Common questions in the Pre Transplant phase:

 

Q: What makes my skin and eyes appear yellow?

A: Your skin and eyes appear yellow because you have a condition called jaundice. Jaundice occurs because your damaged liver is unable to remove ‘bilirubin.’ Therefore, an increased amount of bilirubin remains in the bloodstream resulting in the yellow appearance. As well as your skin and eyes appearing yellow, your stools may also be light in colour and your urine may be darker than normal. Jaundice itself does not cause any problems however the underlying disease should be treated.

 

Q: Why is my skin so itchy?

A: The high amount of bilirubin in the blood can also cause your skin to be itchy. This itchiness can be relieved by avoiding hot showers, using moisturising shower gels rather than soap, using moisturiser after showering and avoiding wearing clothing with high wool or synthetic contact. Medications can also help but if the itchiness persists speak to your doctor.

Q: How is this extra fluid treated?

A: Reducing salt intake can help control the accumulation of fluid. However, diuretics are often needed (such as frusemide or spironolactone) which help the fluid to be removed via urine. You may also be required to have an ascitic tap to remove ascites (fluid collecting in the abdomen). This is a procedure whereby a needle is inserted into the abdomen and the excess fluid is drained away.

Excess fluid in the chest cavity is known as a pleural effusion. This may cause you to become short of breath and you may need to wear some oxygen to help with your breathing. Pleural effusions may be treated with diuretics, however sometimes a pleural tap is needed. This is similar to an ascitic tap but in this case a needle is inserted into the space surrounding the lungs to drain the excess fluid.

 

Q: What do my ‘numbers’ refer to?

A: Your numbers refer to a group of blood tests known as liver function tests. These tests provide a measure of your liver function, and give your doctors and nurses an indication of the injury and inflammation patterns occurring in the liver. They may also give an indication of the cause of your liver disease.

Q: What is encephalopathy and why do I need to have lactulose so often?

A: Encephalopathy refers to a change in mental state due to the build up of ammonia and other chemicals in the blood stream. These can enter the brain and cause you to become confused, drowsy, forgetful and may affect mood and behaviour changes. The most accepted form of treatment is lactulose. Lactulose acts primarily by clearing toxins including ammonia from the bowel. If you are suffering from symptoms of encephalopathy it is important you take enough lactulose to have at least 2-3 soft bowel actions per day.

 

Q: Why do I bleed so easily from different parts of my body?

A: Your liver has many functions, one of which includes producing clotting factors. Clotting factors are responsible for preventing internal and external bleeds throughout the body. Before any procedure where you are at risk of bleeding, blood products such as packed cells, platelets or fresh frozen plasma may be given depending on the results of a recent clotting profile.

 

Q: What happens when I get activated onto the Liver Transplant waiting list? 

A: A family meeting is arranged with you and family or friends of your choice. You will sit down with one of our liver transplant physicians and discuss the risks/benefits of liver transplantation and your responsibilities as a potential recipient. This will be the time to discuss: the results of the assessment tests, the recommended treatment and your specific risk factors.

Activation means that you have been given the “green light” to "go ahead". Your name, blood group, size and weight are entered onto both a national register, and our local transplant waiting list. Each time a donor organ becomes available, it is offered to the local State liver transplant units. If the originating State is unable to use the liver, the organ is referred on to the remaining transplant units in Australia on a rotation basis. The transplant coordinators then check their waiting lists to see if they have a "match". If they do, the best-matched patient, in terms of blood group, weight, and need (person who needs it the most – usually the sickest ‘match’) is called in for transplantation.

 

Q: How long will I have to wait? 

A: The waiting is a difficult time for most patients. It may last just a few days or stretch to years. The average wait is 8 to 12 months. You may feel that your time for transplant will never arrive and it is normal for people to feel anxious whilst they are waiting for the transplant. Every time the phone rings you wonder whether it may be the hospital calling. For you to receive a donor liver the donor must have the same blood group as you and must be approximately the same size. This is the reason you may find that others who come on to the waiting list after you may be transplanted before you.

 

Q: What is a “dummy run”? 

A: A “dummy run” occurs when a potential recipient is called in for a liver transplant that does not go ahead. There are various reasons this may occur however, the most common is when the surgeons find that the liver is unsuitable for transplantation. Sometimes you may have an infection that does not allow you to be transplanted on that day. Dummy runs are common and occur about 1 in every 3 times a patient is called in.

 

Q: What does it mean to be “on hold”? 

A: Sometimes patients are temporarily taken off the active liver transplant waiting list if they develop a severe infection, or their liver temporarily deteriorates, or if they fail to comply with medical treatment (i.e. medication, diet, physiotherapy, education or outpatient clinic attendance). This is usually just a temporary situation and patients are put back on the liver transplant list when they are medically stable.

