Patients' Guide to Post-Liver Transplantation Care

Divisions of Hepatobiliary and Pancreatic Surgery and Liver Transplantation
Department of Surgery
The University of Hong Kong
Queen Mary Hospital

PREFACE

Liver transplantation is the ideal treatment for end-stage liver disease. The Liver Transplant Team at Queen Mary Hospital performed Hong Kong's first successful liver transplantation in October 1991, marking the new era of liver disease treatment in Hong Kong. However, under the influence of cultural beliefs, some people in Hong Kong cannot accept the concept of organ donation after death. The shortage of liver grafts has limited the development of liver transplantation and prolonged the waiting time of patients for liver transplantation. To solve the problem of liver shortage, the Liver Transplant Team started performing live donor liver transplantation in children in 1993 and the operation was extended to adult patients using the left lobe graft in 1994.

In 1996, the Liver Transplant Team pioneered the adult-to-adult right lobe live donor liver transplantation, which was a breakthrough in the history of live donor liver transplantation. With experience and technical refinement, we have performed over 210 adult right lobe live donor liver transplants at Queen Mary Hospital with good results. The operation has been adopted by many liver transplant centers in the world.

Liver transplantation at Queen Mary Hospital has been evolving, and has now been accepted as a routine treatment. Thanks to the contribution of every member of the Liver Transplant Team, our patient survival rate now stands at 84%. In particular, nurses of the wards of the Divisions of Hepatobiliary and Pancreatic Surgery and Liver Transplantation provide the patients with utmost patience and meticulous care. Their professional service deserves the highest tribute.

This guide was produced with the help of members of the Divisions of Hepatobiliary and Pancreatic Surgery and Liver Transplantation. It is a comprehensive guide for liver transplant patients. It also includes information on postoperative medications, which helps the patients understand the functions and side effects of the drugs. Apart from taking medications at specific time and returning to the hospital for regular follow-up, by observing advices provided in this guide and giving attention to daily activities, patients will recover rapidly and be able to resume a normal healthy life.

Professor Sheung-Tat Fan
Chief of Divisions of
Hepatobiliary and Pancreatic Surgery and Liver Transplantation
Department of Surgery
The University of Hong Kong
Queen Mary Hospital

To Post-Liver Transplant Patients:

Congratulations for your having undergone liver transplantation at Queen Mary Hospital. We look forward to your recovery and return to the normal life.

To protect your new liver, it is essential that you and your family members understand the information provided in this guide. Ward nurses and liver transplant coordinators will give you detailed explanation, and help you and your family (at least one member) to fully understand the contents. Understanding of and adherence to the advices given in this guide, and close communication with the staff of the Liver Transplant Team are two key factors for a successful liver transplant.

From All Medical & Nursing Staff of the Liver Transplant Team

A. General information after liver transplantation

(1) In Intensive Care Unit

After a 10-hour liver transplant operation, you will be transferred to the Intensive Care Unit (ICU) for meticulous management. Doctors of the Liver Transplant Team will continue to take care of your treatment.

The first couple of days after the operation are most critical. You will be connected to some monitoring equipment, drainage, arterial or venous catheters, or a ventilator, etc. The medical staff will observe and evaluate your condition with the help of the monitoring equipment.

Generally, you will be staying and monitored in the ICU for 2-3 days. When your condition stabilizes, you will be transferred to the ward of Division of Hepatobiliary and Pancreatic Surgery (HBP Division) for further management and observation. Length of ICU stay varies, depending on your condition. Doctors monitor you every day and decide on your transfer depending on the progress of recovery.

(2) In HBP wards

During your stay in HBP wards, you should follow the advice and guidance of the medical and nursing staff. Don't be anxious and upset. Support and encouragement from family and friends will contribute to your recovery.

After the transplant, you will have blood checking every day. Doctors will give you oral or intravenous medications for pain control. You can also ask the medical and nursing staff for the medications or further information if needed.

After the operation, doctors will advise you to resume a regular diet as soon as possible to obtain adequate nutrition. When you first resume diet, you will experience loss of appetite, nausea, flatulence, or even vomiting. This is probably because of the residual effects of anesthesia and slow bowel movement after the surgery. You will recover in a few days and your appetite will gradually improve. We recommend you to reduce the regular meal size and eat between regular meals. Do not get too full and avoid taking a lot of liquid before and after meals. You will also see a dietitian, who will help in developing a postoperative eating plan.

Apart from obtaining sufficient nutrition and taking medications at specific times, mild exercise is essential for recovery. The first few days after surgery, we recommend you to get out of bed and sit on a chair for at least 1-2 hours every day. Please do more deep breathing because it helps your lungs expand and enables you to cough up sputum easily. The physiotherapist will teach you how to exercise your limbs by using a bike, so that your limb muscles are strengthened, blood circulation is increased, and the risk of complications such as venous thrombosis of the legs is reduced. The level of exercise, e.g. walking, should be increased progressively.

