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Frequently asked questions (FAQ) - PUBLIC

FAQ FOR PATIENTS

LIVER RECIPIENT


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 colored or clay colored 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; and
  • 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 dead” and whose family volunteers to donate the organ for transplantation. Cadaveric organ donation from brain-dead patients remains the principal form of donation in most parts of the world. “Brain 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-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 “TNMSC Organ Transplant”. 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 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 CTP 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 CTP 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 and if the blood group is matches with the donor’s and if the recipient is the 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. There are still over a large number of people on the waiting list. 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 hemorrhage (bleeding) and/or fluid accumulation in the abdomen. TIPSS 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
  • 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
  • Vomiting of blood from veins in the oesophagus and stomach (haemetemesis).
  • 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 color to the skin or eyes
  • Light-colored or blackened stools
  • Change in the color 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 protozoal 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?

A split liver or a partial liver transplant. Livers from young donors may be split into two pieces that are transplanted into two recipients.

FAQ’s for Paediatric Liver Transplant

Where can a child's new liver come from?

A child's new liver can come from one of several sources.

Few transplanted livers come from deceased organ donors. Organ donors are adults or children who have become critically ill or injured and have been declared brain dead.

The child may get a whole liver or a segment of one. If an adult liver is available and is an appropriate match for two children (or a child and an adult) on the waiting list, the donor liver can be divided into two segments, and each part transplanted (called a split liver transplant). If an infant or child receives a split liver, the liver segment will be the right size for the recipient even if it is only part of an adult sized liver.

A living family member or loved one may also be able to donate a section of his liver — called a living-donor transplant. Those who donate a portion of their livers can live healthy lives with the remaining segment, which will grow to original size of the whole liver. The liver is the only vital organ in the human body that can do this.

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 “TNMSC Organ Transplant”. 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 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 CTP 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 CTP 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 and if the blood group matches with the donor’s and if the recipient is the 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 will a child have to wait for a new liver?

Unfortunately, there's no definite answer to this question. Sometimes, children wait only a few days or weeks before receiving a donor organ, but sometimes it takes months or years. During this time, the paediatric liver transplant team will work to keep the child in the best possible health. This waiting time can be difficult, but there are quite a few things one can do to help the child and the rest of the family cope.

Does the child need to see his/her primary care doctor while waiting for a liver transplant? How often?

The child should continue to visit the primary care paediatrician for regular age-appropriate well visits and immunizations, as well as when he or she is ill in close association with the paediatric liver transplant team.

What about immunizations before and after liver transplant?

Once the child has been listed for a liver transplant, it's important that he continue to receive immunizations against childhood illnesses. In some cases, especially with infants, vaccinations may need to be given ahead of the regularly recommended schedule, in preparation for liver transplant.

Live vaccines such as MMR cannot be given for about 2 years after transplant. The transplant team will work with the parents to determine the most appropriate time to give the child live vaccines, as the schedule will require modification.

The paediatric liver transplant team will be happy to work with the primary care paediatrician to make sure the child gets the shots he needs to stay healthy before, during and after transplant. Should the child be exposed to any of the childhood diseases for which he hasn't been vaccinated, please contact the transplant team.

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 will the hospital contact the family when a donor liver becomes available?

The family will be asked to provide the hospital with contact phone numbers including home, work, cell phones, nearby relatives or neighbours. If the coordinator can't reach the family, the liver may have to go to the next potential recipient.
If the family goes out of town or changes the address, be sure to leave contact information with the liver transplant coordinator.

How quickly does one need to get to the hospital after a liver becomes available?

When contacted, the family will get specific instructions regarding time of arrival, and will have ample time to reach the hospital safely.

How long will the surgery be?

The surgery usually lasts eight to ten hours, but this can vary considerably based on the child's size, whether or not they have had prior surgery, and other factors. Throughout the surgery, an operating room nurse or other member of the transplant team will update you regularly on the surgery's progress.

How long will the child be in the hospital?

The average length of stay following transplant is approximately two to three weeks.

How big will the incision be?

Your child's incision will extend from the far right to just across the midline of the belly, in a curved line above the navel (along the underside of the rib cage). While it will be noticeable at first, it will fade over time.

liver

Can the child get tattoos or body piercings after liver transplant?

Tattoos and body piercings are discouraged due to the risk of transmission of hepatitis virus.

What restrictions will the child have during her recovery?

For the first six months after surgery, the child should avoid heavy lifting, abdominal exercises and vigorous exercise.

What happens if my child experiences rejection symptoms?

It's important that the family knows the symptoms of rejection and watch the child closely for them. And because the first sign of a rejection episode may show up in the regular tests the child will undergo (and not necessarily with any outward signs and symptoms) it's also important that it is ensured that all his follow-up appointments are kept.

Remember, many children experience at least one rejection episode following a liver transplant. Rejection only means that the transplant team needs to fine-tune the immunosuppressant medications the child is taking to prevent his immune system from trying to reject the liver. When a rejection episode occurs, the child's doctor may prescribe a short-term steroid treatment, and then adjust the dose of anti-rejection medications. Rejection is the body's normal reaction to something foreign. When a new liver is placed in a person's body, the body sees the transplanted organ as a threat and tries to attack it. To allow the transplanted liver to successfully live in the body, the child must take anti-rejection medications to trick the immune system into ignoring the transplanted organ. He/ She will need to take these medications for the rest of his/ her life. Rejection is fairly common, with approximately 40 percent of children experiencing some signs within the first two weeks of surgery. A liver biopsy may be necessary to make the diagnosis. Rejection is treated by adjusting medication doses and does not generally seriously injure the liver in this setting.
Rejection can occur anytime days, months or even years after transplant. While the word "rejection" sounds alarming, it's important to remember that rejection is treatable. A rejection episode doesn't mean the child will need another transplant.