 

Q: What does it mean to be “delisted”? 

A: There are also some very rare occasions where people improve to the point where they no longer need a transplant, and are delisted (taken off the waiting list) because they are too well. Patients may also be delisted if their disease has progressed to a point when transplantation is too risky and would result in a poorer outcome. Patients may also be delisted if they fail to comply with medical therapy (eg: drinking alcohol and/or smoking while on the waiting list, ignoring advice of doctors, physiotherapists etc).

 

Q: How Can I Prepare For Transplant? 

A: Maintain good health by doing some regular exercise (discuss this with your liver transplant doctor or physiotherapist). It is important to eat a high kilojoule, nutritionally balanced diet to prevent weight loss and to keep your body in a sound nutritional state for transplantation.

Attend the education/support group meetings. This will help you understand the issues raised by liver transplantation and give you a chance to interact with patients going through similar experiences.

Stop driving when asked to by your doctor. The doctor may request this for your safety and the safety of other road users. This is only a short-term measure, and will be revised as your general health and alertness improves after your transplant.

 

Q: What tests are performed on the donor liver?

A: There are many tests performed on the donor patient to make sure that the organ donor has no diseases that could be passed on to you, and that the liver is suitable for transplantation. These tests include testing for blood group, liver function, HIV and hepatitis B & C.

There is an increased need to consider all donor livers because of low Australian donor rates and large number of people waiting for liver transplant. Therefore older donors or donors with Hepatitis B or C positive are considered. There is good evidence that these livers can work well. A donor liver that tests positive to hepatitis B or C (where there is no evidence of active disease or infection) may be offered to patients who are positive for hepatitis B or C, respectively.

The Liver Transplant team consider the quality of the donor liver carefully and if it is thought that the risks are too high for the patient then the transplant will not proceed. If it is thought that the donor liver is suitable for transplantation, but there are special risks, the team will discuss this with you and your family.

 

Common questions in the Post Transplant phase:

 

Q: How long will I take to recover?

A: The average stay in ICU is two days, but this depends on a number of things, including how sick you were prior to the transplant, how well your liver and kidneys are working and whether there are any problems with your lungs. The breathing tube put in at the time of the operation is generally removed the following day. The average stay in the ward after transplant is about two weeks. The period of stay may be longer if there are complications.

Most people, although well, take many months to get over the surgery and may not feel their “normal self” again for up to six months after surgery.

When discharged from the hospital patients are usually able to shower themselves and do some basic tasks. However, patients may be slow to regain strength and still tire easily. Carers will need to help with cooking, shopping and accompanying the patient to clinics during this recovery time.
 

Q: What can I do physically long term after my transplant?

A: Most people return to normal physical activity within a few months after liver transplantation. Lifting should be avoided for the first 3 months. Sports activity can be resumed after 3 months, but contact sports should be avoided for six months. Sexual activity can be resumed when desired. Most patients are capable of returning to work.

Q: What drugs do I need to take long term?

A: Immunosuppressive medications are used to lower your body’s immune response, therefore reducing the chance of rejection. As these medications work to reduce your natural immune response, they also make you more likely to suffer from infections. Patients are required to take life-long Neoral (cyclosporin) or Prograf (tacrolimus).

Transplant patients are advised not to take any herbal remedies. Do not self-medicate with any medication other than those prescribed by your doctor.

 

Q: Do immunosuppressive drugs have side effects?

A: Yes. Some of these side effects include high blood pressure, steroid induced diabetes, osteoporosis, tremors, weight gain, impaired kidney function and increased risks of cancers and infections.

Q: Will my physical appearance change?

A: Physical changes that may occur include weight gain, moon shaped face, acne, sun sensitive or fragile skin, swollen gums and increased body hair. Physical changes after your transplant are primarily due to the side effects of immunosuppressive medication. These changes are not permanent. As your body adapts to your new liver, the transplant team will be able to reduce your medication, which will reduce the medication side effects.

Changes in appearance can be distressing. Physical changes do have psychological effects, and if untreated, problems such as depression and anxiety can affect your mood and motivation. Should you experience these emotions, discuss with your clinic nurses, as assistance is available from services such as psychiatrist, psychologist, social worker and pastoral care worker. It may be useful to speak with other patients who have been through a similar experience. This can be arranged for you.

Q: Can my original disease occur in the new liver?

A: This is a complicated question. Most diseases have the ability to recur in the new liver. In patients transplanted for hepatitis C this disease recurs in 100% of patients. For a detailed discussion regarding this issue you should raise it with your liver transplant physician.