Lung Transplant

Frequently Asked Questions

In the first sessions you have with the lung transplant team, you will discuss the latest national and international survival data, as well as the success rates at Cincinnati Children’s. Survival rates are highly dependent on your child’s state of health and the underlying disease causing their lungs to fail.

Generally, hospitals across the country have continued to see improved survival rates over the past several years.

Your child will need to undergo a thorough evaluation to find out whether he or she is a candidate for a lung transplant. The evaluation at Cincinnati Children’s will take place over four days and will include getting to know you and your child, discussing your child’s underlying lung disease and the details of their illness, and learning about lung transplants and any associated risks, benefits and outcomes of the surgery. Your child will also undergo test work during their evaluation, including blood work, pulmonary function testing, a chest X-ray and CT scan, as well as a physical therapy evaluation, abdominal ultrasound and bone density study.

On the last day of your evaluation, you will meet with the transplant provider and the Transplant Coordinator to review any available test results and to discuss if the team feels your child is ready to be considered for transplant.

Some common conditions that may require a lung transplant are:

1. Cystic fibrosis (CF)

2. Chronic lung diseases where other treatments no longer work

3. Interstitial lung disease

4. Pulmonic vascular congenital heart diseases

5. Bronchopulmonary dysplasia or chronic lung disease (CLD)

6. Pulmonary hypertension (PH)

7. Heart disease or heart defects affecting the lungs

8. Pulmonary fibrosis

9. Alpha-1 antitrypsin deficiency (ATT Deficiency)

10. Surfactant protein deficiency

11. Bronchiolitis obliterans

You, or your referring physician, are able to schedule an evaluation by contacting our Lung Transplant office at 513-803-7009.

If this is a self-referral, our office has a checklist of medical information we will need to send to your child’s referring physician or primary pulmonologist. Once we have this information back, our core team of providers, surgeons and nurses will review the case to determine if your child is an appropriate patient to bring in for an evaluation. If so, we will set up a conference call with your family to discuss the process, evaluation and to answer any questions you may have. Our transplant nurse coordinator will then contact you to schedule a date for the evaluation.

Single-lung transplant: A patient receives one lung during the transplant.

Double-lung transplant: A patient receives two lungs during the transplant.

Heart-lung transplant: A patient with severe heart disease and lung disease receives a heart and lung(s) from a single donor.

Living donor lobar lung transplant: A patient receives a segment, or lobe, of a healthy adult’s lung.

Donor lungs are located through the United Network for Organ Sharing (UNOS) and will come from a compatible, deceased organ donor.

There is no way of predicting how long the wait may be. It could take anywhere from a few days or months to more than two years and is dependent on your child’s age and how many lungs are available at the time.

For patients over the age of 12, the United Network for Organ Sharing (UNOS) has an algorithm for coming up with a lung allocation score (LAS), taking into account how urgently a child will need a transplant and the severity of his or her condition. The system determines the order of everyone awaiting a lung transplant by their lung allocation score, blood type and the geographic distance between the candidates and the hospital where the donor is located.

Patients under the age of 12 are on another list and are ordered based on the amount of time they’ve spent on the waiting list and their medical condition.

As the parent, you are the most important member of the transplant team once your child is on the waiting list. The transplant team depends on the family to help provide the best healthcare possible. If there are ever any changes to your child’s medical condition, please contact your transplant team immediately. Parents are also responsible for:

Transportation: You may receive a call for transplant at any time — night or day! You must be able to reach the hospital within 4 hours.

Pager: The transplant team will issue you a pager to so they can contact you when an organ offer has been made for your child. You must carry the pager at all times. The pager should be checked daily and should only be utilized for the team to contact you.

Adherence: The transplant team will discuss the plan that will best meet your child's health needs. It is your responsibility to make certain you are following your child's health care plan. The plan includes instructions for medicines, diet, physical therapy/exercise, immunizations and clinic visits.

Communication: It is very important that the transplant team be able to contact you at all times. Please keep phone numbers up to date. This includes work numbers, home numbers, cell phone numbers, neighbors, family members and other contact numbers. You must be able to call us at any time and should carry the transplant center's numbers with you.

Vaccinations: Please check with your doctor or nurse before your child gets any vaccines. Your child should not receive live vaccines while they are on the transplant waiting list or after transplant. We can give you a full list of approved vaccines and a timeline for when your child will need them. All transplant patients are expected to receive their yearly flu shots. Flu shots are strongly encouraged for all family members as well. Others living in the home, including siblings, can receive the MMR, the MMRV and the Varivax vaccines, but should avoid the flu mist vaccine.

Examples of live vaccines are:

• MMR (Measles/Mumps/Rubella)
• Chickenpox (Varicella/Chickenpox)
• MMRV (Measles/Mumps/Rubella/Varicella)
• Flu mist
• Oral polio
• Rotavirus

Physical Therapy: Physical exercise is a critical component pre- and post-transplant. It is essential for your child to continue with the exercise plan developed by your physical therapist and exercise physiologist. Your child will have regularly scheduled PT appointments and will be given homework by the physical therapists to do between visits.

Labs: We want to monitor any medical changes your child may be experiencing. In addition to regular lab tests and blood work, we will also show you how to monitor your child’s vital signs at home.

Nutrition: Good nutrition is important for growing and staying healthy. It is also important to help your child’s body deal with the transplant and recover more quickly. It is important that you understand and help your child with their nutritional goals. During the pre-transplant evaluation, a dietitian will monitor growth and overall nutritional health. He or she might ask you to write down what your child eats over several days. The dietitian will be able to help guide you and the team in making a nutritional care plan for your child. Some children with lung disease:

• Need more vitamins and minerals
• Require more calories than usual to help them grow
• Need tube feedings to help them gain weight and grow

All patients listed for lung transplant at Cincinnati Children’s must live within a 4 hour drive of the hospital until the time of transplant. Speak with your team about requirements for relocation.

There are many housing options in Ohio, Indiana and Kentucky that meet the criteria and we will work with you to help find a place that is suitable for you and your family.

Cincinnati’s Ronald McDonald house provides a “home away from home” for critically ill children and families seeking medical care at Cincinnati Children’s. To learn more about Cincinnati’s Ronald McDonald house and to book a room, visit their website or call 513-636-7642.

The guest services team at Cincinnati Children’s is also available to help you and your family find accommodations in the area. They can be reached Monday through Friday from 6 am to 9 pm by at 513-803-7009 or guestservices@cchmc.org.

Rejection is a normal reaction when your child receives a new organ. Your child may experience rejection if their body does not want to accept the new organ. In this case, your child’s immune system will recognize the transplanted lung as a foreign object. Your child will be taking medication to try to avoid rejection, but it is still possible. Fortunately, rejection can be treated if the signs of rejection are recognized early on. In rare cases when the rejection is not controlled, your child may need to be re-transplanted.

It is important for you and your family to be aware of the signs of rejection, ensure that your child is taking their prescribed medications, and follow up with scheduled appointments and ongoing monitoring.

Here are the common signs of rejection in children:

• Flu-like symptoms: chills, aches, headache, dizziness, nausea and/or vomiting

• Fever

• Chest congestion

• Cough

• Shortness of breath

• Fatigue

• Decreased urine output or fewer wet diapers than usual

• Pain over the transplanted lung