Here are some of the symptoms of rejection:

  • Fever
  • Jaundice (yellow skin and eyes)
  • Changes in stool or urine color
  • Changes in bloodwork results

If the child experiences any of these symptoms, please call the liver transplant coordinator or the transplant office immediately. This physician will gather all your information and relay it to the pediatric liver transplant team.
Some or none of these symptoms may occur during a rejection episode. In fact, often, changes in laboratory tests results such as an increase in liver enzymes are the only signs of a rejection episode. That's why it's important to keep all scheduled transplant clinic and lab work appointments after the child is discharged from the hospital.
If the child’s doctor suspects that the child is experiencing rejection, he may order a liver biopsy . The biopsy confirms rejection and allows the physicians to see how much of the child's liver has been affected. If the child does have a rejection episode, he or she may need to be hospitalized for a few days while medications are adjusted.

What kinds of long-term activity restrictions will the child have after liver transplant?

Most children who receive a liver transplant have no restrictions. They attend school and participate in sports and other age-appropriate activities. In fact, after liver transplant, children may find they can do more than they could before transplant, when they were feeling ill. While the parents may be concerned about the child's health, it's important to remember that the child is a normal child who should be given the opportunity to do all the things other children do. The only difference is that the child must continue to take anti-rejection medications as directed.
If you have questions about what your child's life will be like after liver transplant, both now and when he/she becomes an adult, don't hesitate to ask.

Can my child have children once she is an adult?

Yes. Liver transplant recipients appear to have normal fertility and many children have been born to both male and female recipients. If they had a genetic disease this may impact fertility and may be passed on to children. This should be discussed prior to pregnancy. Women contemplating pregnancy should visit an ob-gyn doctor prior to conception, or as soon as possible afterward. It is very important to continue anti-rejection medications during pregnancy, as rejection is difficult to treat in pregnancy and is dangerous for both the mother and child.

What's the survival rate for children with liver transplants?

Survival rates vary from hospital to hospital around the country.



KIDNEY RECIPIENT


I am a kidney failure patient on dialysis; from whom can I get a kidney?

You can get kidney from either of the following:

  • Kidney from a healthy living donor.
  • Kidney from a person who is Brain Dead (a Deceased Donor).

Who cannot get a kidney transplant?

Each patient is evaluated on a case-by-case basis; almost any person with renal failure up to the age of 65 can get a kidney transplant.

Is there a weight restriction?

No

Can my child get a transplant?

Yes, children can also get transplants if matched with a suitable donor.

Which is better – dialysis or transplant?

Transplant is a better option. On average transplant patients live longer than patients on dialysis. Dialysis patients have to come to dialysis unit thrice a week or have thrice a day peritoneal dialysis at home. Transplanted patients enjoy a better quality of life, have more liberal salt and fluid intake, go to their work as usual, and have normal family life. Also, in the long run, transplant is more economical. Transplant puts the patient back into society as he was before kidney failure.

When is the best time to get a transplant?

In general, as early as possible, once dialysis is initiated. The transplant team and your nephrologists will determine the best time for you.

What medications will I have to take after the transplant?

Anti-rejection medications are to be taken as long as you have your transplanted kidney. Following transplant, patients usually take:

  • Medication to prevent kidney rejection.
  • Medications for other health issues (blood pressure, diabetes, etc.)

How long will I be in the hospital?

Patients typically spend from 7 to 10 days in the hospital following kidney transplant surgery.

What would happen if kidney transplant didn’t work?

If transplanted kidney does not work, your Nephrologist may do blood test and perform kidney biopsy and treat accordingly.

What would happen if kidney transplant didn’t work despite all treatments? Would I die?

No. If the transplanted kidney doesn’t work, you can:

  • Continue dialysis
  • Pursue another transplant

What can patients do if they want a transplant but don’t have a suitable living donor?

Patients who do not have a living donor whose kidney will match; can register on a state waiting list to get a deceased donor transplant (cadaveric donor).

How do I get on the state waiting list?

You first decide on the hospital where you wish to get the transplant done and then ask your Nephrologist in that hospital to put you on the common wait list after paying a onetime fee through a DD of Rs. 1000/- in favor of “Transplant Authority of Tamil Nadu”. You will then be registered and be given your wait list number. Transplant coordinator of the hospital will guide you on this. Registration through Government Hospitals is done free of cost.

How will I get the kidney once I get on the wait list?

Whenever there is a brain dead person in any of the participating hospitals, the organs are allocated to persons in the wait list. First few in the wait list will be alerted. Recipient tests will be performed by your doctor. Also, cross match test between first few recipients and brain dead donor will get carried out simultaneously. After these tests, the topmost listed fit recipient will be allocated the kidney.

How long is the average waiting time for a kidney?

Most patients wait for one to two years for a kidney from the deceased donor waiting list. If you want to get a kidney from a deceased donor, the important thing to do is to get on the list as soon as possible. Any patient who is on Dialysis for at least 2 months can get registered.

The first thing is, of course, to explore the possibility of living donor transplants from your relatives.

Is the waiting list fair?

Strict rules and Government orders have been set up to make sure that no one can jump the waiting list. Above all, there is full transparency to the waiting list. The waiting list is accessible to the hospitals where the patients can check their rankings. Matching is based on blood type and the wait time. Your income, caste or creed does not prevent you from receiving a kidney, nor do they move you up/down on the list. For kidney recipients, there is no URGENT wait list either.

How is Kidney allocated to patients on the waiting list?

