Discharge from the hospital
While the patient recovers from the operation, the family should take the opportunity to learn about precautions to be taken after discharge, understand the schedule for testing and follow-up appointments, become familiar with medicines, learn about symptoms and signs of potential problems, and understand the mechanism used to contact the liver transplant team round the clock in case of urgent problems.
At the time of discharge, patients will receive a discharge summary with detailed instructions about testing, and a medication schedule, which should be discussed with the transplant coordinator. Patients also receive a copy of the investigation chart, and a blood sugar and blood pressure monitoring chart, which they should be familiar with and learn how to fill.
After discharge, patients are required to undergo tests and visit the post-transplant clinic every 5-7 days. They should therefore stay in the vicinity of the hospital for 4-6 weeks after discharge. The house where the patient would be staying after discharge should be prepared best to prevent incidence of infections.
- The house should be thoroughly cleaned with disinfectants
- The accommodation should be close to the hospital with available transportation 24 hrs a day. There should not be too many stairs, and the locality should be neat and clean
- Patients are encouraged to walk and avoid using the wheel chair
- The number of visitors should be restricted for a few weeks
- Patients should avoid meeting people who are ill and report any illness/fever/flu/cold persistent cough/ pain in abdomen/ loose motions or transmissible infections or infectious diseases such as influenza, pneumonia, chicken pox, hepatitis etc.
- Patients should avoid contact with any animals and birds
- For the first 3 months, patients are advised to wear a mask and avoid crowded places like malls, cinemas, restaurants, department stores, etc. After this, patients can resume their regular social calendars.
Personal hygiene and wound care
- Frequent hand washing with soap, especially before eating, and hand washing with antiseptic solution after using the bathroom should be practiced by all living in the house.
- Oral hygiene should be maintained by brushing teeth daily, and rinsing mouth after eating
- Finger nails should be trimmed
- After discharge, dressing might need change 2-3 times a week
- Few donors/patients may be discharged with a drain tube in the abdomen, which is removed few days after discharge
- While one has wound dressings and drain bags, the body should be cleaned with a wet towel only. Only freshly washed clothes should be worn daily
- Once the wound heals, and bags are removed patients/ donors can use waterproof dressings, and bathe normally before every dressing or dressing change
- Donor stitches/ staples are generally removed within 2-3 weeks and recipients within 3-4 weeks unless absorbable stiches,which do not need removal, are used
- Once the staples are removed, the incision should be kept clean and dry. Patients/donors can bathe normally
- If the incision oozes some fluid or if the dressing nurse says that there is some infection in the wound, please insist that the nurse speaks to the transplant team immediately. Note that the dressing nurses are trained to evaluate the condition of the wound, decide the frequency of dressing changes and timing of staples/ stitches removal, in consultation with the doctor.
Diet and Nutrition
Patients may suffer a loss of appetite after surgery. The appetite slowly improves with time. It is important, however, to follow a high protein diet to facilitate wound healing and liver regeneration. If necessary, the dietician will advise supplements in diet. If patients prefer a certain type of meal or cuisine, they should check with the dietician.
Food – how to prepare /consume
- Food should be cooked hygienically
- Wash utensils well before cooking
- Wash and cook in clean water
- Use boiled/ filtered water
- Drink plenty of liquids; intake is not restricted, as before transplant
- Salt restriction is not necessary unless one has high blood pressure
- Eat plenty of fresh fruits and green leafy vegetables after washing well and peeling off their skin
- Consume a balanced, low-fat, high protein diet
- Eat foods rich in calcium, such as skimmed milk, cheese, soya, eggs, chicken, fish
- In a few weeks, patients can followthe diet they did before the transplant
Food to avoid
- Avoid deep fried or greasy foods
- Do not eat leftover food
- Avoid raw eggs or mayonnaise
- Avoid partially cooked food
- Avoid red meat
- Avoid overripe fruits
- Do not consume expired packaged foods
- If potassium is high, avoid foods such as banana , coconut water, fruit juices/pulp
- If blood sugar is high, avoid sweets and fruits such as mangoes
Activity and exercise
- At the time of discharge, patients are generally allowed active walking and routine activities like bending and climbing stairs. Regular exercise increases energy levels, strengthens muscles, and makes the patient feel more active
- It is common to experience weakness and mild abdominal discomfort at the site of the operation, especially with movements for the first few weeks to months after transplant. Do not postpone exercising because of this. The transplant team should be contacted if the patient has severe discomfort with movements.
- Perform deep breathing exercise to expand lungs and help cough out sputum
- The physiotherapist will teach limb exercises, so that limb muscles are strengthened, blood circulation is increased, and the risk of complications such as venous thrombosis is reduced
- Speak to transplant physiotherapists to progressively increase the level of exercise and optimize the exercise schedule
- Take adequate rest and sleep
- Avoid lifting heavy weights (>5kgs), including babies, or performing abdominal exercises, including abdominal exercises, weight training and swimming.
Tests and appointments
Being regular with follow-up tests and hospital visits are very important in making the transplant a success.
- Donors need to follow-up every 5-7 days for the first 1 month, after which they will have to get tested and reviewed after 3 months, and after 1 year.
