How do I need to prepare for transplantation?

If you have an active status on the transplant waiting list, it is important that your transplant team be able to contact you day and night, no matter where you are. There is a limited amount of time (60 minutes) during which the transplant team must decide whether to accept or decline an offer of a donor liver. If you cannot be contacted, the team will pass the liver on to the next candidate. Your transplant team may provide or suggest that you purchase a beeper. Make a list of people who need to be notified that you are having a liver transplant. Have someone make these calls while you are on the way to the hospital.

You may wish to consider packing an overnight bag in preparation for your hospitalization. You can include personal items, a bathrobe, slippers, and other items to make your stay more comfortable. You should leave valuables at home, however. You may need a phone card, credit card, or cell phone to make personal calls. Of course, you probably will not have to rush emergently to the hospital once you are called. Instead, you will likely have several hours to arrive—but packing a bag will be one less concern if you have already taken this step. If you are driving to the hospital, choose someone to drive you who will be available when the time comes. You may also wish to designate a back-up driver. Become familiar with the route to the hospital and where you need to go when you arrive. If you will be flying to the hospital, gather information on the flight schedules of several airlines and alternative travel options. You will also need a plan to get from the airport to the hospital.

If you have children, plan who will take care of them during your hospitalization. They may even need care plans that can begin in the middle of the night. If they are old enough to understand, talk to your children about your need for surgery and explain that you will be away from home during your hospitalization. Keep them abreast of the plans for their care while you are away.

It is important to establish a healthcare proxy, living will, or power of attorney before undergoing the transplantation procedure. Although the expectation with transplantation is rapid success, you may be incapacitated and unable to make decisions on your own behalf at some point. Discuss your wishes with your family or healthcare proxy so that these parties are fully informed and can carry out your plan. Your physician or social worker can help you with this difficult task.

Finally, take steps to ensure that you are in the best possible health before your surgery. Eat a healthy diet, take your medications, exercise, and talk about your feelings. Spend time with your family and friends, and avoid stress as much as possible.

While you are waiting for your transplant, you should try to remain as physically fit as possible. This will aid in your recovery. Even if you become weak and unable to leave your home, you can still exercise to some degree. Deep breathing, tightening and relaxing your muscles, stretching, and leg lifts are possible. You can try to do some light weightlifting with soup cans or rolls of coins. Walking is an excellent form of aerobic exercise that will help you maintain fitness and stamina.

It is important to be realistic about your goals. The longer you have been ill, the longer it will take you to regain your strength. This applies to both the patient awaiting transplantation and the recipient of a transplanted organ.

You may want to seek out the assistance of a physical therapist to set up a reasonable program with achievable goals. Your body will tell you when you are overdoing things. If you feel pain or excessive fatigue, you may have done too much and should rest. Even though the level of exercise may be light, it is important to warm up in the beginning and to cool down at the end. Stay well hydrated, albeit within the limits your doctor has recommended if you have fluid retention problems. You must realize that you will have “good” days and “bad” days, and you should adjust your workout accordingly.

You may wish to join a local health club or community center. Exercising with others can be motivational and keep you on a regular schedule. Try to schedule your exercise during your “best” time of day. For some people this is early in the day; for others exercising later is better. Also, try to vary your workouts to keep them interesting, because your level of fitness has a direct correlation with your recovery after transplantation.

In many diseases, adhering to a specific diet is helpful in controlling the progression of the disease. For example, patients with heart disease can reduce the risk of heart attack by following a low-fat, low-cholesterol diet. Unfortunately, no specific diets appear to benefit the liver directly. Instead, you should focus on eating a generally healthy diet with the recommended balance of food groups. Eating a healthy amount of fruits, vegetables, cereals, and meat provides you with the proper balance of carbohydrates, fats, and proteins. Some patients with liver disease have diminished appetites and require supplementation with small-volume, high-calorie, wellbalanced liquid meals such as Ensure, Boost, and Sustacal. Eating more-frequent, smaller meals may be helpful as well.

Many patients with liver disease are prescribed dietary modifications to help them manage some of the side effects of cirrhosis. For example, patients with fluid retention (ascites or edema) may be on a low-sodium (approximately 2,000 milligrams per day) and fluidrestricted (approximately 2 liters or 67 ounces per day) diet. A dietitian from the liver transplant team can give you practical advice on how to meet these goals.

Patients with hepatic encephalopathy are often advised to significantly reduce their protein intake to gain better control of their encephalopathy. This recommendation can be dangerous and may result in severe protein malnutrition, which in turn may lead to muscle wasting, weakness, and poor wound healing. Although it is true that proteins are metabolized into more of the toxins responsible for hepatic encephalopathy compared with other food types, proteins are a necessary part of the diet. Patients with advanced liver disease are catabolic— that is, they are not adding fat and muscle to their bodies. Instead, the calories and energy brought in by their food intake are used to address the needs of the liver and other organs. In fact, these patients need more calories and proteins than healthy individuals just to maintain their weight and muscle mass. Thus any limitation of protein results in progressive loss of muscle and body weight.

Vitamin supplementation may also be necessary, particularly in patients with the cholestatic liver diseases of primary biliary cirrhosis and primary sclerosing cholangitis. These patients may become deficient in vitamins A, D, E, and K. If patients with liver disease can eat a healthy diet, then adding the standard multivitamins to the diet is usually not necessary.