The 2 kidneys from a donor are termed as local kidney and share kidney. Local kidney is allocated to a patient from the hospital where the donor is. The hospital can allocate it to a registered patient of the same blood group as the donor on their waiting list as per the priority listing in the hospital. The share kidney is allocated to the registered patient who is first on the common waiting list with the same blood group. Kidneys are allocated to patients 60+ years from donors who are 60+ years after the patients below 60 years on the common waiting list have declined the offer.

Is there a difference between having a living or deceased donor transplant?

Yes. Live related donor transplant provides better results. Living donor transplants last longer than deceased donor transplants. Because a living donor kidney is removed from a healthy donor in the operating room and transplanted right away, living donor transplants last on average for 15-20 years and deceased donor transplants last for 10-15 years. This is only an average and quite a good number of transplants last much longer.

Which kind of transplant happens faster?

If a living donor is available, a living donor transplant happens faster, often within 3 months. With a deceased donor transplant, most patients have to wait 1-2 years until a kidney is available from the list.

Is it possible for me to buy a kidney from a live donor?

Such transactions are illegal and punishable. None should attempt that.

I am willing to give my Kidney to any person with my blood group, can you arrange for someone         else to give their kidney with my kin’s blood group to my kin?

This is called swapping; it is legally acceptable. You can contact your nephrologist for more detail.

Can I be on more than one hospital wait list to get kidney from a brain dead donor?

No. You are allowed to be on only one hospital wait list at a given time. It will be the hospital where you have decided to get your transplant surgery done.

Can I change my hospital after I register through one hospital?

You are at liberty to shift to any hospital (approved by the Government for transplant) of your choice in Tamil Nadu. You can change your hospital and request the new hospital to send in your detail to us by mail and you will need to send a handwritten letter requesting us to change your registration from the previous hospital to the new one. This will not affect your priority in getting a share kidney allocated from the common pool. It is your date of registration in the wait list the first time you registered through any hospital that will determine your priority in getting the share kidney allotted.

Which is the best hospital to get this transplant done?

You can view the list of hospitals registered under our program for cadaver transplant as given on this website and call and visit them and decide where you are comfortable and make the decision.

Can you tell me how much a kidney transplant will cost me?

Two costs are involved. One is the cost of surgery and the other is the cost of the medication you need to be on for lifetime after the surgery, in order to ensure that your body does not reject the kidney transplanted. The later is called immunosuppression.

In Government hospitals (GH and Stanley Hospitals at Chennai) you will get free transplant surgery and thereafter free immunosuppressive medicines for lifetime.

Patients holding CM Comprehensive Health Scheme cards will get free transplant and free medication for one year in select private hospitals approved by the Government for this purpose.

As for private hospitals in general, you need to ask each of them their transplant surgery and follow up test costs. Immunosuppressive medication will cost approximately Rs 1.2 Lakhs per annum during the first year. It may go down in subsequent years.

Are there any blood products I should try to avoid?

Yes. Kidney patients should try to avoid receiving any blood products (whole blood, plasma, platelets, red blood cells) because this can increase antibody levels in your blood. High levels of antibodies make it difficult to find a tissue matched donor.

In case I would like to defer my transplant when my name comes up for the transplant, then will I         be allowed to stay on the wait list?

Yes, you will be. During this time your status will change from being “active” on the kidney waiting list to being "inactive". During the time when you're listed as inactive, your wait list status remains same. However, you will not be called for deceased-donor transplant as your status is inactive. Once you are fit and willing, your nephrologists or transplant coordinator can make your status “active”.

The reasons for being inactive vary, but might include health changes such as infection or hospitalizations or any personal reason you may have. Once you are ready you will be put back as active and have the chance for a transplant without losing your priority.

What is a cross match?

Blood from both donor and recipient are taken to test the presence of preformed antibodies in the recipient’s blood against the donor’s organ. You will be taken up for transplant only if cross match test is negative.

How long do I need to go for a checkup after the transplant?

You need to go for regular medical checkups throughout your life after the transplant. Initially; for six weeks, the patient has to go on alternate days for a check- up, when blood tests will be done and medicines adjusted and if needed an ultrasound of the kidney will be done. Once the patient is stable on the medications, then, he needs to go for check-up once in 3 months, when an ultrasound of the kidney and blood tests will be done to check the functioning of the kidney and adjust medicines as needed. Once the patient is stable on this routine, then, he can go in for checkups once in 6 months. However, if needed, the patient should go in for a check- up as needed.

However lifelong medicines and periodic blood tests and regular consultations are necessary to get the full benefit of transplant. Also it is useful to remember that transplant replaces only the kidney and if you have other medical problems like diabetes, heart disease, high BP and such other, you require extra care. You are also prone to infections and hence lifelong monitoring is needed.



HEART RECIPIENT


What is a heart transplant?

A heart transplant is a surgical procedure for patients with end stage heart disease. Their hearts are so severely damaged that maximum medications, pacing devices, and surgical repair cannot help to prolong life. A new heart is need to prevent death.

There are two types of heart transplantations.
Orthotopic: The diseased heart is cut and discarded. Then a new heart from a Donor, who is brain dead, is stitched in its place.
Heterotopic: Also called “piggy back” heart transplantation. In this the diseased heart is left in the chest in its original place. A new heart from the donor is piggy backed on the old heart. This is called Heterotopic Heart Transplantation.

Orthotopic Heart Transplantation is the one that is commonly done.

How is Heart Transplantation done?

The patient is placed under general anesthesia, an incision is made through the breastbone. The patient's blood is re-routed through tubes to a heart-lung bypass machine, which will function like the heart and lungs, while the diseased heart is cut out and the new heart from the donor is stitched in its place.

How will a transplant change my life?

A successful transplant will dramatically improve your symptoms of heart disease. It will give you a new lease on life; a second chance to live. Many transplant recipients can perform the same physical activities and enjoy the same quality of life as normal people.

