Resuming your life after transplant

  • Quality of life : Most patients are able to lead a comfortable and healthy life. After transplant they return to work and enjoy an excellent quality of life.
  • Work/sports : Most people can return to their normal daily activities, 2-3 months after surgery. Children can resume schooling after 3 months. Playing sports and getting healthy exercise is possible after 3 months although it is advisable to avoid contact sports such as boxing, karate, rock climbing etc. for 6 months. It may take longer for patients who are very sick before the transplant. Initial family support is very crucial to lead an active and productive life in the long term.
  • Driving/travelling : Most patients resume driving in about 2 months after a transplant. It is recommended that patients should not drive themselves after taking pain medications as they may contain narcotics. If the seat belt rubs against the wound and bothers, one can place a towel between the abdomen and the seat belt. Most patients can undertake occasional train / plane travel in 2 – 3 months. If one is travelling to another city or country, discuss the trip with the transplant team to make sure that the patient carries enough supply of medications and is put in touch with a doctor locally who can take care of urgent problems.
  • Sexual activity / pregnancy / breast-feeding : There are no restrictions on sexual activity and these may be resumed when one feels comfortable. Donors can resume sexual activity in a month, and recipients in 2-3 months. Women should not conceive for up to 6 months after donation and 12 months after transplantation. For recipients, use of oral contraceptives and hormones should be done in consultation with the hepatologist and gynaecologist. Recipients who are planning to conceive should discuss the same with the transplant team as some medicines may have damaging effects on the child or may be passed into breast milk causing problems in nursing babies. Some medicines might have to be stopped or changed before pregnancy.
  • Dental care : The patient should see the dentist every 6 months and the dentist should be told about the transplant, as you might have to take antibiotics before any dental procedure.
  • Follow-up: e-mail and visits : Once discharged donor/patient, should perform regular tests as per given schedule and e-mail their reports in the format given by the transplant coordinator. Patients have to visit the hospital for follow-ups as per schedule given and these should be accompanied with detailed tests.

Possible complications after liver transplant.

Doctors and coordinators from the transplant team discuss various possible complications and risks of transplant before surgery, although it is important to remember that very few patients experience any of them. Most of these problems can be diagnosed easily and treated in time.

Complications after liver transplant may occur early (within 1 month) or late. Some early complications patients may experience are

  • Bleeding: Patients may have bleeding after the operation, which can be controlled with medicines and blood products, but may rarely require re-opening of the abdomen to stop the bleeding.
  • Primary non-function : Rarely the transplanted liver may not work well called as primary non-function. It is more common in deceased donor transplantation and may require an emergency re-transplantation.
  • Thrombosis : A blood clot in an important blood vessel of the liver (hepatic artery, portal vein or hepatic veins) is a serious problem and may require an urgent CT scan, angiography, liver angioplasty, or re-operation to remove the clot or even re-transplantation.
  • Bile Leak : Bile may leak from the anastamosis (joint) of the bile duct or cut edge requiring further tests. It may either resolve spontaneously in a few weeks, or may require putting a stent in the bile duct by endoscopy or by a radiologist. Another operation to fix the leak is uncommonly required.
  • Post-operative infections : can usually be identified and treated effectively with antibiotics, anti-fungals and antiviral drugs depending on the type of infection. Immunosuppressant drugs reduce patient’s resistance to infection and make infections harder to treat, especially if the infecting organism is resistant to antibiotics or if patients are weak. CMV (cytomegalovirus) infection is common in transplant patients. The risk of infection becomes less as the requirement for anti-rejection medicines reduce over time. If there is a white coating on the tongue, the transplant team should be informed as it may be a fungal infection known as oral thrush. Women are more prone to vaginal yeast infection.
  • Rejection : is patient’s immune system’s attempt to mount a response against the newly transplanted liver as the donor liver always retains its original immunological identity, which is different from that of the patient. It is prevented by taking anti-rejection immunosuppressive medicines. If these are not taken, even many years after the transplant, rejection may happen; therefore they have to be taken life-long. Rejection does not always make one feel ill or have any symptoms and is commonly diagnosed through blood tests or a liver biopsy. Mild rejection is common, especially in the first few months, however it does not mean that one is losing the liver, like it is commonly perceived, it is not a serious problem because it can be treated and reversed with higher doses of anti-rejection medicines and steroids and does not cause loss of liver function in the long term.