B. Importance of medications

(1) Introduction

After the transplant, you should follow instructions given by the medical staff and take the medications at the specific times. Never stop taking or change your medications, unless the Transplant Team doctors or medical staff tell you to do so.

Upon discharge, the transplant coordinator will give you a medication record and a "Discharge Instructions" white card. Your medications and dosages are recorded clearly on the card. When your medications are changed, please remember to update the dosage(s) or delete the discarded medication(s). Records on the medication card should always be kept accurate.

When you return to the hospital, please remember to bring along the medications from home. During your hospitalization, you are advised to take medications provided by the hospital pharmacy. Most importantly, we hope that you will be responsible for your own medications, instead of having your family or any other persons to take care of them.

(2) Medication schedules

TACROLIMUS (FK506 / PROGRAF) should be taken at 9:00am and 9:00pm. In the morning of a follow-up visit, you will have blood drawn for drug level tests. Therefore, do not take this medication the morning of a follow-up visit. Do remember to bring along the required dosage so that you can take the medication after the medical staff have drawn your blood.

(3) Side effects of medicines

Please note that the following summary aims to draw your attention of possible side effects of the drugs. It does not mean that any or all side effects will occur. If you experience any abnormality or discomfort after receiving a new medicine, notify the doctors.

(4) Understanding the medicines

TACROLIMUS (FK506 / PROGRAF)

MYFORTIC (MYCOPHENOLIC ACID)

MYCOPHENOLATE MOFETIL (MMF / Cellcept)

PREDNISOLONE

LAMIVUDINE (ZEFFIX)

URSODEOXYCHOLIC ACID (URSOFALK)

NYSTATIN (MYCOSTATIN)

ACYCLOVIR

SEPTRIN

FLUCONAZOLE (DIFLUCAN)

(5) Important guidelines about medications

Because you have undergone liver transplantation and are on our prescribed medications, we hope that you do not take any other medicine. If other doctors prescribe any medicine to you, please seek advice from the Liver Transplant Team. Besides, you should not change or discontinue the medications prescribed by the Liver Transplant Team on your own.

More importantly, you should avoid taking any traditional Chinese medicine.

C. Guide to diet

(1) Diet and nutrition

• 1-2 weeks after surgery

  When you resume diet after the operation, you should first start with a small amount of water followed by liquid food, pureed diet, and then regular meals. In the first 1-2 weeks after the operation, you will be on a somewhat restricted diet. The hospital will serve you with very clean meals. You should prepare your own disposable utensils such as spoons, knives and forks, and chopsticks, etc.

  Water provided is not boiled tap water. We will give you very clean drinking water.

  During this period, please avoid eating fast food or food prepared by your family. We will withdraw the very clean meals after 1 or 2 weeks depending on your condition.

• Choice of food after transplantation

  From postoperative week 2 to the first 3 months following discharge, your diet can be less restricted, but you should remember the following points:

  i) Buy fresh fruits and frozen nutritious meat.
  ii) Food must be washed and well cooked. Make sure it is clean. Fruits must be peeled and washed.
  iii) Stick to light foods. Avoid fried or greasy foods. Wean away from highly seasoned foods.
  iv) Wash utensils before use and drink boiled water.
  v) Do not take food that has been left over night.

  Restriction on post-transplant diet depends on the function of the new liver. You should choose a balanced diet.

  You need a sufficient amount of high-quality proteins to help the body rebuild muscles and combat muscular atrophy from steroid. Foods of high-quality proteins include meat, eggs and dairy products, etc.

  You should also have a high-calorie, low-fat and low-cholesterol diet to avoid fat accumulation. Avoid fried, deep fried or greasy foods. Wean away from highly seasoned foods and high-fat meat, etc. You can choose to eat more vegetables and fruits to increase fiber intake and keep your bowels open.

  The two targets of a balanced diet are:
  To control high blood sugar and control weight.

  Control of high blood sugar

  FK506 and steroid can increase blood sugar and induce diabetes mellitus. To avoid these problems, you should control sugar intake carefully. Avoid very sweet foods. We will schedule for you an appointment with the dietitian, who will help in developing an eating plan that provides a balanced diet to meet your needs. If the diet cannot control your high blood sugar level, you might need to take oral medication or insulin injection.

  Control of body weight

  It is important to maintain a normal weight. Abrupt increase in weight will result in increase in blood pressure and other complications. Besides paying attention to the diet modification, adequate exercise can effectively burn calories and slow down weight gain.

(2) Control of diet

• Foods allowed

  Foods bought from the market such as fresh vegetables, fish, meat, seafood, eggs, etc. should be thoroughly washed and well cooked before eating.