In life there is a day and a night. Ever where there is a tide there is an ebb. Duality enfolds nature. For every advantage there is a disadvantage For example, if you take Aspirin it will reduce your headache, but will increase your acidity. So Heart Transplantation has advantages; it also has disadvantages.

All transplant recipients, however, need to take medicines daily. Each medicine has its characteristic side effect. Therefore you need to be under close medical supervision for the rest of your life.

What is the success rate of Heart transplants?

According to the International Society of Heart and Lung Transplants (ISHLT), 85-90% one year survival, 50-60% 10 year survival.

If I have end stage heart disease, and I have been advised Heart Transplantation by my Cardiologist,         how can I get this Heart Transplantation?

You will be evaluated by the Heart Transplantation Team at any hospital approved for it, then you will be listed for Heart Transplantation with the Cadaver Transplantation Program on Tamil Nadu. This will be done by a deposit of a Demand Draft (DD) of Rs. 1000/= {Rupees one thousand only} in favor of “Transplant Authority of Tamil Nadu” . This will be done by the Transplantation Coordinator of your institution. This registration is not applicable to patients who are listed through the Government Hospital.

What is Evaluation for Heart Transplantation?

The transplant evaluation is done so that doctors ensure that you get maximum benefit from the surgical procedure.

In addition to specific heart assessment, tests are performed to determine the function of all the major organ systems. You will be screened for infectious diseases and cancer. Your cognitive functions will be tested by a Psychologist. Thus the team will be able to judge, whether you will be able to be comply with the complex medical regime after your Transplantation.

Your anxiety and stress will be evaluated by a Psychiatrist. Your family support will also be assessed. Most tests can be done in the outpatient division; you may not need to get admitted for them. You may require to be admitted briefly to the hospital for some tests.

Typically, most of the evaluation can be completed within a week.

The transplant teams will meet to discuss patients under evaluations. Patients who are felt to be good candidates for transplantation are then put on a state waiting list.

How do I get on the state waiting list?

You first decide on the hospital in which you wish to get your Heart transplanted. Then, after evaluation, the Transplantation Team of your hospital will ask your Transplantation Coordinator to put you on the wait list by paying a onetime fee through a DD of Rs. 1000/- in favor of “Transplant Authority of Tamil Nadu.”
You are then registered. You will receive your wait list number from your Transplantation Coordinator. The Transplant Coordinator will assist you with all logistic issues related to your Heart Transplantation.

What is the recovery process after a heart transplant? How long will it take to recover?

When surgery is completed you will be taken to the intensive care unit. Over the following days as you recover from surgery, the various tubes and intravenous lines will gradually be removed and rehabilitation will begin. You will be closely monitored and evaluated to make sure your body is accepting the new organ. This includes regular heart echocardiograms, electrocardiograms and biopsies.

You are likely to be mobilized in the first couple of days. Most patients are able to walk in three or four days. Most patients are discharged from the hospital by two to three weeks after their Heart Transplantation.

Once you are discharged from the hospital, the medical team will encourage you to become increasingly active by starting Cardiopulmonary Rehabilitation. This should continue till you are able to resume your normal life once again.

How long will I be in the hospital after the surgery?

The average length of stay in the intensive care unit is 3-7 days, followed by 1-2 weeks in the hospital.

What happens while I am waiting on the heart transplant waiting list?

While waiting, you will be seen in the clinic periodically to assist with any medical issues that may arise. Almost every patient will need to have a right heart catheterization and other tests every three to four months. These tests are important to help the doctor know whether problems are developing that could complicate a transplant, or move you ahead in priority for a new heart.

Some programs have regular weekly meetings of all patients on the waiting list and those who have already received heart transplantation. If your program has such group meetings, it will be beneficial for you to attend them. These group meetings provide great psychological support and create a non stressed, informal atmosphere for learning complex transplantation related issues. They also provide mutual motivation. You can also meet your entire Transplantation Team in a relaxed atmosphere.

How will I get the Heart once I get on the wait list?

Whenever there is a brain dead donor in any of the participating hospitals, the transplantation coordinator of that hospital has to inform the TRANSTAN office of this donor. Once consent is given by the family, the TRANSTAN office will allocate the organs according to the established guidelines and your doctor will decide on the suitability of the organ for you based on medical criteria.

If the organ is allocated to you, your hospital transplant coordinator will call to inform you. It could be at any time of the day or night.

You need to keep your bag packed with all your reports, X-rays, medications and your personal toiletry so that you can reach the hospital as soon as possible.

How long must I wait for a donor heart?

Not very long. Your doctor will be the best person to assess this for you. If your heart failure has reached a very severe stage (there are criteria to judge this) your doctor will put you on the Urgent list and you will be allocated the next available donor heart suitable to you.

Is the surgery very complicated?

Risks and the benefit of the operation will be explained to you by the Transplant Team as it applies to you.

How often will I have to come back to the hospital after my transplant?

Initially, follow-up care involves returning to the outpatient clinic once a week for the first month after leaving the hospital. At this time a series of tests are given to closely monitor your progress. At this time, medications will be precisely adjusted. After this initial period, patients will be seen periodically (bi-weekly, then monthly, then quarterly) over the first year. Thereafter scheduled visits may need to occur less often, depending on the particular patient's condition.

Do I have to stay near the hospital after the transplant?

Most patients are allowed to go home after they have recovered from the transplant surgery. Although there is no specific requirement about staying close to the hospital during the initial period after transplantation, the frequency of follow-up visits and lab tests during this interval can be a problem for patients who live far away. The social worker can help you locate suitable guest housing in the area.

Will I have pain after the surgery?

