SECTION 22: AFTER DISCHARGE

The whole purpose of your transplant is to return you to a normal lifestyle. There are very few restrictions. Here are some points to note that might answer some questions you have about your new lifestyle.

This is very important in maintaining your optimum health. It increases energy, reduces stress, aids sleep, improves digestion and helps your emotional and psychological stability.

Build up your exercising gradually from walking to more strenuous activities, such as running and cycling. Indoor/outdoor activities are limited only by threat of potential injury or limits of physical stamina. Swimming may be resumed after about six months. Once you are discharged you are encouraged to return to your normal activities. Your energy level will slowly increase. Each day you will find you can do more and more. Moderation is the key. You may take long walks or walk up and down stairs.

Muscle weakness is common in most liver diseases and it will be worse immediately after liver transplantation. You should maintain a regular exercise program that is geared for your individual progress.

Regular physical activity and exercise are necessary post-liver transplant in order to maintain normal weight, minimise the destructive effects of prednisone on muscles and bones and to reverse pre-transplant deconditioning. It will also increase energy levels and fitness, reduce stress and help emotional and psychological wellbeing.

You must maintain a regular exercise program, progressed specifically to your own individual needs.

Intensity - light to moderate - you should still be able to talk whilst exercising.

Avoid strenuous activities particularly in the initial stages post-transplant. These can be resumed once your energy levels and physical stamina have improved.

Duration - up to 45min of continuous exercise - 15-20 mins if exercise is more strenuous.

Initially you may need to exercise for shorter periods several times a day until you build up strength and endurance.

Walking is an easy, effective and inexpensive form of exercise, associated with very few injuries. Other safe forms of exercise include swimming and stationary cycling.

* Running/jogging/jumping and other high-impact activities are not recommended due to the increased risk and severity of injuries.

5 minutes of each is encouraged to help prevent muscle tears and unnecessary soreness with exercise. Gentle stretching is also encouraged prior to exercising.

People whose liver disease was caused by alcohol should never drink again.

Alcohol should be avoided for the first year after your liver transplant under any circumstances. Alcohol is processed by the liver and may produce changes in your liver function tests. These changes can be confused with signs of rejection or liver infection. Moderate alcohol consumption may damage the new liver.

If you wish, you may have an alcoholic beverage to celebrate special occasions. Please limit your intake to one to two glasses of wine or champagne or one to two glasses of beer.

People whose liver disease was caused by alcohol, or people who have a history of excessive alcohol use that is thought to have contributed to their liver disease, should not drink again. This is sometimes a difficult task, and issues surrounding life-long abstinence should be explored prior to transplant. If you feel you are having difficulties complying with this requirement following transplant, it is very important you discuss these issues with your transplant doctor or nurse who will arrange appropriate support.

The choice to have children is an important decision that is influenced by a number of factors that should be discussed with your partner, transplant physician and obstetrician/gynaecologist. Medications you are taking may have an effect on a developing foetus, therefore it is unwise to embark on an unplanned pregnancy.

Female patients generally resume their menstrual cycle after liver transplantation. High-dose prednisone may stop the menstrual flow, but ovulation (the time when you are fertile) will continue. Therefore, you may become pregnant even though you are not yet having normal periods, so birth control is necessary. Ask your physician for advice.

It is vitally important that you notify Sr Gleeson on (02) 9515 7263 or Nerida Menzies or Maria Tassone on (02) 9515 7268 if you change your contact telephone number even temporarily. We sometimes need to notify you urgently about blood test results and must have the correct contact telephone numbers at all times.

If you are underweight, you need to gain weight to ensure that you have adequate nutritional reserves for protection during any periods of rejection or infection. Being overweight increases the risk of developing other problems. Keeping your weight within an ideal range is therefore most important. The dietitian will be able to discuss with you what your target weight should be and how to attain it.

New medical guidelines for assessing a patient's fitness to drive came into effect on October 1, 2003. These guidelines apply throughout Australia and have been endorsed by all driver licensing authorities, the Royal Australian College of General Practitioners, the Australian Medical Association and other specialist bodies. These guidelines clearly outline the responsibilities of drivers, examining health professionals and licensing authorities in the licensing.

All States and Territories in Australia have laws about reporting health conditions that might affect a person’s ability to drive safely. These laws have been created to protect public safety.