Some patients may experience complications few months after surgery.

  • Biliary Stricture : In few patients, a stricture (blockage) may form in the bile duct, which can be diagnosed using a type of MRI called MRCP and may require opening up the blockage and putting a stent in the bile duct either endoscopically or by a radiologist. Very uncommonly another operation may be required where the bile duct is joined directly to the intestine.
  • High blood sugar (diabetes) : Patient may temporarily become diabetic following transplantation, because of new medications. However, in most cases it recovers over few weeks to months, hence monitoring and regulating sugar intake is important.
  • High blood pressure (hypertension) :  is more common and generally requires medical treatment.
  • High cholesterol and weight gain : Some medicines prescribed after the transplant may cause one to gain weight, or raise cholesterol levels. Diet control and regular exercise can help counter these effects, although cholesterol lowering medications may be required in some patients.
  • Brittle bones (Osteoporosis) : The use of steroids in the long term can cause thinning of bones, especially in women and patients with primay biliary cirrhosis (PBC). Calcium supplementation and regular exercise are important to contain damage to the bones.
  • Cancer : Anti-rejection medicines weaken immune system and make patients more susceptible to certain kinds of cancers. Higher likelihood of skin cancer in those patients with significant sun exposure. Use of sun-blocks prevents skin cancer. Avoid smoking or tobacco use because the risk of throat or lung cancer from these habits increases manifold after transplant. Yearly cancer screening for cancer prevention helps too.
  • Disease recurrence : Certain liver diseases can recur in the transplanted liver especially viral hepatitis (HBV and HCV). However, most of these cases can be effectively treated with anti-viral drugs. Liver cancer may recur after transplant, the risk of recurrence depends on the size and number of tumors and involvement of small blood vessels on biopsy.

Disease specific out come after transplant

Depending on the cause of liver disease, the experience may differ for patients.

Hepatitis C (HCV): Although liver transplant cures cirrhosis of the liver, HCV infection remains in blood and other organs in the body and can infect the new liver as well. With the newer oral medications available , HCV infection is generally treated a few months after transplant with good success rate. Only 30 % of them may need treatment for HCV after transplant.

Hepatitis B (HBV) : Current medical treatment for HBV allows us to control HBV infection in almost all patients before transplant, thus the chances of re-infection in the new liver is low.

Alcoholic liver disease : Patients with alcoholic liver disease are offered transplantation only if they are committed to abstinence from alcohol for the rest of their lives, for which at least 3 months of abstinence period before transplant is required, unless they have a life-threatening problem and can not wait. This is because even small amounts of alcohol use after transplant can not only damage the graft but negate all efforts that go into the transplant.

Hepato-pulmonary syndrome (HPS) : Patients who undergo liver transplant because of HPS generally are unable to maintain oxygen levels in their body because of microscopic shunts in lungs. These shunts close down after transplant in a few weeks to months. HPS patients may require more duration in the ICU or hospital and may continue to need oxygen therapy for a few months after transplant.

What is the role of stem cell therapy or hepatocyte transplant in liver failure?
Stem cell therapy or hepatotocyte transplantation holds promise for future as an alternative to liver transplant. However, they are currently at an experimental stage and may be offered only as a part of clinical trial. From the research done so far, it is clear that these therapies may be more suitable for certain group of patients such as children with metabolic diseases and patients with acute liver failure. The protocols for such therapies have not been standardized and they are not approved for clinical use by the FDA (Food and Drug Authority).