  You should choose fresh fruits and have them washed and peeled. Canned fruits are also allowed. Milk and dairy products allowed include tetra pak milk drinks, individually wrapped processed cheese, small canned evaporated milk, condensed milk and milk powder, etc.

  As for snacks, individually wrapped crackers, cakes and bread, or small packed or canned sweets and crisps are allowed. Freshly cooked soup, canned and tetra pak fizzy drinks, and foil packed instant drinks are also allowed.

• Foods to avoid

  1. Expired, partly-cooked and rotten meat or eggs
  2. Cold meat or sashimi, etc.
  3. Uncooked vegetables and salad
  4. Overripe or bruised fruits
  5. Fruits difficult to wash and peel, for example, grapes, strawberries, cherries and kiwifruits, etc.
  6. Highly seasoned foods
  7. Milk drinks containing live lactobacilli; yogurt ice-cream, etc.
  8. Loosely packaged or improper storaged crackers, cakes, bread, sweets and nuts, etc.
  9. Unboiled tap water and unfrozen overnight soup

D. Guide to daily hygiene

(1) Personal hygiene

Personal hygiene is essential before and after operation. A daily shower or bath keeps your skin clean and prevents growth of bacteria. If you worry that the wound will get wet in bath or shower, we recommend you to clean your body with a wet towel and change clothes that are in close contact with the body every day during hospitalization with the help of your family or hospital healthcare assistants. When the wound heals and the staples are removed, you will be able to bathe or shower as usual. Remember to dry the gaps in an incision and keep the incision dry and clean. If the incision oozes fluid or if you suspect infection, please contact the doctors immediately.

If you find your skin dry, you may use a mild bathing lotion and apply an appropriate amount after bath or shower.

(2) Quit smoking and drinking

Please do not smoke and drink. Smoking damages your lung and predisposes you to pneumonia.

Alcohol harms the liver further. Please quit drinking.

(3) Avoid crowded public places

In the first 3 months after liver transplantation, you should avoid visiting crowded public places like cinemas, restaurants and department stores, etc. Avoid contact with animals and birds to prevent infection.

(4) Exercise and social activity

During your recuperation period or the first several weeks after hospital discharge, you will feel tired easily. Please do more deep breathing and take more rest. Sometimes you will find weakness in the muscles all over your body, and leg muscles in particular. This is a result of a lack of exercise after surgery and a side effect of steroid hormones. To strengthen the leg muscles, you are recommended to progressively increase the level of exercise. Walking, cycling and working out on exercise bikes are typical choices.

Basically, you can do whatever you want to do, including sit-ups, abdominal exercises and swimming, which help to tighten abdominal muscles, and flatten your tummy. We encourage you to return to school or work as soon as possible, but in the first 3 months of recuperation, please seek advice from the doctors and consider your health condition before making a decision.

If you plan on a trip to a foreign country, please first talk to the Transplant Team doctors.

(5) Dental care

After liver transplantation, you should beware of oral hygiene and keep your teeth healthy. Always brush your teeth and rinse your mouth after eating. If you receive dental care or dental treatment, please let the dentist know that you are a liver transplant patient and that you are on immunosuppressants.

(6) Pregnancy

For female patients, menstruation may temporarily stop after surgery, but there is still a chance to be pregnant. Contraceptive methods should be practised. You are advised to wait at least one year following transplantation before trying to conceive.

If you decide to have children, please discuss your plan with the Transplant Team doctors. Although a number of women are able to have children after liver transplantation with minimal risk to the mother and baby, pregnant transplant recipients will need to be closely followed.

(7) Avoid contacting patients with infectious diseases

If your friends or relatives suffer from infectious diseases such as influenza and pneumonia, or in particular communicable diseases such as chicken pox and hepatitis, please avoid physical contact with them. If they are members of the household, you should take general precautions, for example, use separate tableware, and cover your mouth when coughing, etc. However, it is still possible for you to be infected. If you are unfortunately infected, you should inform the Transplant Team doctors, who will give you advice and arrange necessary treatment.

E. Understanding rejection symptoms

After liver transplantation, you may experience some degree of rejection to the new liver. With early treatment, it is possible to suppress rejection. Because the medications you are on predispose you to a higher risk of bacterial, viral and fungal infection, you should be familiar with the symptoms of rejection and signs of infection. If you find any of the problems below, please call the Liver Transplant Clinic or contact the Liver Transplant Team doctors as soon as possible.

1. Signs of infection - Display of symptoms similar to those of influenza, which include fever (above 37.6^oC or 100^oF), chills, severe vomiting, shortness of breath, or diarrhea, etc.

2. Signs of rejection - Yellowing of eye and skin, dark urine, fever, pain at liver area.

3. Problems after using FK506 - Diarrhea for over 24 hours, nausea, or vomiting that stops you from taking medications.

F. Introduction to possible complications

(1) Hemorrhage

The highest risk of bleeding is in the first 48 hours after transplantation. It can occur in the abdomen or the gastro-intestinal tract.

