STRESS OF LIVER TRANSPLANT

Coping with the Stress of Transplant
Caring for a patient with liver illness can be overwhelming and seem unmanageable at times. You may have experienced a range of emotions when your relative was first diagnosed with a serious illness. Now that a possible liver transplant is recomended, this information may likely create additional concerns and anxiety.
The waiting period for the donor liver, whether it is a few weeks or several months, can seem extremely wearisome and can create a sense of fear. If you’ve been on the waiting list for only a few weeks, you may think you didn't have enough time to prepare. On the other hand, if you have waited for several months, your concerns and anxiety may increase as the illness progresses. Often, worrying can stem from a lack of knowledge or not knowing what to anticipate. You are not alone. These feelings and concerns are appropriate for what you are experiencing.
There are things you can do to help redirect your worrying into something productive. You can refocus some of your anxiety and strengthen your ability to cope with the following tips:
Get to know your team. The interdisciplinary liver transplant team usually consists of the Gastroenterologist, Surgeon, Nurse Coordinator and Social Worker. You may also interact with a Dietitian, Psychologist, Chaplain, Physical Therapist, Pharmacist, and Nursing Staff. Talk with the members of your liver transplant team and identify each of their roles. Each person on the team has distinctive knowledge and information, which will be helpful throughout the transplant process.
Get to know your transplant center. Request a tour of the medical facility to help address questions you or your child may have in preparing for future hospitalizations. What do the rooms and intensive care units look like? Where will my relative have his/her exams? Where can I get something to eat? Where can family members sleep? Where can we take a shower? Find out about resources available at the hospital and the neighboring area. It is often helpful to contact the Liver Transplant Social Worker prior to your initial admission to the hospital/transplant center or evaluation process to help you identify these resources.
Educate yourself about your relation’s illness. Learn about the functions of the liver. What caused your relative’s liver failure (if known)? What are the symptoms to look out for? What are the medical or surgical options to help your child as his/her condition progresses?
Learn about the transplantation procedures. What are the pre- and post-transplantation procedures? What kinds of tests will be involved? How does my relative get on the waiting list? How long is the wait? What is a MELD score? How will we be contacted? How long will the hospitalization be? How often will we go to clinic? How many medications will my relative be taking? Who do we contact in case of an emergency? Your transplant team will welcome your questions and are there as a resource to you.
Get organized. Develop a "care notebook" as a reference/resource guide. If possible, request information in writing. Have a list of all the contact people at your transplant center in one place or sort all your business cards in a sleeve. Take notes and write down questions for the team. There is a great deal of information and much to learn. It can be easy to get overwhelmed. It is simple to overlook or fail to remember some of the details. Keep a calendar of appointments, lab schedules, and dates when procedures were performed. Keep copies of all medical consents for test/procedures.
Get support. Emotional support is vital during this time. Your family and friends can be excellent support givers and may also be able to handle day-to-day activities, such as childcare, house sitting, getting mail, etc. Your employers may also be supportive during this difficult period and may be able to grant you family medical leave. You may also consider contacting other families who have experienced something similar.
Take care of yourself. Make sure you eat well, sleep regularly and remember to take some time for yourself. Good physical and emotional care during this time will help you care for your relative more effectively. This will also permit you to fully enjoy your family. If you notice you are having difficulty coping, you may consider talking with a professional about your physical and emotional health during this period.
No matter what your situation is, support for your relative and getting support for yourself is essential. Enjoy your family every moment. Facing a serious illness together can be enriching as well as stressful and allows families to appreciate how precious and valuable life is.