Generally, most patients do not report much pain after heart transplant surgery. The incision does cause pain or discomfort when you cough. The doctors will give you pain medication and specific instructions to lessen the pain.

What will my scars look like?

The scar is down the center of the chest. It starts at the supra sterna notch, or top of the sternal bone, just under your neck, and ends just past the end of the sternal bone. Initially the scar will look prominent. Over time, it will fade to a very light, thin line.

Will I have to take medications for the rest of my life?

Yes. This is very important. It is necessary for all patients to take immunosuppressive medications for the rest of their lives following transplant, because the medications help to prevent rejection of the heart. Unfortunately, it is very rare that a patient becomes "tolerant" of their new heart. A successful transplant can be undermined very quickly if patients fail to take their medications appropriately and responsibly.

What is rejection?

In your blood there are red blood cells and white blood cells. The red blood cells carry oxygen. The white blood cells protect you from bacterial invasion by killing the bacteria.Now when a new heart is placed in your body, the white blood cells identify it as a foreign protein, as they come to know that this heart does not belong to this body. So they communicate with each other by releasing chemicals called cyctokines, and increase the number by rapid reproduction. Then they come to attack the new heart. This is called rejection.

What are immunosuppressive drugs?

These are a group of medicines that reduce the number of white blood cells in the body. They must be taken for life. They cannot be stopped at any time without the permission of one of the transplant doctors. Different programs have different regimes.

When can I drive?

After heart transplantation, you can drive when your sternum, or breastbone, is fully healed. This takes about 4 months to get full tensile strength. It is safe to wait for four months.

When can I return to work?

You may return to work two to three months after the transplant surgery.

How long does it take to fully recover?

It generally takes three to six months to fully recover from heart transplant surgery. However, age and previous medical problems may cause a longer recovery period.

Who pays for the costs of transplant and other medications?

For patients undergoing transplant

  • In Government hospitals (GH) Free transplant and free immunosuppressive medicines for life.
  • In private hospitals (which are approved for Transplant under the CM Comprehensive Health scheme), poor patients holding CM Comprehensive Health scheme cards, free transplant and free immunosuppressive for 1 year.
  • In private hospitals for any other patient transplant cost will vary from hospital to hospital. You should enquire with the hospital you are considering for your heart transplant.

What happens if I change my Hospital?

You are at liberty to shift to any hospital (approved by Government for transplant) of your choice in Tamilnadu.
You can change your hospital and request the new hospital to send in your detail to the TRANSTAN office by mail and you will need to send a handwritten letter requesting to change your registration from the old hospital to the new one with all details.

What types of costs are associated with transplant?

There are several phases in the transplant process. It may be helpful to break down these costs by looking at these phases.

Phase 1: EVALUATION AND STABILIZATION: The first costs are those associated with the pre-transplant evaluation, which would include all the tests necessary to determine if you qualify to be on the waiting list. There may be costs of hospital admission for medical treatment and stabilization before your transplant.

Phase 2: THE TRANSPLANTATION OPERATION: After that, when you are called in for your organ transplant, you will incur the costs of hospitalization, transplant surgery and various professional and facility fees. Due to the wide variety of patient conditions and treatments, it's very difficult to give an average total cost for the aforementioned treatments. Each case and each patient's condition is different.

Phase 3: POST DISCHARGE CARE: If you have rejection or infection you may need to be readmitted to ICU or Wards. The cost of Immunosuppressive Medications. Cost of Medication for prevention and protection against Bacterial Viral and Fungal infections. Costs of Biopsy and right heart catheterization that may be done monthly by the program of our choice.

You need to discuss all of this with your chosen hospital at the very beginning.



LUNG RECIPIENT


What is Lung Transplantation?

Lung transplantation is the surgical replacement a diseased organ by a healthy organ of either one (single) or two (double) badly diseased lungs with healthy lungs from a human organ donor.

The decision to perform lung transplantation is made when the doctors feel that there is no other treatment that can help your lung disease. The transplant doctors will determine whether you need a single or double lung transplant based on your particular lung disease, medical condition and history. In most cases involving PPH the patient is experiencing severe pulmonary arterial pressure and a double transplant is needed.

How do I know if I need a Lung transplant?

The lungs provide your entire body with oxygen and remove carbon dioxide. When lungs can no longer exchange oxygen and carbon dioxide, a patient is considered in end-stage lung failure and lung transplantation is considered. Several different diseases can lead to end-stage lung failure including chronic obstructive pulmonary disease (COPD), interstitial lung disease, and primary pulmonary hypertension

Some patients with severe lung disease may benefit from transplantation. Your cardiologist or pulmonary medicine specialist may refer you to a transplant center for an evaluation. The purpose of the evaluation is twofold: first, to determine the severity of your disease and whether there are any more conventional treatments; and second, to determine whether you would be able to survive the transplant operation and have a good long-term result afterwards.

How will a transplant change my life?

A successful transplant will dramatically improve your symptoms of lung disease. Many transplant recipients can perform the same physical activities and enjoy the same quality of life as normal people. All transplant recipients, however, are committed to daily drug treatment and close medical supervision for the rest of their lives.

Is the evaluation very difficult?

The transplant evaluation is very thorough. In addition to specific lung tests, tests are performed to determine the function of all the major organ systems, screen for infectious diseases and cancer, and try and predict how well you and your family will cope with the rigors of the transplant regimen. Many of the tests, even the complex ones, are fairly well standardized and can be performed in your local Labs. Some tests may require you to be admitted to hospital briefly. Every potential candidate make at least one outpatient visit to their transplant center to meet with the transplant physicians, coordinators and counsellor. Typically, most of the evaluation can be completed within a week or two. The transplant team meets weekly to discuss patient evaluations and make decisions on appropriate treatment. Patients who are felt to be good candidates for transplantation are then put on the waiting list.