1.1. Intra-abdominal bleeding

1.2. Gastrointestinal bleeding

(2) Bile duct obstruction

(3) Bile leakage

(4) Hepatic artery stenosis or thrombosis

(5) Portal vein thrombosis

(6) Infection

G. Guide to follow-up visits after liver transplantation

After discharge from the hospital, you are responsible for continuing appropriate treatments and cares according to the advice given by the Liver Transplant Team. After discharge, you will go to the Liver Transplant Clinic on 4/F, Block S, Queen Mary Specialist Clinic, Queen Mary Hospital for routine follow-ups as scheduled. If you notice obvious abnormality in your body, please report to the Liver Transplant Team.

(1) Emergency numbers of the Liver Transplant Team

If you have any problems after discharge, please call:
Office hours: 2855 3634 (Liver Transplant Clinic) or 2855 5800 (voice mail)
For emergency, please page at: 7306 9491

(2) Return for follow-ups as scheduled

In general, the number of follow-up visits is not fixed. What you need to do is to return for follow-up, so that the medical staff are able to give you safe and appropriate medical instructions. Please follow instructions given over the phone, or make appointments with the Transplant Team medical and nursing staff in the hospital.

Rejection and infection are commonly seen in liver transplant patients, so you need to undergo laboratory blood tests and evaluation. Please remember to bring along the required dosage of FK506 on the day of a follow-up visit, and take it after blood drawn at the outpatient clinic.

For diabetes mellitus patients: If there is no special instruction, please have your breakfast and insulin injection before going to the clinic. If necessary, an appointment with a diabetes specialist will be arranged for you.

You should record clearly your medications and the required dosages prescribed by the Liver Transplant Team doctors. Keep enough medications (an amount enough to last until the next scheduled visit). Without the doctors' instruction or a phone call indicating a change of medications, never stop taking or change your medications.

If you have changed your correspondence address or phone number, please inform the staff at the outpatient clinic reception.

H. Introduction to the Hong Kong Liver Transplant Patients' Association

The Hong Kong Liver Transplant Patients' Association (HKLTPA) was formed by a group of patients who have undergone liver transplantation and who are waiting for liver transplantation, family members who have donated part of their livers, and the families of all these people. It is a non-profit making organization registered under the Societies Ordinance of the Hong Kong SAR in July 1998. It was later accepted as an approved charitable institution and given the tax-exempt status by the Inland Revenue Department of the Hong Kong SAR.

Service pledge

1. Enhance sharing, encouragement, and support among patients.
2. Promote organ donation.
3. Counsel and care for liver disease patients and their families.
4. Arouse the attention of society on prevention of liver diseases.
5. Assist patients to return to society.

Contents of service

1. Visit patients and encourage them to live positively.
2. Organize gatherings to widen patients' social circle and provide patients with chances for leisure activities.
3. Organize health talks and counsel patients.
4. Different promotional programs to encourage organ donation.

Target of service

Needful liver disease patients and families.

HKLTPA welcomes all liver disease patients and their families. We hope to see every one of the members, patients, and people from society actively participate in and support the activities of HKLTPA and sign on organ donation cards. We also hope to receive valuable opinions and suggestions from you.

Enquiries

For enquiries, please call HKLTPA Executive Members:
- Ms. Lai 9495 7587
- Mr. Chan 9465 1513
- Mr. Lam 9198 1941
or HKLTPA web site at http://www.livertpa.org
or Ms. Lam / Ms. Lee of the Division of Liver Transplantation at Queen Mary Hospital

Divisions of Hepatobiliary and Pancreatic Surgery and Liver Transplantation
Department of Surgery, The University of Hong Kong
Queen Mary Hospital

Consultants:
Professor Sheung-Tat Fan
Professor Chung-Mau Lo
Associate Professor Chi-Leung Liu
Dr. See-Ching Chan
Dr. Wan-Ching Yu
Mr. Raymond Wai-Man Mak, Pharmacist
Ms. Georgina Ho, Dietitian
Ms. Li Wah Chun, APN (Ward & Unit Management)
Ms. Banny Lam, Transplant Coordinator
Ms. Evelyn Lee, Transplant Coordinator

Editorial members:
Ms. Suk-Ching Lam, APN
Ms. Mei-Shan Lam, RN
Ms. Wai-Yan Mok, RN
Ms. Mei-Kuen Lai, RN
Ms. Vivien Tsang, RN
Ms. Yuen-Ching Wong, WS

Declaration:
Information contained in this guide is provided with the assistance of related specialists. We make efforts to ensure accuracy of information and avoid misguidance. Because conditions vary in different patients, please seek advice from professionals if you have any queries.

ALL RIGHTS RESERVED