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FAQ's

FAQ’S FOR LIVER RECIPIENTS

When does a liver transplant need to be done?

The liver has many jobs to do such as to helping to digest your food, clearing some wastes from your blood, making proteins that help your blood to clot, storing glycogen for energy, breaking down many poisons and medicines and many more tasks. When the liver is seriously damaged, there is no treatment that can help the liver do all of its jobs. Therefore, when a person reaches a certain stage of liver disease, a liver transplant may be the only way to prolong his or her life. The most common reason for liver transplantation in adults is cirrhosis, a disease in which healthy liver cells are killed and replaced with scar tissue. The common causes of cirrhosis are alcohol abuse, hepatitis due to B and C viruses, fatty liver disease.

The most common reason for transplantation in children is biliary atresia, a disease in which the ducts that carry bile out of the liver are damaged. Liver transplant may also be done for some type of liver cancers.

What are the signs of liver failure?

The liver only starts to fail when more than three fourths of it is damaged. Once a person shows signs of liver failure, it means there is not much of the liver left for the body to rely on.

Signs of liver failure may include the following:
  • Yellow skin and eyes (jaundice)
  • Forgetfulness, confusion, or even coma (encephalopathy)
  • Feeling very tired (fatigue)
  • Build-up of fluid in the stomach (ascites)
  • Vomiting of blood from veins in the oesophagus and stomach (haemetemesis)
  • Muscle wasting
  • Poor clotting of the blood
  • Nausea and Vomiting
  • Loss of Appetite
  • Weight Loss
  • Extreme itching sensation
  • Dark gray coloured or clay coloured stools
  • Shortness of Breath
  • Swelling of the legs

How is the decision made whether I need a liver transplant or not?

If the doctors believe that a patient with liver failure is not likely to live for one more year, he or she would become a candidate for liver transplantation. This is, however, a very complex issue and must be answered on a case by case basis. You must first undergo a variety of laboratory tests, x-rays and consultations. You may need to be admitted to the hospital to carry out these tests. Once they are completed, your test results are reviewed by your doctor to decide whether a liver transplant is the best choice for you.

If you are found to be appropriate for a transplant, you will be placed on the waiting list for a liver transplant. Once in a while, patients are found to be too healthy for a transplant. These patients may then be followed closely for signs of more liver failure. As their liver gets worse, they will be retested and if suitable may be placed on the liver transplant list at that time. Other patients may be too ill to survive the transplant. In these cases, they are not approved for a liver transplant.

How does the MELD scoring work?

Patients listed for a liver transplant are tested and assigned a Model for End-Stage Liver Disease (MELD) score, which is based on a system designed by UNOS. The MELD score is a numerical scale, ranging from 6 (less ill) to 40 (gravely ill), used for liver transplant candidates. It gives each person a "score" (number) based on how urgently he or she needs a liver transplant within the next three months. Patients with higher scores are given priority for transplants.

The number is calculated by a formula using three routine lab test results:
  • Bilirubin, which measures how effectively the liver excretes bile;
  • INR (prothrombin time), which measures the liver's ability to make blood clotting factors;
  • Creatinine, which measures kidney function. (Impaired kidney function is often associated with severe liver disease).

How long will a new liver last?

No one knows how long a transplanted liver can last. The longest reported survivor is 25 years. Ten year survival is common. Hopefully, improvements in techniques and medications that are continually occurring, will allow most patients receiving liver transplants today to have long productive lives.

What are the overall chances of surviving a liver transplant?

This depends on many factors but overall 80 to 90% of adult patients and 85 to 90 % of children survive and are discharged from the hospital.

Can a patient having a liver disease due to alcohol have a transplant?

Yes. However you must have completely stopped taking alcohol for a minimum period of six months. He will be assessed by a psychologist and a psychiatrist to establish whether his mental, social and family environment may drive him back to alcohol following a successful transplant. Even small amounts of alcohol after a liver transplant can seriously damage the new liver.

Will hepatitis C or Hepatitis B be cured by a liver transplant?

No. Hepatitis C and B viruses can live in cells other than in the liver. Once the old liver is removed and the new one is connected the hepatitis virus spreads back into the liver within the first weeks to months after the transplant. It is almost certain to occur with Hepatitis C. This is the bad news: at present we have no way to make the hepatitis C virus go away completely. The good news is that overall results with hepatitis C after liver transplantation is good because although the disease comes back it can be treated with effective drugs which are better tolerated in the presence of a new liver. Occasionally, it is possible for the hepatitis to return so severely that the new liver fails very soon, but this is uncommon.