Will my gall bladder be removed at the time of liver donation / transplant?
Yes, gall bladder is closely attached to the undersurface of the liver and it is a standard step to remove the gall bladder during any liver surgery and it will be removed during both the donor and recipient surgeries along with the liver. The gall bladder is a storage organ for bile, which temporarily stores bile, which is formed by the liver. After removal of gall bladder, bile formed by the liver directly goes into the intestine for digestion. Removal of gall bladder does not harm in any way nor influence digestion as is commonly perceived. This fact is very well studied from thousands of gall bladder removal surgeries done every day to treat gall bladder stones.

What kind of matching is required between the patient and donor for liver transplant? Is same blood group donor better than compatible blood group donor?
Fortunately, liver is a very sturdy organ and is relatively privileged because the immune system does not mount a strong reaction against it. If the donor has compatible blood group they can be accepted for transplant. Rejection if it happens is generally mild. HLA testing and tissue cross match is not required (as is done for kidney and some other transplants), however, HLA testing maybe required for legally establishing relationship between blood relatives.

What is the success rate of liver transplant?
All donors are expected to recover well after the surgery. However, it is a complex major surgery with a very small risk. Recipient success hugely depends on their pre-operative sickness. Patients who are stable and active and have less severe liver disease are expected to have better outcomes compared to very sick patients who are in the ICU on ventilator requiring support. Overall, 90 – 95% success can be expected depending on severity of liver disease.

After transplant / liver donation, when can I occasionally take alcohol?
No, patients cannot have alcohol in any form in any quantity at any time after transplant because even a small amount of alcohol can cause significant damage to the transplanted liver. Donors may be able to drink alcohol socially 1 – 2 years after transplant.

Is it more difficult to do a transplant in a child?
Yes it is because the minute blood vessels in them are difficult to join, their post-operative care can be done only by doctors trained and experienced in pediatric critical care and transplantation and there are few of them available.

How many years will my transplanted liver last?
The new liver will last you a life-time if you take good care of it. Regular tests and follow-up with the transplant team and medicines as prescribed are the most important things to enjoy good health and normal lifestyle after transplant.

What is the law about transplant in India? What is the procedure for cadaver donation? Can the hospital arrange a living donor if I pay money?
The Transplantation of Human Organs Act, 1994 lays down the definition of ‘brain-stem death’ (commonly called as ‘cadaver’). Once brain-stem death is diagnosed by authorised doctors using specified criteria, the family may donate the organs for transplantation to save lives of many patients with end stage organ failure.

The law has laid down the procedure to be followed for living related transplantation and imposed very stringent penalties for any violation of the act or organ trading. Every case of living donor transplantation has to be reviewed and approved by the government appointed authorization committee before transplantation. For any living donor transplantation, the donor has to be a family member of the patient and cannot be allowed to donate by paying money. The law has been an effective step by the government in curbing illegal unrelated transplantation.

Where can I get more information about liver transplant?
You can call on duty and coordinators (number are given on page no. _________)

The best source of information are transplant coordinators and patients who have undergone a transplant in the past. One can search the web for information available. Most websites hosted by governments are reliable such as UNOS (United Network for Organ Sharing), Europeon Liver Transplant Registry (ELTR). Liver disease scoring systems such as MELD and CTP are available as online calculators. Information on some other websites, chat groups or blogs may be misleading and not always give true information. Patients are advised to check the information collected with the transplant team and ask questions whenever in doubt.

What are the Indications of liver transplantation in children and adolescents? 
Indications for liver transplantation are:

Liver failure

Chronic Liver Failure

  • Cholestasis: Biliary atresia, progressive fulminant intrahepatic cholestasis, Alagille’s, neonatal hepatitis
  • Metabolic:
    • Wilson’s disease, Galactosemia, Hereditary Fructose Intolerance,
    • Tryrosinaemia, 1 Anti trypsin, Bile acid disorders,Storage
    • Disorders – Glycogen storage disorders
    • Chronic hepatitis:  Hepatitis B & C, Auto Immune disease
    • Non alcoholic fatty liver disease (NAFLD)

