What to Expect at Your First Fontan Management Clinic Appointment
At Cincinnati Children’s, we manage care for children, teens and adults with a Fontan circulation. Our program traditionally serves adults, but we’re caring for a growing number of children and teens.
Benefits of Getting Care at a Children’s Hospital
As an adult, you may feel apprehensive about receiving care at a pediatric hospital. That’s understandable. Our Fontan Management team is trained in internal medicine and specifically in the care of children and adults with congenital heart disease (CHD).
Adult cardiology programs specialize in treating common heart diseases that develop in adulthood, like atherosclerotic coronary artery disease. At Cincinnati Children’s, we specialize in congenital heart diseases and adult congenital heart diseases (ACHD), which are structural heart abnormalities present at birth.
ACHD is less commonly treated in adult settings. Adult cardiologists often have limited training in the specific issues related to CHD.
Our team provides comprehensive and collaborative care for your congenital heart condition. We partner with adult cardiology programs regionally and often co-manage congenital heart care with colleagues at adult hospitals. We always consider the best setting for each aspect of your care.
Your Experience at Cincinnati Children’s
At our Fontan Management Program, we go to great lengths to make all patients feel comfortable, whatever their age. We also ensure that parents and other family members get the information they need and understand your care plan.
We address any questions you have about receiving care within a primarily pediatric health system.
Learn what to expect before, during and after your first appointment with us.
Making an Appointment with the Fontan Management Program
We want it to be easy for you to get care from our program. You can contact us directly to schedule an appointment, or your doctor can send us a referral.
The Fontan Management Clinic is located at Cincinnati Children’s Burnet Campus. We also coordinate and manage care, including testing, for patients at other locations.
Once we receive your appointment request, our nurse coordinator will reach out to you to get more details. This includes basic information about your medical history, including your diagnosis, current concerns and past treatments.
We will work with you to obtain other information (like operative notes or imaging studies) from the hospitals where you received care. Our doctors will review your medical records to decide if our program is the best fit for you. If so, we’ll schedule an appointment along with any needed testing. Our team may also connect you to other specialists and care services you may need.
If our Fontan Management team determines it’s best for you to see another type of doctor, we’ll talk with you about our recommendation and the reasons for it. For example, we might refer you to an adult cardiologist or an electrophysiology doctor.
Preparing for Your Visit
You can expect your appointment to be scheduled within one to five days after our initial contact with you.
- Test results. We may ask you to provide results from previous medical tests such as echocardiograms, catheterizations, exercise tests or cardiac MRIs. Your nurse coordinator will help you arrange for test results to be sent to us. Your care team will review this information before your visit.
- Out-of-town patients. If you live far away, we can schedule all your testing and appointments over several consecutive days. A social worker can provide support for lodging, a gas card or transportation. This may also be supported by insurance.
On the Day of Your Visit
Be sure to plan ahead.
- Allow two hours or more for your first appointment.
- Plan to arrive at the hospital 25 minutes early. This allows 10 minutes to park and walk to your appointment location and 15 minutes to get checked in. You will be asked to fill out a few short forms in person before your appointment.
- Bring necessary items. These can vary for appointments but typically include:
- Current medications (including dosage and instructions)
- Insurance cards
- Medical records
- Test results
- Any completed paperwork
- A copy of your advance directives or healthcare proxy if you have one
- Review our visitor’s policy, which can change based on illnesses circulating in our community. Please review the latest visiting guidelines before your appointment.
- Those scheduled for cardiopulmonary exercise testing (CPET) should wear comfortable clothes and athletic shoes appropriate for exercising on a cycle or treadmill. If you’re going to have an MRI, don’t wear any jewelry or metal.
Labs, MRIs and Other Tests
We will let you know if specific tests or labs are required at your first appointment, and we will tell you how to prepare.
We usually ask our patients to complete MRIs about a week before the Fontan Management Clinic appointment. This gives us time to review the results so that we can discuss them with you.
If You Are Running Late
If you are running late on the day of your appointment, please let us know. Call us at 513-803-2243.
During Your Appointment
While every patient is different, the general purpose of your first appointment will be to:
- Review your medical history
- Discuss any recent symptoms
- Conduct a physical exam
- Review test results
- Understand your priorities
- Answer any questions you may have
- Identify next steps and develop a plan for your future care
Adults with congenital heart disease often have complex backgrounds with multiple past procedures. We use your first visit to review your records carefully and work with you to understand your background.
Providers You May See
You will meet a variety of specialists on your first visit. They may include:
- Fontan management attending physician
- ACHD doctor
- Clinic nurse or medical assistant
- Fontan management program nurse or nurse practitioner
- Senior adult congenital heart disease fellow, rotating pediatric or adult cardiology fellow
- Pharmacist
- Clinical research coordinator
- Other Fontan-related specialists, such as a dietitian, exercise physiologist or genetic counselor
- Specialty doctors related to other areas of concern, such as gastroenterology, hepatology or pulmonology
Research Opportunities
Your care team may tell you about research opportunities during your visit.
At Cincinnati Children’s, we believe research is key to our mission to provide the best possible care for our patients today and into the future.
It is, of course, your choice to participate in a research project. Your decision makes no impact on how we approach your care.
Before You Leave
We will carefully review the next steps with you and work with you to schedule follow-up visits, including treatment, testing, imaging or any other appointments you need.
- After-visit summary. You’ll receive an after-visit summary that includes a description of your visit, current medications and instructions for follow-up.
- Follow-up care. We personalize your ongoing care plans just for you. We will discuss these plans with you before you leave. They may include:
- Cardiac catheterization
- Cardiac rehabilitation
- Medications
- Monitoring your health
- Surgery
- Emergency and inpatient care. When you are living with ACHD, it’s important to know when to seek emergency care. We’ll review with you what to do in case of an emergency. It may be best for you to visit our Cincinnati Children’s Emergency Department instead of an adult emergency department. We also provide inpatient care for our adult patients through UC Health and collaborate closely with adult providers throughout all health systems in Cincinnati.
- Questions. Please let us know if you have any questions or concerns. It’s our goal to answer all your questions before you leave your appointment.
After Your Visit to the Fontan Management Clinic
You may receive additional treatment recommendations from us after your first visit for reasons such as the following:
- Depending on your condition, we may present your case to our multidisciplinary team of specialists during our weekly ACHD conference. This provides an opportunity for many experts to discuss the best treatment options for you.
- You have surgery or a procedure scheduled in the future.
- You have future testing scheduled, and your plan of care may depend on those test results.
Care Coordination with Referring Doctors
It’s important for your other doctors to understand the care you’re receiving at the Fontan Management Clinic.
We will provide your referring physician with a copy of your after-visit summary. We can also share information with any other doctors you see who want to receive these updates.
Special Considerations
We understand that living with a Fontan circulation can be overwhelming at times for patients and their families. We provide services to help:
- Child life specialists are available to support patients and families of all ages if needed. Part of their role is to help lower stress and increase positive coping.
- Heart and Mind Wellbeing Center provides support for you and your family. Patients with heart disease may experience mental health challenges such as anxiety, depression and post-traumatic stress. We work closely with psychologists and others who provide helpful resources if you need them. We can also refer you to a primary care provider if needed.
- Contact us if you have a family member who would benefit from being seen at the Fontan Management Clinic but is hesitant to come. We’ll put you in touch with the right person.