Fortunately hepatitis B can be treated very effectively with antiviral medications and hence recurrence of liver disease from Hepatitis B is seldom seen in the last few years.

Where do donated livers come from?

There are two types of donors.
Cadaver donor:

In this case, the donor liver is obtained from a person who is diagnosed as “brain stem dead” and whose family volunteers to donate the organ for transplantation. Cadaveric organ donation from brain stem dead patients remains the principal form of donation in most parts of the world. “Brain stem death” usually result from head injury, stroke, brain haemorrhage etc. Such donors are on a ventilator in a hospital intensive care unit. Although their heart continues to beat and keep their blood circulation going, they are clinically dead. Because the ventilator provides oxygen which keeps the heart beating after death, they are called heart-beating brain stem dead donors. If their breathing support machines were stopped, the heart would stop immediately. Even on a ventilator, the organs which are supported will eventually fail. In these circumstances death is confirmed by brain stem death tests, which are recognized all over the world and by the Indian parliament (Transplantation of the Human organs act, 1994). Whilst their heart is beating on the ventilator, their organs can be removed for transplantation into a recipient.

Living donor:

Recently, living-donor liver transplants have become more common, particularly in Asian countries such as Japan, Korea, Taiwan, Singapore etc where for various reasons, cadaveric donors are very few in number. India too is seeing a rapid increase in the number of living donor liver transplants over the last 5 to 6 years. A healthy family member, usually a parent, sibling, child or spouse may volunteer to donate part of their liver for transplantation. For an adult who needs a liver, the right half of a liver is usually removed from the donor and used for the transplant. For a child who needs a liver, a smaller part of the liver (part of left side) is removed from a living donor for the transplant. The donor is carefully evaluated by the team to make sure no harm will come to the donor.

What is the difference between living donor and deceased donor organ donation?

Deceased donor organ donation

Deceased donor organ donation is donation of an organ or organs after a person dies.

Living donor liver donation

Fortunately, waiting for an organ from a deceased donor isn’t the only option. For many people, living donation is an exciting possibility that enables a person who is still living to share an organ or portion of an organ with a family member, spouse, or a friend.

A healthy liver has the ability to regenerate. This means that through living donation, liver recipients can now receive a piece of a healthy liver from a living donor—a healthy liver can grow back to its normal size in the donor and the recipient.

The benefits of living donation include:
  • Long delays waiting on national lists may be avoided
  • The recipient may be in better health due to reduced time to transplant
  • The donated organ may be healthier than one received from a deceased donor
  • Surgery can be scheduled for a time when both the donor and the recipient are in the best condition possible
Living donation criteria

There are many criteria that must be considered for a person to donate a portion of his or her liver, including age, medical history, and current health status. The potential donor will undergo blood tests, a physical and psychological exam, X-ray tests to evaluate liver size, and a possible liver biopsy.

Before the operation, the surgeons will determine the amount of liver needed for the recipient to receive and the donor to keep. The donor will be in the hospital for approximately 1 week following surgery, with a continued 4 to 6 weeks of rest at home. It is important for the donor to follow up with the surgeon for the first year post-surgery to make sure the liver is operating and growing normally.

If a living-donor transplant is not possible, the recipient will be placed on the waiting list for a deceased donor organ.

Who pays for the costs of transplant and other medications?

For patients undergoing transplant in Govt: hospitals, the government arranges for the medication of the patient and the transplantation is done free of cost. In case of private hospitals the patients, will need to arrange the funds by themselves. The costs of transplant and the medications after are generally high.

How does one get on the state waiting list?

You first decide on the hospital you wish to get the transplant and then ask your coordinator to put you on the wait list after giving a onetime fee through a DD of Rs. 1000/- in favour of “Transplant Authority of Tamil Nadu ”. You will then be registered and be given your wait list number by the Hospital. Registration in Government Hospitals are done free of cost.

How will I get a liver I get on the wait list?

When there is a brain stem dead person in any of the participating hospitals, whose organs are donated, the organs are allocated to persons in the wait list. If your name comes up on the list as per the wait list number, your coordinator will inform you about the possibility and you will be called to the hospital for the transplant.

How does the waiting list work?

The Transplant Authority of Tamil Nadu (TRANSTAN) office manages the liver transplant waiting list. A patient who wants a deceased donor liver is evaluated by his hospital. If a patient is healthy enough for a transplant, his/her details are added to the list, after a onetime fee of Rs. 1000/- is sent as a DD to the TRANSTAN office. In case you register with a government hospital then you need not pay this amount.

When a donor becomes available, the hospital is notified of the blood group of the donor and his liver status. If the blood group matches with the donor’s and if the recipient is next in line as per the waiting list, the hospital alerts the patient and if the patient qualifies for the transplant then the liver is allocated to the patient.