Acute Liver Failure

  • Fulminant hepatitis : Viral hepatitis (A,E,B,C  others), Autoimmune hepatitis, Drugs and poisoning ( including paracetamol poisoning)
  • Metabolic liver disease: Tyrosinemia, Wilson’s disease, fatty acid oxidation defects, neonatal hemochromatosis, Galactosemia

Inborn Errors of Metabolism

  • Criggler-Najjar syndrome type-1
  • Organic acidemias
  • Urea cycle defects like maple syrup urine disease (MSUD)
  • Primary oxalosis,

Hepatic Tumors

  • Benign tumors that have replaced the whole liver
  • Unresectable malignant, without extrahepatic metastasis
  • Certain rare condition such as factor VII deficiency, Protein C & protein S deficiency
  • Common indications in children are cholestatic liver disease , mostly biliary atresia ,  metabolic liver disease and  acute liver failure.

Who Needs a Liver Transplant?
The primary indication for OLT are the symptoms of end-stage liver disease and the prognosis is assessed by Child Pugh score , MELD Score (> 12 yrs) ,PELD Score (<12yrs)  .Consider OLT early in patients who do not achieve clearing of jaundice by 3 months, following Kasai in patients with extrahepatic biliary atresia . OLT as the primary treatment for biliary atresia may be indicated only for patients > 120days  of age with an enlarged hard liver and decompensated cirrhosis.  Also if the quality of life in form of number of days spent in hospitalization, limitation of day to day activities and wellbeing is affected because of liver disease, that in itself is an indication for Liver transplant.  Growth retardation due to underlying liver disease is another indication of liver transplant.

What Does Pre Transplant Evaluation Include? 
Besides the patient evaluation for liver transplantation as mentioned in the previous section, the pre transplant evaluation in a pediatric liver transplant includes the following issues:

Immunizations Pre-transplantation

Most units including ours consider live vaccines to be contraindicated after liver transplant because of the risk of dissemination secondary to immunosuppression.  It is therefore better to complete normal immunizations before transplant.  These include – BCG, DPT + Hib, Hepatitis B, Measles, MMR.  It’s suggested to give even optional vaccine such as Hepatitis A, Typhoid, chickenpox, influenza rotavirus and pneumococcal vaccines. The vaccination schedule may be expedited and may differ from the normal recommendations. Our target is to especially complete the live vaccination prior to transplant. Following live vaccination, liver transplant surgery is deferred  by 2-3 weeks.

In acute liver failure scenario the doctor does not have time to look into this issue as  the need for liver transplant is on an urgent basis. However, killed vaccines like Tetanus, Hepatitis B vaccines are especially given if need be .

Management of Hepatic Complications

It is important to ensure that specific hepatic complications are appropriately managed while the patient waits for transplant.  These include portal hypertension, oesophageal varices, ascites, hypoproteinemia etc.

Nutritional Support

It has been demonstrated in several studies that nutritional status at liver transplant is an important prognostic factor in survival i.e. better outcome is seen in patients with good nutritional status.   The patient needs to be on a high calorie diet (150- 200% calories good protein intake) with two times the RDA of multi vitamins and in patients with cholestasis supplementation with fat soluble vitamins like vitamin A,D,E,K is done.  In patients with cholestasis MCT oil as in coconut oil is used for cooking.  If a child is not able to feed well orally then tube feed supplementation is done, which could be for overnight feeds or during the day as per the need.

Efforts are made especially in small babies to improve their nutrition and weight, however, occasionally despite good calorie intake one is not able to achieve improvement in weight , in that scenario the doctor may decide to proceed for liver transplant even at a low weight .Thus the decision of timing of liver transplantation  will need to be individualized to  patient.

How Many Units of Bloods and Other Products to be  Arranged for Liver Transplant Surgery?
Number of units of blood and blood products to be arranged for a child are less than what we need for adults. On an average 4-6 units each of packed cells, FFP and 1-2 units of platelet apheresis are arranged.

