What to Expect at Your First Appointment at the Lung Transplant Program
Breathing. It’s an essential bodily function most of us take for granted. When we are stressed, we take a deep breath. When we are excited, we breathe faster. When sleeping, we breathe slower and shallower. Most of us aren’t aware of our own breathing.
As a parent of a child with lung disease, breathing becomes your whole focus. You sit with your child as they struggle to take a breath, try to be strong for them, and tell them everything will be okay. When you bring your child to the Cincinnati Children’s Lung Transplant Program, you take the first step to making that promise come true.
Our goal is for your child to breathe easier after their lung transplant. They deserve the chance to be as normal of a kid as possible. After a successful transplant, they can return to many normal things in life, including school, friends, family and activities.
Your child may be considered for a lung transplant when other medical and/or surgical therapies don’t improve their lung disease or condition to allow for them to participate in normal activities. Our team understands how difficult this decision is for your family. We’re here to provide you with details about the transplant process and to help guide you through the options and describe risks.
You will meet many specialists during the evaluation process. Each person on our team serves a specific role in a transplant—from financial specialists and social workers to physical and respiratory therapists and pediatric psychologists. Every person is dedicated to ensuring you and your child have the support you need every step of the way.
Making an Appointment at the Lung Transplant Program
You, or your referring physician, can schedule an evaluation by contacting our office.
For international patients, please fill out and send this online form. A staff member will contact you within 48 hours.
Before your Evaluation Visit
If you ask for an evaluation without a physician referral, our office will send a checklist of medical information we need, to your child’s physician, pulmonologist, cardiologist, or critical care physician. Once we have these details, our core team of care providers will review it to determine if your child could benefit from an evaluation.
If so, the office will arrange a conference call with your family to discuss the evaluation and transplant process and to answer any questions you may have. Approval for the transplant evaluation from your child’s health insurance provider before your evaluation visit is also needed. Our transplant nurse coordinator then will contact you to schedule a date for the evaluation. If your child is ultimately chosen to be listed for transplant, approval for listing for a transplant will be required from your children’s health insurance provider.
On the Day of Your Evaluation Visit to the Lung Transplant Program
Please let us know if you or your child have any concerns or special needs that will make your visit more comfortable.
Arriving at Your Evaluation Appointment
The Lung Transplant Program is located at Cincinnati Children’s Burnet Campus. We recommend arriving at least 30 minutes before your scheduled appointment to find parking, walking to the clinic, and registering for your visit.
At Your Evaluation Appointment
The evaluation process usually takes four days and, in most cases, your child won’t need to be admitted to the hospital. During the evaluation, you’ll have the chance to get to know our team members, and we’ll get to know your family. In addition, the team will discuss what you can expect from each care provider during the evaluation process. We also will make sure your whole family understands your child’s illness, along with the risks, benefits, and outcomes of lung transplants. We’ll also explain the process for lung transplant evaluation and listing.
Your child may undergo these tests during the evaluation:
- Abdominal ultrasound to assess health of other organs
- Blood work to assess immunity and a variety of other tests
- Bone density study to assess bone health
- Cardiac catheterization to assess health of the heart
- Chest CT scan to assess the extent of lung disease
- Chest X-ray to assess the extent of lung disease
- Physical therapy evaluation to assess strength and frailty
- Metabolic study to assess nutritional needs
On the last day of the evaluation, you will meet with the transplant pulmonologist and transplant coordinator to review all available test and exam results. You’ll also discuss if the team feels your child is ready to be considered for transplant and how urgent the transplant may be.
After Acceptance to the Lung Transplant Program
If the team recommends a transplant, your child will be placed on the national wait list as soon as possible. There are four steps to this process:
- Approval by the Cincinnati Children’s medical review board
- Approval by the Ohio Solid Organ Transplantation Consortium (OSOTC)
- Additional financial approval from your child’s insurance company
- Relocation to the Cincinnati area if you live more than 4-5 hours from our main campus
The transplant team will then send your information to the United Network of Organ Sharing (UNOS). Your transplant coordinator will let you know when this process is complete and answer any questions you may have.
Relocation
While your child is on the transplant list, it’s important to be able to travel to Cincinnati Children’s within about 4-5 hours when a potential donor becomes available. If that means you need to relocate, our team can help you make those arrangements.
Appointments While Waiting for a Lung Transplant
While your child is on the transplant list, they’ll be seen in the Lung Transplant Clinic routinely, most likely every few months. These appointments can last up to three hours. You are welcome to bring books, snacks, and quiet activities from home to keep your child comfortable. These visits are necessary to assess your child’s medical condition. Please bring a list of all medicines your child is taking and any other records you have to every appointment, including vaccinations The care team will monitor any medical changes your child may be experiencing. In addition to regular lab tests and blood work, we’ll also show you how to monitor your child’s vital signs at home.
Donor Lung Allocation
The lung transplant team considers many factors when placing patients on the transplant list. These factors include age, the severity of disease, lab tests, the need for mechanical ventilation and more. As the donor allocation system in the United States transitions to a continuous distribution system though UNOS, the team at Cincinnati Children’s will follow all regulatory guidelines to optimize your child’s chance of undergoing a lung transplant.
