitis, which over time became known as autoimmune hepatitis. Over the next 15 years I experienced repeated flare-ups and was treated with tapering doses of prednisone to reduce the inflammation in my liver. In my case, it was a treatment, not a cure.
Others start to fear the seriousness of the disease and ask why. There may be denial, fear and difficulty with acceptance. Denial may persist in others especially when the person does not look ill. Members of social groups may notice withdrawal and lack of social participation. There is a gap in patient participation and the expectations of others which can result in conflicts as the individual fails to meet obligations of established roles. Frustrations often increase with inability to engage in interests as evaluations, appointments, and procedures are now central to the individual’s allocation of time.
This can be a time of high levels of anxiety as the individual and supportive others are torn between hope that the serious step of transplantation is not needed, and hope that transplantation holds a solution to their deteriorating physical condition. An important event is attendance at pre-transplant educational sessions where the team presents transplantation as a serious undertaking. The obvious exception is fulminate liver failure where the person either has a short wait, or goes directly to Stage 5, the transplant.[/vc_column_text]
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 in some cases, 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. It is a time to plan and to accept offers of helps from friends and neighbours as the need may rise later.[/vc_column_text]
The actual surgical transplant is the most acutely stressful part of the process. As the family and supportive others wait for news about the surgery, the patient is unaware of the surgery, remembering little that is said or S/he says immediately after. Soon the patient becomes increasingly aware of the pain and confusion during the immediate post-surgical period. Fear and helplessness are mixed with hope. The individual is self-absorbed and influenced by high levels of anti-rejection medications which can cause altered mental states. As individuals stabilize medically, attention transitions to discharge, and the subsequent challenges of self-management at home. Ideally after 6-9 days of healing, stabilizing, and education the individual leaves the hospital. That said, it is not unusual for complications to extend the stay to weeks or months of unpredictable and uncertain outcome.
Transplant teams medically monitor recipients for the remainder of their lives. The first three months is when the highest risk of acute rejection and re-hospitalization occurs. Stage 5 generally continues through this three month period. Three months is the first post-surgical benchmark for survival, and more than 9 of 10 people make it past this point. The recipient needs to stay close by the transplant center during the initial weeks following surgery. Highly immunosuppressed, the recipient is under close physical and laboratory monitoring with frequent visits to the transplant clinic. Recipients follow specific precautions to assist with physical healing and avoid infections. The focus of the team is on the body’s physiological responses to the transplanted organ, with support and reassurance to recipients and their families. Patients are central and all activities revolve around them. Everything is new, frightening, and exciting as the possibility of health returns.
During Stage 5, time is needed for healing. The body will need to adapt to the foreign organ. During this time, the patient starts to feel healthy as the residual toxins left by the dysfunctional liver clear. The individual’s role of a transplant patient is central and there is a certain notoriety having received a transplant.[/vc_column_text]
Stage 6 begins when the risk of acute rejection and medical complications lessen. Healing and medical stabilization have taken place. The individual starts to conceptualize their role of a recipient, and considers leaving the patient role behind. Physical signs of liver disease have all but disappeared and the individual is starting to feel healthy.
Complication in Stage 6 include rejection, loss of graft, debilitation, and as always death. Any of these can delay recovery or result in return to an earlier stage (Figure 1). Individuals with uncomplicated recoveries stay in this stage for 6-18 months before moving to Stage 7. Due to failure to adapt to some of the physical/physiological, psychological/emotional, social, or occupational changes that occur over this process, some individuals may never move forward and truly integrate the identity of the transplant recipient. Instead, they retain the ‘patient’ identity, feeling vulnerable about the integrity of their health and dependent on the health care system. Failure to move on means excess demands on the health care system, the family and the physical and emotional health of the individual.
Alternatively, the individual continues to proceed towards resumption of previously valued roles. At first performance in these roles may be limited. Most individuals find they experience ever improving energy and feelings of wellness. Our research shows the Activities of Daily Living are mastered by 5 months post-discharge and transplant recipients are fully capable of independent living.
This is not to say recovery is easy, either for the family or the transplant recipient. Unfortunately, we have found situations where families remain overly protective and transplant recipients hold or are held back from venturing into previously enjoyed roles and activities. This is often associated with fear wanting the individual to stay healthy and not risk harming transplanted organ. It is important for both individual and their supportive others to allow resumption of valued and settings when the person is capable. Many individuals benefit from post-transplant support groups and continued involvement with others who have experienced transplantation.