How to increase the donor pool for Liver transplant in children?
The donor pool can be increased  for pediatric liver transplant cases by using Split livers i.e. a single deceased (cadaveric) donor liver is divided into right and left portions that are implanted into two recipients simultaneously usually the right lobe in adults and left /left lateral lobe is given to children  . ABO Incompatible donors may occasionally be used in   children as the antibodies are not formed in young age  so, the chances of rejection are less. In ABO incompatible liver transplants usually few sessions of plasmapheresis are carried out in the patient a week  prior to the transplant and the cost of transplant would accordingly increase.  Another option of increasing the donor pool. is Swap donor which means when the same blood group donors are not available, the donors of 2 different patients with similar problem donate to each other. In a paired donor exchange, also known as a liver swap, two liver recipients essentially “swap” willing donors. While medically eligible to donate, each donor has an incompatible blood type or antigens to his or her intended recipient. By agreeing to exchange recipients—giving the liver to an unknown, but compatible individual—the donors can provide two patients with healthy livers where previously no transplant would have been possible.

Is liver transplant surgery in children technically more difficult?
Yes, liver transplant is children is technically more difficult and requires much more expertiseas the blood vessels and bile duct in a child and especially whose weight is < 10 kg are very small.  Also majority of pediatric patients being post Kasai ( post biliary atresia surgery) , chances of adhesions are much more inside which make it all the more difficult to operate for surgeons.
Is the anaesthetic care during surgery in children different  from adults?
Yes , the anesthetic care in children is also different as the lung volumes are less  and chances of intraop bleeds due to adhesions inside are much more which need to managed and at the same time volume overload has to be avoided. There is relatively a narrow margin as compared to adults.  Anesthetist experienced  in pediatric care are ideal

How does post transplant care different in children?
Post transplant care of pediatric patients have to be by specialized pediatric intensivists and nurses trained in pediatric intensive care. Post transplant pediatric patients in addition to the  care needed for adults, may sometimes require prolonged ventilation, and ICU stay. Also as   a lot of  patients have Roux en Y surgery for bile ducts, so feeds are delayed till around 3rd day postop . Their need for analgesia is also a bit higher. They also require regular chest physiotherapy, else lungs would develop collapse consolidation .Physiotherapy in small babies and children requires experts.

What about medicines post liver transplant ? 
To make the baby comfortable  we like to use music, TV with– child friendly programmes and toys which can be washed cleaned by  sterilium.  Stuffed toys are to be avoided.

Immunosuppression: Following liver transplant the patient requires immunosuppression usually for life long (according to the present consensus).  There are 3 drugs, tacrolimus, mycophenolate mofetil and steroids. Steroids are discontinued first followed by mycophenolate mofetil. Thereafter patient is on 1 immunosuppressive drug, usually tacrolimus, which needs to be taken twice a day daily.

The caretaker must ensure that regular blood tests are done to monitor the liver functions, kidney functions and immunosuppressive drug levels as advised by the doctor. After the initial couple of years the frequency of testing may be reduced to once in a quarter of a year.

What’s Life After Liver Transplantation in a child or adolescent ? 
Children who survive liver transplant will usually achieve a normal lifestyle despite the necessity for continuous  monitoring of immunosuppressive drug levels. They attend normal school sports, activities etc.

Most children are able to resume after 3 months of transplant and sports after 3-6 months of transplant.

Most studies from large paediatric liver transplant centres show a patient survival of 90% at 1 yr and > 85% at or beyond 10 yrs. usually there are no significant issues related to mortality after this.  Patients usually lead a normal life.  There are patients who have been operated as children / adolescents and have also produced children.  Patients take part in sports, normal activities and there are examples of children who’ve climbed mountain peaks.

However, regular follow up with doctor is a must to monitor the organ functions and side effects of immunosuppression. Occasionally adolescents may defer from their normal routine of medication and in such a scenario, it is very important to have the adolescent counselled from the doctor.