What happens during the initial evaluation?

Once you have been referred for a transplant evaluation, a clinic visit will be scheduled. At your first visit, you will meet with a Transplant Pulmonologist and Transplant Coordinator. You will be interviewed, examined, and counseled about your options for care. This may or may not include a full evaluation for lung transplantation. The realities of having and living with a lung transplant are explained and discussed. If necessary, additional testing will be scheduled. Testing may include but not be limited to:

  • VQ scan
  • Bone Density Scan
  • Chest X-ray
  • Abdominal Ultrasound
  • Chest CT scan
  • Six-minute walk
  • Echocardiogram
  • Cardiac Catheterization
  • EKG
  • Blood work
  • Pulmonary Function Studies
  • Urinalysis
  • Psychological evaluation

Who makes up the lung transplant team?

There are many members of the lung transplant team. Each person is important because they bring special knowledge and expertise to help you during all phases of the transplant process.

  • Transplant Surgeon: This doctor will actually perform the lung transplant operation. Along with your pulmonologist, the surgeon will closely monitor your care before and after surgery.

  • Transplant Pulmonologist: This doctor monitors your care before and after surgery. The pulmonologist is skilled in treating lung disease and determining whether a transplant would be beneficial. After surgery, the pulmonologist will visit you in the hospital and monitor your care.

  • Transplant Coordinator: This person is responsible for “coordinating” your care through the transplant evaluation process up until transplantation. The transplant coordinator acts as a liaison between you and your doctors.

  • Transplant Nurse: The transplant nurse oversees the details of your care after transplantation including medications, laboratory and other test results, and collaborates with your physician to provide ongoing management of your care.

  • Transplant Administrative Assistant: The transplant secretary is the record keeper for the transplant team. Responsibilities include scheduling tests, clinic visits, and communicating messages to other members of the transplant team.

  • Transplant Social Worker: The transplant social worker will help you with the “social aspects” of your care. The social worker can provide information on insurance, and the financial part of the transplant. The social worker can also help arrange transportation, lodging and support services for you and your family.

  • Physical Therapist: The physical therapist will help you plan a physical activity program to follow during your hospital stay and at home.

Other Members of the Transplant Team: During your hospital stay you will meet many new people including nurses, resident physicians, the dietician, the psychiatrist, the respiratory therapist, and other team members as needed.

What does it mean to say 'I'm on the list?'

The heart transplant waiting list is organized through the Tamilnadu Organ Sharing network which is the state list. To be on the list means that your name and important medical criteria are listed on TNOS computer database. Once listed, you may be called at any time, day or night, to come directly to the hospital for a transplant.

How do I get on the state waiting list?

You first decide on the hospital in you wish to get the transplant and then ask your Cardiologist to put you on the wait list after paying 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. Transplant coordinator of the hospital will guide you in this. Registration in Government Hospitals is done free of cost.

How long do I wait on a Transplant Listing?

After a patient has been accepted as a suitable candidate for lung transplantation, they will typically be contacted by a transplant coordinator. The patients name will be placed on state waiting lists for donor organs. This organization maintains a computer listing of all patients waiting for donor organs - heart, lung, kidney, liver, or pancreas.

When donor lungs become available, several factors are taken into consideration to make a match: including an individual's blood type, body weight, chest size and length of time on the list. Tissue typing is done retrospectively.

The first factor to be considered when deciding who will receive the organs is blood type. Only the major blood group (O, A, B, AB) is considered not the Rh factor (positive or negative). Next, the size of the donor is matched with the size of the recipient. The donor lungs can not be too large or too small to fit in the chest cavity of the recipient. Length of time on the list and severity of illness are other factors that are also considered. These factors make it difficult tell you what your "position" is on the list. Many factors are taken into consideration when determining who receives the organs.

It will help to understand what these factors are and what to expect when you receive "the call". The list of people waiting for organs continues to grow on a daily basis and there are not enough donor organs to meet these needs. Those involved in transplantation take very seriously the need to increase donor awareness by educating the public.

Who pays for the costs of transplant and other medications?

For patients undergoing transplant

  • In Govt hospitals (GH, Stanley) Free transplant and and MMF(immunosuppressive) medicines. This is for lifetime.
  • In private hospitals (which are approved for Transplant under the CM Comprehensive Health scheme), for poor patients holding CM Comprehensive Health scheme cards, free transplant and free immunosuppressive for 1 year.
  • In private hospitals for any other patient transplant cost will vary from hospital to hospital. You should enquire with the hospital you are considering for your Lung transplant.

What happens if I change my Hospital?

Please note cadaver heart is allocated to the registered patient and not to the hospital. Hence you are at liberty to shift to any hospital (approved by Govt for transplant) of your choice in Tamilnadu.
You can change your hospital and request the new hospital to send in your details to us by mail and you will need to send a handwritten letter requesting us to change your registration from the old hospital to the new one with all details. Your overall wait list number will remain the same; however your wait at the hospital will change according to the new hospital.

Who is a Lung Transplant Donor?

Donors are people who have suffered some sort of accident and all efforts to save their lives have failed. They have been determined to be brain dead and are maintained on life support to control breathing and other body functions. Donors are carefully tested to rule out any infections that could potentially spread to the person who receives organs from them. The organs are also carefully screened to assure they function perfectly and are free from injury. Many people who are waiting for a heart-lung transplantation have mixed feelings related to the fact that someone must die in order for them to benefit from these organs. These feelings are common. It helps to remember that many donor families achieve a measure of peace and satisfaction knowing that some good has come from their misfortune.

How will I Be Notified?