Communication While Waiting for a Lung Transplant
The transplant team must be able to contact you at all times while your child is on the transplant wait list. Please keep your phone numbers up to date with the team. This includes work, home, and cell phone numbers, as well as numbers for neighbors and family members. You should carry the transplant center’s numbers with you so you can call us at any time.
What to Do While Waiting for a Lung Transplant
As you wait, the transplant team will develop a care plan that best meets your child’s health needs. Your responsibility is to ensure you follow your child’s plan. The plan includes instructions for medicines, vaccinations, diet, physical therapy/exercise, and clinic visits.
Vaccinations: Please check with your care team before your child receives any vaccines. Your child shouldn’t receive live vaccines while on the transplant wait list or after the transplant.
Examples of live vaccines are:
- Varicella (chickenpox)
- Flu mist
- MMR (measles/mumps/rubella)
- MMRV (measles/mumps/rubella/varicella)
- Oral polio
- Rotavirus
- Certain travel vaccines
Your care team will give you a complete list of approved vaccines and a timeline for when your child will need them. All transplant patients should receive their first COVID vaccination series and 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.
Physical Activity: Physical exercise is a critical component of your child’s pre-and post-transplant care. It is essential for your child to follow the exercise plan developed by their physical therapist and exercise physiologist. Your child will have regularly scheduled physical therapy (PT) or pulmonary rehabilitation appointments and be given homework by the therapists to do between visits.
Nutrition: Good nutrition will help your child’s body deal with the transplant and recover more quickly. During the pre-transplant evaluation, a dietitian will monitor your child’s growth and overall nutritional health. They might ask you to write down what your child eats over several days. For example, your child may need more calories, vitamins, or minerals to help them grow, or they may need tube feedings. The dietitian can help you develop and follow a nutritional care plan for your child.
Lung Function: the lung transplant pulmonologist and respiratory therapist will closely monitor your child’s lung function before and after the transplant. Your child will receive a home spirometer, that measures lung function, to take home with them after the transplant.
The Cost of a Lung Transplant
You will incur medical expenses at all phases of the transplant process. These costs will vary depending on your child’s diagnosis, their need for hospitalization, and the length of time your child is on the transplant list.
Our financial specialist will work with your family and your insurance providers. The social worker on our team can provide details about fundraising and other national, regional, and local resources to help with costs.
During a Lung Transplant
When the team identifies a potential donor, a transplant coordinator will call you, and you’ll need to come to the hospital right away. Your child will be admitted to the hospital upon arrival and taken to surgery at the scheduled time.
There is typically two surgeons involved in your child’s transplant. The surgery typically takes between six and eight hours. During the surgery, you’ll receive regular updates from the operating room nurses and transplant physicians.
Hospital Stay After a Lung Transplant
When the transplant is complete, the surgical team will take your child to the Cardiac Intensive Care Unit (CICU) nearby, where you can visit with them. Most patients begin to wake up within the first few hours after surgery. At first, your child will have a breathing tube. Once awake and breathing on their own, the breathing tube is removed. This typically occurs within the first 48 hours.
Your child will have some discomfort after the transplant surgery. We have pain specialists who will keep your child as comfortable as possible. Each patient recovers from surgery at a different pace. It’s normal for your child to have some days that are better than others during recovery.
The lung transplant team will see your child every day and will discuss with you any changes in your child’s condition. They also will answer any questions you may have. Once your child is stable, they will move from the CICU to the cardiothoracic step-down unit.
After a Lung Transplant
The average length of stay in the hospital is unpredictable, with younger children often requiring longer hospital stays after a lung transplant. Beyond age, several factors may affect your child’s length of stay such as underlying diagnosis and how sick they were before the transplant.
You and your child must remain close to the hospital for two to three months after the transplant. Your child will be seen one to two times a week in the transplant clinic, and receive outpatient PT and occupational therapy (OT) twice a week. We’ll perform regular blood work, and then at some point, pulmonary function testing will be started if your child is old enough to perform them. Your care team will watch closely for complications like rejection, infection, and bleeding, and work proactively to treat any of these issues or other potential complications.
We will also educate you on what symptoms of these complications you should look for and how to check things like blood pressure on an ongoing basis.
It is essential to understand all of your child’s prescribed medications. Getting kids to take their medications can be challenging at times. You’ll need to set firm limits when giving medication. Your child must take their medicines as prescribed, on time, every day. The transplant pharmacist will provide you with comprehensive medication education throughout all phases of your child’s transplant care in addition to developing a Medication Action Plan.
The goal is for your child to return to their regular routine, including school, as soon as possible. Your child will return to Cincinnati Children’s every three to six months for follow-up. We will closely monitor for subtle changes in your child’s medical condition. Your transplant team will work with your child’s pediatrician and referring physician to ensure the best possible outcome.
The Lung Transplant Program can provide other resources for you and your family, including details about online support groups, ways to get financial help, and local and national organ transplant websites.