- Recipients need life-long follow-up, very frequently initially, and less often later, as per the schedule given at discharge. Once the reports become stable and medicines well adjusted, patients can travel, e-mail their reports to the doctor and visit the clinic once in every 3-6 months
- In case of problems, please call the transplant team. Please identify a local physician or gastroenterologist for an urgent situation
- Routine monitoring of blood pressure, blood sugar, diet intake, exercise, insulin administration, and other parameters are advised at discharge. Post-transplant co-ordinators will teach the patient and the donors the same, which should preferably be performed by a family member. Maintain a file and keep charts of all lab reports in chronological order, and the dose of immunosuppressant taken, and carry the file during clinic visits
- In case patients need dressing changes, physiotherapy or administration of injections at home, the family should make arrangements for a nurse or physiotherapist.
At the time of discharge, patients are generally prescribed 10-15 medicines. Some of these may be injections. As they make progress, the number of drugs is reduced. After about 1 year most patients need only 1-2 anti-rejection medicines, besides those for pre-existing illnesses. Patients and their families should familiarize themselves with the medicines prescribed and ensure that patients consume the prescribed medication.
LIFE AFTER THE TRANSPLANT
Resuming 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: A majority of people can return to their normal daily activities, 2-3 months after surgery. Children can resume schooling after 3 months. Playing sports and exercising frequently 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: One can 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, 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 the patient is travelling to another city or country, he/she should 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 within 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. The dentist should be told about the transplant because patients might have to take antibiotics before any dental procedure.
Possible complications after liver transplant
Doctors and coordinators from the transplant team discuss various possible complications and risks of transplant before surgery, though very few patients experience any of them. Most of these problems can be diagnosed easily and treated in time. Complications after liver transplants may occur early (within 1 month) or late. Some complications patients may experience are
- Bleeding: Patients may suffer 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-functions: In rare cases, the transplanted liver may not work well, which is called 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, re-operation to remove the clot or even re-transplantation.
- Bile Leak: Bile may leak from the anastomosis (joint) of the bile duct or cut edge, requiring further tests. It may either resolve spontaneously in a few weeks, or may require the fixing of a stent in the bile duct by endoscopy or by a radiologist.
- Post-operative infections: These can usually be identified and treated effectively with antibiotics, anti-fungals and antiviral drugs. Immunosuppressant drugs reduce the patient’s resistance to infection, and make infections harder to treat, especially if the infecting organism is resistant to antibiotics or if the patient is 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 because it may be a fungal infection known as oral thrush. Women are more prone to vaginal yeast infection.
- Rejection: Rejection can be prevented by taking anti-rejection immunosuppressive medicines. If these are not taken, even many years after the transplant, rejection may occur. Therefore, these drugs must be taken for the rest of the patient’s life. Rejection does not always make one feel ill or have any symptoms, and is commonly diagnosed through blood test 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. 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 some of the following complications a 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. Thiscan be resolved by opening up the blockage and putting a stent in the bile duct either endoscopic ally or by a radiologist. Another operation may be required where the bile duct is joined directly to the intestine though rarely.
- High blood sugar (diabetes): Patients may temporarily become diabetic following transplantation because of new medications. In most cases, however,they recover over few weeks to months. Monitoring and regulating sugar intake during this time period is important.
- High blood pressure (hypertension): This could also occur, and would require medical attention.
- 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, though some patients may have to take cholesterol lowering medications.
- Brittle Bones (Osteoporosis): The use of steroids in the long term can cause thinning bones, especially in women and patients with primary 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. There is higher likelihood of skin cancer in those patients with significant sun exposure. The use of sun-blocks prevents skin cancer. Avoid smoking or consuming tobacco 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 liverespecially viral hepatitis (HBV and HCV). Most of these cases, however, 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 tumours, and involvement of small blood vessels on biopsy.
(FREQUENTLY ASKED QUESTIONS)
What is the role of stem cell therapy or hepatocyte transplant in liver failure?
Stem cell therapy or hepatocyte transplantation holds future promise as an alternative to liver transplant. They are currently at an experimental stage and may be more suitable for certain groups of 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 standardised, and they are not approved for clinical use by the FDA.
Will my gall bladder be removed at the time of liver donation/transplant?
Yes.The gall bladder is closely attached to the under surface of the liver. It is a standard step to remove the gall bladder during any liver surgery. It will be removed during both the donor and recipient surgeries, along with the liver. The gall bladder is a storage organ for the 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 or influence digestion as is commonly perceived. This 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, the liver is a sturdy organ and is relatively privileged because the immune system does not mount a strong reaction against it. If the donor has a compatible blood group, he or she can be accepted for transplant. HLA testing and tissue cross match is not required (as is done for kidney and some other transplants), however, HLA testing may be 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. The transplant is a major, complex surgery, but with a very small risk. Recipient success hugely depends on their pre-operative sickness. Patients who are stable, active and have less severe 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. So please steer clear of alcohol. Donors may be able to drink alcohol socially 1-2 years after transplant depending on their condition and with the consent of their physician.
Is it more difficult to perform a transplant involving a child?
Yes. This is because the minute blood vessels in them are difficult to join. Their post-operative care can be managed only by doctors trained and experienced in paediatric critical care and transplantation, who are few in numbers
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 for transplant in India? What is the procedure for deceased 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. 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 significant 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.