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What is Lung Transplantation?

Lung transplantation is the surgical replacement of 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 centre 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 makes at least one outpatient visit to their transplant centre 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 counselled 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
  • Chest X-ray
  • Chest CT scan
  • Six-minute walk
  • EKG
  • Pulmonary Function Studies
  • Psychological evaluation
  • Bone Density Scan
  • Abdominal Ultrasound
  • Echocardiogram
  • Cardiac Catheterization
  • Blood work
  • Urinaly sis

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 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 cannot 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 to 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.
  • 2. 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.
  • 3. 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 Tamil Nadu.

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 stem 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 immunosuppressive 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 recognizes 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 immunosuppressant 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 monitored 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 immunosuppressant 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.