The laws require drivers to report to the Driver Licensing Authority any permanent or long-term illness that is likely to affect their ability to drive safely.

Your doctor or other members of the transplant team will not normally communicate directly with the Driver Licensing Authority (RTA in NSW). However, your doctor will provide you with advice about your ability to drive safely and can provide a letter or report to take to the authority.

The guidelines list a number of conditions that drivers MUST report to the Driver Licensing Authority, if they wish to continue to hold a drivers license. These conditions include

In both conditions, a conditional license may be granted. Further information can be obtained from the AUSTROADS website at http://www.austroads.com.au.

Most people can resume driving about six weeks after the operation. Even if granted a conditional license, you should ask yourself the following questions before driving:

Caution and restraint in this early post-operative period will help assure your personal safety and the safety of others.

Although you will have been looking forward to the day when you leave the hospital, it is normal to feel slightly apprehensive and insecure. These feelings usually only last for a few days. Once you realise that nothing awful is going to happen because you are not having your blood pressure checked regularly, you will soon gain your confidence and independence.

It may take time to adjust to your new healthy role, not only in yourself and your capabilities, but also in your relationships with your family and friends. They too have to adjust to accepting and treating you as normal and healthy.

At the same time, you may miss the constant attention you have received before and throughout your transplant. It is important to remember that family and friends have been under enormous pressure as well.

Transplant patients are advised not to take any herbal remedies as abnormalities of Liver Function Tests have been reported after use of certain herbal preparations, while the effects of many herbal preparations on the liver are not known.

There have been a number of rejection episodes reported in patient’s taking the herbal preparation “St. John’s Wort”, which many people take for depression. Valerian is another preparation which is known to cause abnormality in liver function tests.

These preparations may interact with the absorption or metabolism of your immunosuppressive medications, tacrolimus/cyclosporin and altering your blood levels.

Do not self-medicate with any medication other than those prescribed by your doctor.

You may not lift anything that weighs more than 7kg (15lbs) - about the weight of an average bag of groceries - for eight weeks after your surgery.

The Support Group does valuable work for liver patients. It also offers the chance for liver recipients and their families to get together socially. Ask at the clinic for more information. An Application Form to join the Liver Support Group is included in the back of this Manual. Please photocopy it or tear it out if you want to join.

When a patient goes home after a transplant it is very rare for them to need full time nursing care. It may be necessary for a community nurse to visit to do daily wound dressings. The nursing staff will arrange this before you are discharged. Apart from that, you should be well enough to do most things, like showering and dressing yourself.

Following your transplant you should be able to return to your normal lifestyle. Most people are able to return to school or work. You will know when you are ready for this. Going back to work part-time, if possible, is a good way to build up your stamina. You will be advised at the clinic about your fitness for work. Individual circumstances will vary.

Sexual activity can be resumed as soon as you feel able. It is a good form of exercise! It may take a while to regain confidence and your sex drive, partly due to your medications and also your previous feelings and attitudes from experience of your illness. Please feel that you are able to discuss any concerns or worries with members of the Liver Transplant Team.

There is a much higher risk of skin cancer amongst all transplant patients. Therefore it is most important to avoid sunlight for prolonged periods of time. Wear long sleeves and a hat at all times when outdoors and avoid being out in the sun between the hours of 11.00am to 3.00pm daylight-saving time and 10.00am to 2:00pm in Eastern Standard Time. Apply SPF15 or higher sun protection cream or lotion to any exposed areas of the skin. If you are sitting outdoors, you should sit in the shade.

You may wish to get involved in sport again. If you do, do it gradually. Contact sports should be avoided. The Australian Transplant Sports Association has “Come and try” days to encourage transplant recipients to try new and different sports. Ask at the clinic for more information.

The Transplant Sports Association is dedicated to the promotion of sport and recreation amongst organ transplant recipients. They cater for all levels of sporting abilities, from the “never played” to the highly competitive. Their activities include sports, social events and weekends away. Meetings are held monthly on a Sunday and usually consist of a social get-together, BBQ and a sporting activity that may be a “COME & TRY” day. National Transplant Games are held every two years and the World Transplant Games are held every two years when the Nationals are not on. Contact Heather Edgell on (02) 9531 2589 or email feather4@dodo.com.au more information available on the Transplant Australia web site :www.transplant.org.au

If you are likely to need any wound dressings following your discharge home, arrangements will be made through the Discharge Liaison Sister for these to be undertaken by community nurses if necessary. This will be discussed with you as part of your discharge planning.