How long is the average wait for a liver on the waiting list?

It depends on the number of patients on the wait list at that moment of time. Because of the lack of livers, this waiting time may increase. Unfortunately, the number of people waiting for a liver transplant is growing faster than the number of organs available. The length of time on the list depends on the severity of the liver disease. Because of the MELD scoring process, sicker liver patients don't have to wait as long. If you want to get a liver from a deceased donor, the most important thing to do is to get on the list as soon as possible. Another way to decrease your waiting time is to explore living donor transplants.

How is waiting list status determined?

The status of a person awaiting a transplant organ is determined by such factors as severity of disease (as determined by your MELD score) and time on the waiting list. When a donor organ becomes available, the people for whom that organ is a perfect match are identified, and the organ is offered to the patient who has the most urgent need for the organ, based on his or her current health status. Therefore, the sickest people receive organs before those whose health status will allow them to wait longer for their transplants.

Is the waiting list fair?

Strict rules and Government G.O’s have been set up, to make sure that everyone has an equal chance of receiving a liver from the waiting list. Your income, caste or creed does not prevent you from receiving a liver, nor do they move you up/down on the list.

Do the patients have to take the medicines forever?

To prevent rejection of the new liver, patients usually stay on the medications as long as the transplant is still functioning.

Can the patient travel while he/she is on the waiting list?

Yes, under most circumstances. It is best to consult with the transplant coordinator prior to making travel arrangements.

Do the patients have to go the chosen Hospital to do all their testing?

The chosen Hospital generally requires the liver transplant patients to get most of their testing done at their hospital.

How far away from the can the patients live?

Usually, there are no restrictions on where patients waiting for a liver can live, but they must have arrangements made so they can arrive at the hospital within a few hours.

What happens when a patient is placed on the waiting list for a transplant?

Once a suitable donor is found, the patient will be contacted instantly and he/she will need to reach the hospital at the earliest. Therefore ensure to be available on the telephone numbers given to the hospital.

There are many problems that may come up during the waiting period. The patient may need to be seen by the doctor regularly. Blood tests have to be done and medicines changed as necessary to keep the patient in the best possible shape for a transplant. It is very important all appointments are kept.

What is TIPSS?

TIPSS is an acronym for transjugular intrahepatic portosystemic shunt. This shunt creates an artificial channel in the liver that connects the portal vein to a hepatic vein. TIPSS is used to help treat portal hypertension (elevated pressure in the liver), a complication that occurs as a result of scarring, and to reduce the risk of haemorrhage (bleeding) and/or fluid accumulation in the abdomen. TIPS is commonly used as a "bridge to transplant" to help keep patients healthy while they wait for liver transplantation.

How is liver transplantation done?

  • The recipient is prepared for the transplant surgery in the operating room or holding area
  • The recipient will receive anaesthesia to make him or her sleep
  • Once the recipient is asleep and the preparation is done, the surgeon will begin the operation to remove the diseased liver.

During the removal of the recipient’s liver, one of the other surgeons will check and prepare the new liver for the transplant. Once prepared, the new liver will be put in place:

  • The blood vessels will be sewn together, and the bile duct of the donor liver will be sewn to the bile duct of the recipient
  • The abdomen will be closed using special stitches, some of which will dissolve over time
  • The recipient is taken directly to the intensive care unit, where the staff will monitor his or her vital signs very closely. It may be at least an hour before family members will be able to see the patient after surgery

Does the size of the liver matter?

Organ size (which can be affected by gender and weight of donor) is critical in matching a donor liver with a recipient. It is important that the surgeon ensure that the new liver will fit into the abdomen without pressing against or Interfering with other organs and structures in the area.

How long will the patient be in hospital after the transplant operation?

Liver transplant is a major operation taking about 6 to 12 hours to perform. Following the surgery the patient will be in the transplant intensive care unit for about 3 to 5 days and in the ward for 2 to 3 weeks. There will be intensive monitoring of liver, kidney, heart function etc during this period.

What are the most common complications following a liver transplant?

The two most common complications following your liver transplant are Rejection and Infection. These complications are most common in the first year following your transplant.

Rejection:

The body’s immune system is designed to destroy foreign cells such as bacteria and viruses, which are harmful to a person. The immune system attacks the cells of the new liver because they’re different from the body’s own cells. This attack is called "rejection” To prevent rejection of the new liver, one needs to take anti-rejection medicines called “immunosuppressants” and it has to be continued lifelong. Initially the number and dose of this medication would be high and will be gradually reduced over time.