Donor organs become available any time of day, any day of the week - usually when you least expect it.
When a donor organ becomes available for you, you will be notified by a donor transplant coordinator. This person will attempt to reach you first at your home number. If there is no answer, they will try the other phone numbers that you have provided. You will be instructed at that time where you will need to go once you arrive at the Hospital. Do not eat or drink anything after you have received this call. Many people keep a small bag packed with a few essential items such as toothbrush, shaving supplies etc. in preparation for "the call". It will be necessary for you to come directly to the hospital. Once you have reached the hospital, you will be taken to a room to be prepared for surgery. You will be given a physical exam, have blood drawn and you will be asked to sign the consent forms. You may also be given the first immunosupressive medication. Your family may stay with you until you are taken to surgery. They will then wait in the surgical family waiting room until the operation is complete.

What should I do to Prepare before surgery?

While you are waiting for transplantation, it is very important that you maintain good communication with the transplant coordinators. You will need to provide the hospital with a list of phone numbers so when organs become available, they will be able to get contact you. Think about who would most likely be able to reach you if you are not at home. When attempts are made to contact you when donor organs become available, the person trying to reach you will not leave a message on an answering machine. It is important that they speak directly with someone. If you leave instructions on the answering machine on how to contact you, those instructions will be followed.

It will also be important for you to let the transplant coordinators know how you are doing while you are waiting. Specifically, you will need to notify the transplant coordinators if you are placed on any antibiotics, if your steroid dose changes or if you are hospitalized.

While you are waiting for transplantation, you will see one of the transplant pulmonologists frequently. Also, one of the transplant coordinators will contact you by phone periodically. This will allow the team to monitor your condition.

It will be important for you to remain as healthy as possible while you are waiting for organs to become available. Maintaining a healthy diet and adequate weight will help to insure this. You should participate in regular exercise while you are waiting for donor organs. This can be accomplished through a rehab program close to your home. Exercise and an adequate diet help to keep you from losing muscle tone and will make recovery from the surgery much easier.

Is the surgery very complicated?

This depends on your specific situation. The transplant surgeon will review the details of the surgical procedure, the risks of the procedure and the expected post-operative convalescence during the evaluation interview.

How long will I be hospitalized after the transplant?

This depends on your specific situation. Although patients can recover sufficiently after lung transplantation to be discharged within 10 days, it is more typical for patients to be hospitalized for two weeks or more.

Do I have to stay near the hospital after the transplant?

Most patients are discharged home after transplant. Although there is no specific requirement about staying close to the hospital during the early post-transplant period, the frequency of follow up visits and lab tests during this interval can be a problem for patients who live far away. The coordinator or counsellor can help you to locate guest housing in the area.

Will I have pain after the surgery?

Generally, most patients do not report a lot of pain. You will have an incision that does cause pain and discomfort when coughing. You will be given pain medication and specific instructions to lessen the pain.

Can my family stay with me?

Your family can accompany you until you go into the transplant surgery. While you are in the intensive care unit, family members may not stay in your room. Your family members are encouraged visit during visiting hours. If your visitors are ill (flu or colds), they should not visit you. This is to protect you from the infection.

When can I drive? When can I return to work?

You may drive after two to three weeks, once your incision is healed. You may return to work after two to three months from the transplant surgery.

What medications will I take after the transplant?

You will be on immunosuppressive (anti-rejection) medications after transplant, that must be taken daily for the rest of your life. It is important that they are taken exactly as prescribed to maintain a balance. Taking too little medicine will allow rejection to occur and too much will alter your body's ability to fight off infections.
Along with the immunosuppressive medications you will need to take several preventive medications against infection.

How long does it take to fully recover?

It generally takes three to six months to fully recover from the transplant surgery. Age and previous medical history problems may cause the recovery period to take longer.

What are the risks of Rejection and Infection?

Often the body rejects the new lungs, seeing the transplanted lungs as being foreign to the body and responds by attempting to fight and destroy it. Your immune system is responsible for this reaction which may be very potent. When a major organ such as the lung is implanted, the body will recognize this as foreign and will attack using its immune response to the new lung.

In order to prevent rejection, the patient will be treated with immunosuppressants, medications that interfere with the body's normal immune response. Taking these drugs will require a lifelong commitment after transpantation.

Most patients will have episodes of rejection in the first several months after transplant. The treatment requires patients come into the hospital for a few days and receive doses of the anti-rejection medications intravenously. Determining the proper levels of immunosuppressant medication is a matter of frequent adjustments, as each individual is unique and requires and individualized approach. To assist in this adjustment process and to catch any episodes of rejection or infection early, when they are easier to treat, patients may be asked to monitor your lung function at home and to report any significant changes.

The goal is to find the lowest dose that will prevent rejection and therefore minimize the risk of infection and side effects from the medications.

Because the immune system is suppressed to prevent the patient from rejecting your new lung, the patient are more susceptible to infection. The patients temperature and white blood cell count is monitered closely after the procedure. Infections are generally treated with antibiotics, sometimes only for one to two weeks, but possibly longer. The patient will also be asked to take certain immunosuppressants regularly to prevent further infection.

After lung transplantation the patient will need to take the anti-rejection medications as prescribed by the team every day sometimes twice a day, for the rest of their life. Without these drug the body will reject the new lungs. Rejection of the lung can result in death and is a serious risk.

FAQ’s for Paediatric Lung Recipients

What diagnoses lead to lung transplantation?

The most common diseases that lead to lung transplantation are cystic fibrosis, pulmonary hypertension, bronchiolitis obliterans and interstitial lung disease. Diseases leading to lung transplantation in infancy are surfactant dysfunction disorders, lung underdevelopment and some forms of maldevelopment of the pulmonary blood vessels.

Some children with congenital heart disease develop pulmonary hypertension and have congenital heart defects that are not amenable to surgical correction. These children are potential candidates for pediatric heart-lung transplantation.