Ultrasound - This is the most commonly used technique to get a picture of the liver and bile duct system. Ultrasound involves using a transducer or handpiece to generate sound waves, which are bounced off the liver to product an image of it on a television screen. In this way, ultrasound can show how big the liver is and whether there are any changes, lumps or areas of abnormality. It also shows the size of the bile ducts and whether they are blocked. If necessary, ultrasound can be used to measure blood flow through the veins and arteries supplying the liver (doppler ultrasound). Ultrasound is done after six hours of fasting. It is an easy and painless test and does not involve x-rays.

CT scan (Computed Tomography) - In this procedure, a series of x-rays are taken which a computer builds into a three-dimensional picture of the area under investigation. The liver, blood vessels, gall bladder, bile ducts and nearby organs such as the pancreas, spleen and kidneys can be seen, as can any cysts or tumours. It is usual to need to fast for 4 hours before the test. Just before the test is performed, you may be asked to drink a special liquid so that the stomach and intestines are more easily identified. The radiologist may inject a dye into the bloodstream to obtain a clearer picture of blood vessels. This dye may cause an allergic reaction in some people. If you know you are allergic to iodine or contrast dye, you should notify your doctor. If your kidneys are not functioning normally, your doctor may decide to perform the study without the injection of dye. A CT scan takes about 45 minutes and is performed lying down in a comfortable position.

Angiogram – This test is not required in all patients. It involves passage of a fine catheter into the artery in the groin, which is then passed internally up to the artery supplying blood to the liver. Contrast dye is injected through the catheter and x-ray pictures are taken of the blood supply of the liver. In patients with suspected or known liver cancer, this test may be combined with a CT scan.

MRI / MRCP (Magnetic Resonance Imaging) – MRI is another way of taking pictures of the liver and other internal organs, and does not involve x-rays. MRCP is a special form of MRI that allows examination of the bile ducts without insertion of any tubes or catheters. For an MRI scan, you have to lie on a narrow bed that slides inside a tunnel. People with claustrophobia (fear of closed spaces) may find this test difficult.

ERCP (Endoscopic Retrograde Cholangio-Pancreatography) - This test is not required in all patients. It is a special test for examining the bile ducts. An endoscope is passed down through the mouth and stomach and into the upper part of the small intestine. A special fluid that shows up on X-ray is then injected into the opening of the main bile duct at the point where it drains into the small intestine. The resulting x-ray picture is used to diagnose certain diseases affecting the bile ducts. Additional procedures can be performed at the same time, such as removal of bile duct stones, or insertion of a plastic tube (stent) if bile flow is impeded. ERCP may be associated with complications. You should discuss these risks with your doctor.

PTC (Percutaneous Transhepatic Cholangiogram) - With the use of sedation or local anaesthetic, a small needle or catheter is passed into the bile ducts through the skin and liver. Pictures are taken of the bile ducts. This procedure allows access to the liver so that procedures, such as treatment of bile duct narrowing, can be performed.

Endoscopy - The inside of the oesophagus (gullet), stomach and upper small bowel can be examined using a flexible telescope called an “endoscope”. This procedure is done using mild sedation injected into a vein and is usually not unpleasant. A similar device called a “colonoscope” is used for examining the large bowel via the anus. Endoscopy is commonly done before transplantation to check for the presence of varices, ulcers and cancer of the gastrointestinal tract. Your doctor will discuss the specific risks of an endoscopic procedure.

Liver biopsy - A liver biopsy involves collecting a small sample of tissue the size of half a matchstick from your liver by passing a needle through the skin into your liver. The sample is then examined under a microscope. It is an important way that your doctor can determine the cause of a liver problem, and assess the severity of any damage. Liver biopsy usually requires admission to hospital for the day, and is generally performed by a gastroenterology registrar or radiologist after an ultrasound. You lie flat on your back in bed as the doctor applies antiseptic to the skin over the right side of the rib cage then inject a local anaesthetic. The biopsy needle is then passed briefly through the skin and into the liver before being removed. The entire procedure takes a few minutes and generally causes only minor discomfort. Liver biopsy may occasionally be required prior to transplant, and is not uncommonly required after transplant if there is deterioration of liver blood tests. The biopsy is a critical test for assessing rejection, hepatitis, or other causes of liver disease.