Approximately 50% of liver transplant recipients experience at least one episode of rejection. Usually this rejection episode resolves completely with treatment. If one does not take the prescribed medication properly as instructed, then the chances for rejection are higher.

Infection :

Micro organisms called bacteria, viruses, protozoa and fungi cause infections. Because of taking immunosuppressive medications that suppress your immune system, the patient will be at risk of acquiring infections from these micro organisms. Some of these organisms live normally in the body and do not produce illness before the transplant. Once transplanted and the immune system is suppressed, these organisms could trigger infections. Hence monitoring for infection is extremely important for the newly transplanted patient.

Talk to the transplant team immediately if any of the following signs or symptoms of rejection or infection are experienced:
  • Fever over 100°F (38°C)
  • Flu-like symptoms such as chills, nausea, vomiting, diarrhea, tiredness, headache, dizziness, or body aches and pains
  • Coughing up yellow or green mucus
  • A dry cough that lasts for more than 1 week
  • Severe diarrhea
  • A burning feeling when you urinate
  • Vaginal discharge or itching
  • A wound that oozes fluid, does not heal, or feels warm
  • Swelling, warmth, redness, pain, or tenderness of an arm or leg
  • Pain or tenderness over your transplant site
  • Change in pulse rate
  • Yellow colour to the skin or eyes
  • Light-coloured or blackened stools
  • Change in the colour or smell of urine

What are the side effects of the anti rejection medicines?

Soon after a liver transplant, anti rejection pills are given. These medicines weaken the immunity just enough so the body accepts the new liver. They are very strong medicines but without them the new liver will not function.

As explained above, the main side effect of these medicines is infection. Therefore drugs will be given to prevent acquiring viral, fungal and protozoa infections. Any infections will be treated accordingly as recommended by the transplant team.

The other side effects are:
  • Transplant medicines can make the patient more likely to get some type of cancers like cancer of lymph glands and skin. The doctors will try to adjust the dose of the medicines so that one does not get infections or cancers.
  • Furthermore, the patient will be regularly checked for the development of cancers. Most of these cancers are easily treated, if detected early.
  • Diabetes, high blood pressure, weight gain, high cholesterol, weak bones, hair thinning etc are other relatively minor side effects. These can be detected early and appropriate treatment started to prevent any major issues.

What happens after discharge?

The patient will need to attend the outpatient department regularly for check-up by the doctor and for testing blood. Initially a visit 2- 3 times a week; later once a week and then less often. The better the patient looks after the new liver, the longer it will last and the lesser the side effects of medications.

What will be the physical activity level post-transplant?

In the days immediately following the transplant, one can expect to be tired and may be still feeling a little sick. Transplantation is a major surgery. However, the patient will begin to feel better and stronger each day—and may be encouraged to resume physical activity, including work. Exercise according to the transplant team’s instructions, generally at least 5 days a week. Start with something simple, like walking. Increase the time and pace slowly to reach a minimum of 30 minutes a day. It is best to pace oneself so that one doesn't feel rushed or overtired. The transplant team will help plan a proper exercise program.

What about sexual activity?

As with other physical activities, sexual activity may be resumed.

Is it safe for women to become pregnant after transplantation?

Studies have shown that women who undergo liver transplantation can conceive and give birth normally, although they have to be monitored carefully because of a higher incidence of premature births. A period of about 2 years after transplant should be allowed before pregnancy. This allows for stabilisation of the liver function and medications. Prior to planning pregnancy, the transplant team should be consulted as some medications may interfere with pregnancy and may have to be stopped. It is better to undergo antenatal, delivery and post natal care at the same hospital where the transplant was done or in a hospital which have specialists dealing with transplant patients. Close monitoring of the liver function is required during the entire period.

Mothers are advised against nursing babies because of the possibility of immunosuppressive drugs being ingested by the infants through breast milk.

Do recipients of liver transplant need to keep a diet?

Transplant patients have a tendency to gain weight because of the increased feeling of well being after transplant, increased appetite and as a side effect of the medications. It is important for patients to maintain a balanced diet. Hygienic and cooked food should be consumed, as food is sometimes a common source of infection.

If a transplanted liver fails to function, or is rejected, what can be done?

There are varying degrees of failure of the liver, and even with imperfect function, the patient will remain quite well. Occasionally, when circumstances and time permit, a failing transplanted liver can be replaced by a second (or even third) transplant. Unfortunately, there is no dialysis treatment for livers as is possible with kidneys. Researchers are experimenting with devices to keep patients with failing livers alive while waiting for a new liver.

What are Split Liver transplants?

Livers from young donors may be split into two pieces that are transplanted into two recipients.