Who is a candidate for pediatric lung transplantation?

Infants, children and adolescents with severe lung or pulmonary blood vessel disease (usually some form of pulmonary hypertension) whose prospects for survival and quality of life are poor are considered potential candidates for lung transplantation. Patients with severe liver and lung disease also may be candidates for lung-liver transplantations. In limited circumstances, patients who also have severe heart problems may be candidates for heart-lung transplantation.

Infants from the earliest months can undergo successful lung transplantation. Many times, these infants are usually quite ill and on ventilators at the time of referral. With a more immature immune system, infants are more susceptible to certain kinds of infection, but they also are somewhat less susceptible to organ rejection.

Some children have survived more than 10 years since lung transplantation in infancy.

What are the types of lung transplants?

Most infants, children and adolescents who are candidates will receive two lungs from a deceased donor who has been diagnosed with brain death. Bilateral or double lung transplant organs are matched by blood type and the height of the donor and recipient. Children 12 years of age or older are listed with a lung score as well. The standard transplant operation involves several hours of cardiopulmonary bypass (a heart-lung machine), and the operation takes approximately 6 to 10 hours.

In unusual circumstances, heart-lung transplantation or lung-liver transplantation may be necessary. The heart and lungs of a single donor are implanted together while the child is on cardiopulmonary bypass. The same surgeons who perform the isolated lung transplantation also perform this procedure.

In the lung-liver scenario, the lung transplant is done first and then a second surgical team joins the operation and performs the liver transplant with the organs coming from the same donor. In this case, the operation can easily extend to 10 hours or more.

Will we need to stay near the hospital to wait for lungs?

Because of the uncertainty of when organs will be available, it is important for patients to live close to the hospital while waiting for a transplant.

The hospital team rarely has more than six hours – and often much less – after first notification of potential organs. During that short time, the team has to admit the child into the hospital, perform lab work, start an IV and administer critical medications. Families who live within a 2-hour drive of the hospital can stay at home with the understanding that there may be a number of calls and long drives that do not end with an operation.

What do I do when we get a call?

First, stay calm. Getting the child and yourself to the hospital safely is very important. The hospital may call you early to stop a tube feeding or halt a meal or snacks in anticipation of possible surgery. It is best to have a suitcase packed with essential clothing and sundry items.

What if a newspaper or television station wants to do a story on our child?

Please refer all requests for interviews to the hospital’s public relations.

What immunizations should my child get and which should he or she avoid before and after          transplantation?

It is important to prevent illnesses before and after transplant surgery, so all immunizations - including chicken pox vaccine - should be given prior to listing for transplantation. Patients also should be vaccinated against pneumonia.

An annual influenza vaccine is important before and every year after the transplant for the whole family. Since the flu vaccine is only about 85 percent effective, if the patient or a family member begins exhibiting influenza symptoms, a course of influenza medication should be considered.

Live virus vaccines are the only ones that should not be given after transplantation. Live vaccines include measles, mumps and rubella (MMR), and oral polio vaccine.

Will the procedure be very painful for my child?

Hospitals use of thoracic epidural catheter for administration of local anesthetic and strong pain medications into the area of the spinal canal where the incision is made. This provides effective relief of pain and helps facilitate removal of patients from the ventilator within a few hours after transplantation. It is important to minimize pain so that patients can take deep breaths and cough effectively. The hospital team will work with each child to ensure they receive the support and reassurance they need.

What can we or the hospital tell our child to allay his or her worries about lung transplantation?

Most pediatric lung transplant team are committed to treating patients and families with honesty and compassion. When working with children, an age-appropriate approach is taken in answering their questions and the team tries to answer all questions. However, the team does not always have all the answers to all questions about transplantation, especially those involving wait time, graft function, recovery and survival. When possible, it is tried to match young transplant candidates and their parents with a patient or parent who has already gone through the transplant experience.

Why do you have to do so many bronchoscopies after transplantation?

In the first year after transplant, it is usually to perform a bronchoscopy on patients about six to eight times. It's the only way to know if a child’s body is rejecting transplanted lungs

The bronchoscopy procedure is done in a special room at the hospital. It takes about 30 minutes, and the stay in the room is less than four hours. During the procedure, a healthy dose of intravenous sedation is given, and a special instrument is used to biopsy deep within the lung. 6 tissue samples are taken with each procedure. The location from which the biopsies are taken may be alternated from procedure to procedure.

The bronchoscopy helps us see the appearance of the largest bronchial tubes, including the presence of mucus, and test for infection by instilling sterile salt water solution and withdrawing it for lab tests.

The frequency of the bronchoscopy procedure decreases after the first year after transplantation.

What age does a child have to be to have a lung transplant at the hospital?

Let us consider infants first. Most infants who might need a lung transplant are very ill and on mechanical ventilators. Donors for these infants are uncommon and rarely less than two months of age and therefore usually over 12 lbs in weight. This makes offering a lung transplant to infants under 10 lbs of age very difficult. If an infant is so sick that they are on ECMO (extra-corporeal membrane oxygenation or a heart-lung machine), most hospitals will not accept such infants until and unless they can be weaned off ECMO and stabilized enough to be transported to the hospital.

On the other edge of the age spectrum, patients up to 18 years of age are accepted. As a general rule, patients are accepted only when they have a relative clinical stability so that the burden on the accepting team is not so great.

If my child is certain to die without a transplant, is that not a good enough reason for him or her to         have a transplant without question?

Organ transplantation is an expensive procedure and there are not enough organs to go around. Therefore, as a rule, suitable candidates for transplantation do NOT include all patients dying of single organ failure but that subset of patients who also have a good chance of surviving and living a near normal life.

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