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FAQ's

FAQS’ FOR PEDIATRIC 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 mal development 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 paediatric heart-lung transplantation.

Who is a candidate for paediatric 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 stem 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 anaesthetic 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 paediatric 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, bronchoscopy is performed 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.